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Posted By : Plucky - 9/26/2017 8:22 PM
Hey all (especially UBT, CLO, TAM and NCOT)
I've had a thread on the UC board chronicalling the wicked flare (complete with perianal fistula) that I have been in since Jan. '17 (which changed my dx from UC to Crohn's Colitis).
I'm steroid-dependent (currently stuck at 20mg and things are getting worse again) and resistant to biologics (failed Remicade, Humira, and now Stelara) as apparently my body metabolizes them quickly and they cannot build up/stay at theraputic levels (no antibodies, just special).
I was better but currently 7+ bloody BM's per day, explosive D, very little formed, straining--I can feel my fistula broke open after it had healed--cramping, fatigued, in pain and not able to live the life I want. Icm athletic and I want to have another baby soon because I'm nearly 38yo.

So I've decided to abandon drug therapy and get the ileostomy. It was a bitter pill to swallow, having had relatively "quiet" UC for 13 years and always banking on the j-pouch being my "get out of jail free" card if worse came to worse... I didn't actually know how bad it could get until this flare brought me to my knees.

So I'm asking for any suggestions about pre/post surgery (I mean ANY suggestions about things that made you more comfortable/worked well for you). I will be traveling 2hrs to the hospital and my intention is for my husband and our toddler to stay nearby until I'm released--maybe a week? I'm a stay at home mom of a toddler and I don't have any family nearby or people I'm truly comfortable asking for help. I do a lot of driving because we live 30-40min from most stores and activities. My husband has a demanding job but will take off as I need him to--I was thinking he might need to take off 2 weeks? What supplies do you like best (I am sensitive to adhesives)? For working out? Anyone been pregnant with an ostomy? TIA
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Post Edited (Plucky) : 9/26/2017 8:25:03 PM (GMT-6)


Posted By : NiceCupOfTea - 9/27/2017 8:10 AM
Hi Plucky. I have a feeling your headline will be my one in 1-2 years' time :-/

Is there a stoma nurse at your hospital? I hope so, 'cos mine (there were two of them) were very helpful. One of them measured me up for a stoma a few days before the operation and drew a large black circle where the stoma would go. This step is really important, particularly for a stoma that's going to be permanent: you want the stoma to fit in as much as possible with your clothing and your body shape (it shouldn't be on or next to any creases). I also got to speak to a woman who had a stoma and ask her questions.

You probably will be in hospital for about a week - 4-5 days minimum, but probably more like a week. I had no complications and I was still in for a week. You won't be able to drive for 4 weeks afterwards (I was super paranoid about a hernia and gave it 8 weeks, but in retrospect I don't think that was necessary). I stocked up on food beforehand and froze enough meals to last for 2 weeks. You can also get online groceries delivered. Buying stuff shouldn't be a problem, it's going to places that's difficult without a car. What about taxis or buses?

For supplies, my stoma nurse gave me some decent advice. She said in the beginning just stick with the first thing that works. There's enough of a learning curve with having a stoma and emptying/changing the bag, without trying to learn about all the different brands and accessories. Plus on top of that the stoma will change its shape/size over the next few months (it usually shrinks). For me I was getting stressed out with all the choices on offer and that was good advice. The only accessory I found essential were seals - rubber rings which sit around the stoma (Eakins is a popular brand of seal). Had to use those, otherwise the skin around my stoma would quickly become a macerated mess. At around the 6-month mark I wanted to try experimenting with different bags again, and it was definitely much easier by that point.

For the surgery itself, make sure your surgeon is aware of the importance of creating a decent spout - the ileostomy should stick out by an inch to an inch and a half. 'Flush' (i.e. level with the skin) stomas are a nightmare to deal with; they are far more likely to leak and it's far harder to stop them from leaking.

I think that's about everything. I'm sure other people will have more to offer, but I personally can't think of anything else right now. Have you booked a date for surgery yet? I will be wishing you the best of luck. For me an ileostomy was the closest thing to being free of Crohn's I've ever had with this disease.

Just thought of one more thing. Are you gonna have a total proctocolectomy? That is, colon and rectum removed? I strongly advise it, as just leaving a diseased rectum sitting there isn't a great idea really. In the long term it's a cancer risk. And in the short term you'll likely still be passing mucus and blood and suffering from tenesmus.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Posted By : Plucky - 9/27/2017 2:08 PM
NiceCupOfTea said...
Hi Plucky. I have a feeling your headline will be my one in 1-2 years' time :-/

Is there a stoma nurse at your hospital? I hope so, 'cos mine (there were two of them) were very helpful. One of them measured me up for a stoma a few days before the operation and drew a large black circle where the stoma would go. This step is really important, particularly for a stoma that's going to be permanent: you want the stoma to fit in as much as possible with your clothing and your body shape (it shouldn't be on or next to any creases). I also got to speak to a woman who had a stoma and ask her questions.

You probably will be in hospital for about a week - 4-5 days minimum, but probably more like a week. I had no complications and I was still in for a week. You won't be able to drive for 4 weeks afterwards (I was super paranoid about a hernia and gave it 8 weeks, but in retrospect I don't think that was necessary). I stocked up on food beforehand and froze enough meals to last for 2 weeks. You can also get online groceries delivered. Buying stuff shouldn't be a problem, it's going to places that's difficult without a car. What about taxis or buses?

For supplies, my stoma nurse gave me some decent advice. She said in the beginning just stick with the first thing that works. There's enough of a learning curve with having a stoma and emptying/changing the bag, without trying to learn about all the different brands and accessories. Plus on top of that the stoma will change its shape/size over the next few months (it usually shrinks). For me I was getting stressed out with all the choices on offer and that was good advice. The only accessory I found essential were seals - rubber rings which sit around the stoma (Eakins is a popular brand of seal). Had to use those, otherwise the skin around my stoma would quickly become a macerated mess. At around the 6-month mark I wanted to try experimenting with different bags again, and it was definitely much easier by that point.

For the surgery itself, make sure your surgeon is aware of the importance of creating a decent spout - the ileostomy should stick out by an inch to an inch and a half. 'Flush' (i.e. level with the skin) stomas are a nightmare to deal with; they are far more likely to leak and it's far harder to stop them from leaking.

I think that's about everything. I'm sure other people will have more to offer, but I personally can't think of anything else right now. Have you booked a date for surgery yet? I will be wishing you the best of luck. For me an ileostomy was the closest thing to being free of Crohn's I've ever had with this disease.

Just thought of one more thing. Are you gonna have a total proctocolectomy? That is, colon and rectum removed? I strongly advise it, as just leaving a diseased rectum sitting there isn't a great idea really. In the long term it's a cancer risk. And in the short term you'll likely still be passing mucus and blood and suffering from tenesmus.


NCOT,
So good to hear from you! How are you doing? I haven't been on the boards much lately as I have been so busy getting ready to move--the stress of which has worsened my flare and now as of today I have the flu--just shoot me and put me out of my misery! Thats a joke but on a serious note, I wish I could just take some strong pain meds and sleep all day--impossible with a toddler.

The surgeon won't do the protocolectomy with the first surgery, it must be a 2nd surgery and I need to wean from the prednisone and stelara first. There is a teeny tiny chance that they will offer me a j-pouch, but I don't intend to consider it unless I have issues with the ileostomy.

Thank you for all your helpful suggestions! I'll be writing these down to discuss at my appointments next Monday.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : U B Tough - 9/27/2017 2:27 PM
Dear Plucky,

You brave woman. I admire you. I just can't get there.....yet even though I'm still abscessing blah, blah blah.

Stelara is really helping me. Not perfect but my bm's are formed...1-4 day. Still urgency. My GI wants me to be on it for at least 6 months to see if it will heal the fistulas. I just had my 3rd dose 10 days ago. And I came down with a virus immediately following. I'm trying to have some sort of life and am doing well at that. Yesterday I took a ferry to an island and spent the day at the beach!! Even public transit home. I did take an immodium because of the urgency and not have near by access to a clean bathroom but I'm fine with that. Today I'm so run down and in tears. I knew that would happen. Plus the butt pressure pain is building again.....I'm fearful of my next abscess/surgery and pain.

Would you consider a diversion?

I have 2 upcoming CRS appointments in October with 2 different CRS from the one I've seen over the last year. I'm hoping they'll do a LIFT to fix the fistulas and then maybe, just maybe I'll have some respite. My GI has also made a referral to the Mayo but thats a long shot from a financial perspective. Failing that my GI will try me on MAP drugs.....then if I can get psychologically strong enough maybe a diversion. My tiny support system is burnt out and I really don't think I could handle it. Perhaps you'll provide me with the example I need. My 81 year old mom has one and it's frankly heartbreaking...she's struggling so much that I think it's very hard for her to say I should follow suit and do it.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

Posted By : Plucky - 9/27/2017 6:37 PM
U B Tough said...
Dear Plucky,

You brave woman. I admire you. I just can't get there.....yet even though I'm still abscessing blah, blah blah.

Stelara is really helping me. Not perfect but my bm's are formed...1-4 day. Still urgency. My GI wants me to be on it for at least 6 months to see if it will heal the fistulas. I just had my 3rd dose 10 days ago. And I came down with a virus immediately following. I'm trying to have some sort of life and am doing well at that. Yesterday I took a ferry to an island and spent the day at the beach!! Even public transit home. I did take an immodium because of the urgency and not have near by access to a clean bathroom but I'm fine with that. Today I'm so run down and in tears. I knew that would happen. Plus the butt pressure pain is building again.....I'm fearful of my next abscess/surgery and pain.

Would you consider a diversion?

I have 2 upcoming CRS appointments in October with 2 different CRS from the one I've seen over the last year. I'm hoping they'll do a LIFT to fix the fistulas and then maybe, just maybe I'll have some respite. My GI has also made a referral to the Mayo but thats a long shot from a financial perspective. Failing that my GI will try me on MAP drugs.....then if I can get psychologically strong enough maybe a diversion. My tiny support system is burnt out and I really don't think I could handle it. Perhaps you'll provide me with the example I need. My 81 year old mom has one and it's frankly heartbreaking...she's struggling so much that I think it's very hard for her to say I should follow suit and do it.


UBT,
Brave yes, but no braver than you or any of our other cohorts--I get why you're looking for options because surgery is a mixed bag and there's no guarantee it will heal your fistulas, which are your biggest issue. I'm so glad Stelara is working for you! I'm so glad you are getting out more and enjoying some freedom.

I'm just ready for the next chapter and I feel like it's my fate to have an ostomy--so be it--I want to embrace a new way of life rather than be stuck in this flare any longer. Plus I have responded *instantly* to every biologic, but they wear off because I metabolize them too quickly so it seems pretty pointless to prolong the inevitable by toying with other drugs.

I'm in bad shape right now due to having the flu so I called IBD Specialist and she said "Go to the ER" but I feel the same way you do--only if I have LOTS of time to waste and desperately need fluids and pain meds. I'm not quite there yet, but I'm getting close. My Stelara isn't due for another month (they cant/wont do it sooner than 8 weeks) and the only other thing they could do to stabilize me is up my prednisone dose, which they won't, because they want me on the lowest dose possible prior to surgery. So what I anticipate on Monday is that IBD Specialist and the CRS will want me to have surgery asap. I had intended to push it out to the beginning of November but I can't go on like this. Scared I will abscess again as my fistula has broken open from all the straining these past few days, and my thrombosed hemorrhoids are resurrecting themselves. Oh h-e-l-l no! I want none of that. Good riddance to all of it.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : NiceCupOfTea - 9/27/2017 8:01 PM
Plucky - I'm really sorry. I wrote a long reply, only to have HW log me out halfway through and I lost the whole post. (Absolutely maddening.) It was right before bedtime as well.

I'm sorry about the flu. That's miserable.

I also said my surgeon was the same about a proctocolectomy. Forgotten that, but she refused to do a proctocolectomy as well, on the grounds I was really ill with Crohn's and on steroids. Apparently rectum removal is a complicated and tricky business compared to a colectomy. Where my surgeon differed from yours was reducing the dose of steroids before surgery. She told me not to worry about it, as I would be put on a high dose of steroids again during surgery anyway. I was on 40mg for a few weeks before surgery. No problems with surgery or healing afterwards, but getting off the final 10mg was a bit of a nightmare. Took the taper very, very slowly, but still had steroid withdrawal symptoms.

I hope you don't abscess again. I have a haemorrhoid. They are miserable, but not as bad as abscesses or fistulas.

That was almost everything I said <_<. Need to get to bed now, but wishing you the best of luck. Make sure to rest; even with a healthy person the flu is brutal.

Posted By : DCCrohns - 9/27/2017 8:29 PM
I had my ileo a little over a year ago, and I was in the hospital for four days. Sadly, my planned laparascopic surgery was converted to open, so i ended up with more inches of incision than otherwise. I was fortunate to have family on hand to help for a few weeks but I found the general recovery not too be too horrible (or maybe it's like childbirth and your forget somewhat), but I did struggle with having a fairly flat/flush stoma.

I agree that a solid ostomy nurse is key, and I had a home healthcare option, as well as ability to go visit nurses at the hospital I had my surgery at. It took lots of trial and error with appliances but we ultimately found a system that worked for me and, over time, my stoma became more prominent (at least enough not to be an issue...although I still like the security of wearing a belt with mine).

I do recall not having much of an appetite, so I highly recommend the pre-mixed Muscle Milk shakes to ensure you are getting protein and vitamins (vanilla is pretty good). For a long time I was eating a pretty bland/white diet (white bread, pasta, cheese, yogurt, etc.), but you'll get more confident with food choices. I still have to be careful with most veggies and fruits, but I have gotten to where I can indulge on my favorite kale and wild rice salad (just have learned how my body processes it and to do so when I can keep a more active eye on things so I don't pancake or develop a leak).

And, if you haven't heard it already, the marshmallow trick is the best for changing your bag. I usually do first thing in am and have 4-6 marshmallows, wait 30ish minutes, shower and I'm in the clear for a mess-free change.

Too much to share...but best of luck to you! And feel free to ask away!
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, Humira
Current Meds: Stelara, Azathioprine (100mg/day)

Surgeries: Fistulotomies & Seton Placements/Adjustments (9/2011, 1/2013 & 8/2013); Advancement Flap (12/2013); Temporary Loop Ileostomy (7/2016); Fistula Repair with Gracilis Muscle (9/2016); Fistula Repair (12/2016)

Posted By : U B Tough - 9/28/2017 5:36 AM
What's the marshmallow trick?

Posted By : clo2014 - 9/28/2017 2:22 PM
Plucky,

So sorry you are going thru this. You have the right attitude. If you need to do this move forward with a positive attitude. It will make a huge difference. Part of that is knowing that this is what you need and just going for it. There aren't any guarantees but I think that many of the people who have ostomies report a higher quality of life.

My first question to my CRS would be-- Since my diagnosis was changed to Crohns should we be doing a resection, colostomy, or ileostomy? What is your reasoning? What studies should I look at? Then I would do some serious research. Think laparoscopic but plan for open.

Visit the ostomy nurse at the hospital, have her mark where it will be and try wearing bags/clothes with where she marked. We did this in hospital and it really helped. That quarter inch can make a tremendous difference in comfort and bag adherence. ( if it gets caught up in your clothes.)

I have an end colostomy. They left part of my sigmoid and rectum. Theoretically I can be hooked back up. We did the colostomy because (1) there was a stricture. (2) with a diagnosis of Crohns my CRS wanted to save as much as possible. If I had been diagnosed with UC we would have gone with an ileostomy....however if there is any doubt he goes with the colostomy. If I didn't have a huge RVF and issues with fistulizing we would have gone with a resection.

Now with a toddler and upcoming surgery....I wish you lived close by so I could come help....there are lots of things to prepare.

Fix foods that do not cause you issues and freeze in individual containers. Buy those weird foods that you can eat and crave while in a flare ( mine were Cheetos and Bridgeport beef jerky) and keep them just in case. Also purchase purple grape juice ( used to thin your output) and those other foods that currently cause you to have D and have them for when you come home. For thickening buy peanut butter, pretzels, marshmallows. Whenever you thin or thicken your output in the beginning use just a little and see what happens. I used grape juice...4 ounces...waited an hour did another 2 ounces and then some water. Do not chug a whole thing of grape juice!! It causes dark purple frequent output and then you are trying to get more liquids back in. Do not eat a bunch of marshmallows...do one or two and see how it goes. Absolutely stay away from gummie bears and pizza dough. These can all obstruct you. These are all personal observations that all scared 10 years off my life.

Buy at least 1 bed protector/mattress cover. Make sure to ask the hospital for those little protectors you lay on. You can also buy them at Wal-Mart...but my hospital gave me about 15. That way while you are getting used to your ostomy..if there is an accident it is easy to clean. And they work when you are sitting in a chair or a sofa. Also have a second set of sheets, blankets and comforter for your bed....just in case...and have it sitting in your closet or close at hand. (I only had to change everything once..those little hospital protectors saved me.)

Make an organized, designated area in the bathroom for your supplies. Make sure you have a full length mirror to look into to change your bag. If your vanity mirror is low enough and you are tall enough you won't need the full length mirror. ..just so you can clearly see where your stoma is... I have two cheap rubber backed rugs that I put down when Freddie gets a naked shower or for when I am changing him. My friend just lays down a couple of towels. I also have a cheap 3 drawer roll bin that I put my supplies in and a little plastic 3 or 4 drawer plastic organizer. Walmart...20. And 6. It fits in my bathroom closet when I want to hide it.

Part 2 will be posted later.

Clo

Posted By : notsosicklygirl - 9/28/2017 2:54 PM
clo2014 said...
Plucky,

My first question to my CRS would be-- Since my diagnosis was changed to Crohns should we be doing a resection, colostomy, or ileostomy? What is your reasoning? What studies should I look at? Then I would do some serious research.


I wonder about this too. Definitely question #1.

Have you had upper imaging? I was required to have an MRE prior to surgery. If there is something to be seen in the upper, clo is right, resection may be a better option.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Posted By : cupcakespinkgal - 9/28/2017 4:06 PM
Our stories sound similar. I was UC scheduled for jpouch surgery, surgery canceled and officially Crohns Colitis. My disease was always in the colon and rectum, only figured out Crohns because of pathology and developed and RV fistula.

If the diagnosis is Crohns Colitis and your disease always behaved like UC and remained in the colon I think you are on the right track with the ileostomy. I first had a resection with temporary ostomy. Wrong decision. And with Crohns Colitis I would not want a colostomy.

Your recovery will definitely be easier just doing the colectomy and not the proctocolectomy. My first surgery with resection and temp ostomy was a much better recovery. Hospital 4 days and could drive within a couple weeks. The rectum removal definitely extends recovery, and length before driving. I think most surgeons prefer doing it in 2 surgeries. Mine would not because of my 2 previous surgeries so close and my surgeon didn't want to have to operate a 4th time.

The tips to have prepared food ready is really helped me. I made a big batch of my favorite Mac n cheese and froze it in individual portions. Came in so handy! Especially once my husband went back to work and I was on my own for lunch.

The marshmallow or gelatins trick is good too. I still use it. Similar to DCcrohns I eat some jumbo puffs or drink gelatin, then hop in the shower and when I get out my stoma is quiet and very easy to change.

There is a blogger (2 actually) that were both pregnant with an ostomy. The Stolen Colon had a lot of good info for me especially about dressing. It helped me a lot to see someone of similar age wearing clothes and bathing suits with the ostomy.

It is a hard decision but sounds like you have a good plan.

Opting for an ileostomy was the best decision I ever made since becoming sick.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

Post Edited (cupcakespinkgal) : 9/28/2017 4:10:20 PM (GMT-6)


Posted By : DCCrohns - 9/28/2017 7:49 PM
U B Tough said...
What's the marshmallow trick?


For bag changes, eat 4-6 marshmallows about 30-45 minutes before you want to change your bag (I usually do in the morning). The marshmallows slow things down so you (usually) don't have to deal with active bowel movements while changing your bag...giving you ample time for a relaxing shower, etc.

It may not work as well for everyone, but it helps me out for sure!
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, Humira
Current Meds: Stelara, Azathioprine (100mg/day)

Surgeries: Fistulotomies & Seton Placements/Adjustments (9/2011, 1/2013 & 8/2013); Advancement Flap (12/2013); Temporary Loop Ileostomy (7/2016); Fistula Repair with Gracilis Muscle (9/2016); Fistula Repair (12/2016)

Posted By : Bmanningco - 9/28/2017 10:18 PM
I wish you good luck with the ileostomy. It will feel like a life-saver after the pain i'm sure you have been in daily. I had an emergency temporary (ha) ileostomy in November due to a fistula. It was a life-saver but it hasn't been fun. I am not responding to Remicade so my temporary ileostomy is not going to be reversed anytime soon.
They caution on lifting more than 10 lbs for 4 weeks after surgery. I didn't follow that advice as I too have a small child. My ileostomy is now slightly herniated. I recommend researching products for your ileostomy prior to your surgery. i wasn't able to do that and finding products that work for me has been a constant issue. My inflammation has continued and I now have another fistula so I'm not sure what the future brings to me, but, I wish you the best.

Posted By : clo2014 - 9/29/2017 4:19 AM
Plucky,

My doctor told me not to lift anything heavier than a half gallon of milk for 8 weeks. They placed a 6 inch stretchy belt with Velcro around my tummy and told me to wear it as much as possible....full time actually....until after he saw me at 2, 4, 6 and 8 weeks. Pain in the......but he didn't want a hernia. No driving for 6 weeks. Plan on hubby or friend going grocery shopping with you for the first 4-6 weeks.

The first two weeks were a little rough for me. I chose not to have home health come in to help me. I only took the pain meds at night and switched to Tylenol at 2 weeks. Changing my bag at home the first time took me about 30 minutes...I had to lay down in the middle of it. And I bought soft clothes in one size bigger to wear the first 8 weeks. I was so bloated....but after that I could wear my normal clothes.

The amazing part after surgery... You will have some pain....but I felt better. There was always this feeling of nausea 100% of the time before...now it is down to 50%. I can also eat almost anything in moderation.

For the smell of the output....M9. They make a product for your bag and a spray for the air. I tried everything else and this stuff works. For me it was worth it.

Try your samples. The different companies will send lots of them to you.....keep track of the ones that work for you. I had so many sent to me I didn't have to order for 4 months....(except the M9...no samples given)

And finally, I made a backpack of clothes and ostomy supplies to take with me and I ust put it in the trunk...

I wish you the best of luck in deciding what to do. If you have any questions please just let me know.

Clo

Posted By : NiceCupOfTea - 10/2/2017 1:41 PM
Spammer alert, mods.

Posted By : Plucky - 10/3/2017 4:34 PM
Update:

Guys! Thanks so much for your input & especially Clo for the TLC. I haven't been around because of having the flu and moving and having the toddler. And I saw the IBD Specialist and CRS yesterday.

I SCHEDULED MY SURGERY!

October 17th

I was marked & I'm wearing a Coloplast mio (maybe the sensura mio?) And it's great! I am actually excited to get on with it! Of course today I've been much better (only 3 toilet episodes in 12 hours) and that makes me pause and say "WTAF colon?" But I'm dismissing it. Too little, too late colon--you had your chance.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : cupcakespinkgal - 10/3/2017 7:00 PM
That's exciting, sounds like you are ready!

I wear the Coloplast Mio. It s by far my favorite of all the appliances I tried!

Good luck with surgery and recovery!
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

Posted By : clo2014 - 10/3/2017 9:21 PM
Plucky,

I am being nosey.......what did they decide? Is it an end with the possibility of being either temporary or permanent?

I am so glad that your nurse marked you and you are trying it with your clothes and seeing how everything works. My nurse initially started to put mine a little far over on my left side. We had to move it. I am a side sleeper and was afraid that I would not be able to just sleep on my back....and I was right. I still flip over to my left side but thankfully it is just high enough that I don't squish it!

I love coloplast. I use a two piece system. I still pancake so I do things they (coloplast) will tell you not to do. I keep a little bottle of water by the toilet and when I empty my bag I swish it out. Drove my coloplast advisor nuts but I just can not not swish. I don't fill the bag up with water I just swish the bottom part. And they make these little tape strips...the strips help.hold the edges down on your bag. Most people don't need them but I....well I am just tall enough that I am constantly rubbing the edges of my bag loose....or maybe it happens because of all that swishing. ...hmmmmmm....

I hope your Mom is coming to help you. Sorry...but being a Mom...I always think that they should be there to baby their kids...even when they are adults. I can't help myself. This is worse than the swishing stuff....and I really can't help myself with my daughter..... I know it must drive her nuts....lol....

Oh...and finally.....not to freak you out but just so you will be prepared. about one or two weeks after surgery I got the sensation I had to go to the bathroom the old way. Eventually I went and sat on the toilet and...well....apparently your rectum and any remaining colon still makes mucus...and every so often it will make you feel like you have to go...and when you do.....that mucus will come out. For me it happens once every two weeks. They told me about it.....but I didn't really understand it until it happened... AND...with my colostomy....if my stoma has anything stuck to it....it won't work. It cramps but won't let anything come out until I clean it off..... Its OCD and a clean freak!!

I am thinking of you and sending lots of healing thoughts your way..... Take care of yourself.

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Posted By : Plucky - 10/4/2017 12:39 PM
cupcakespinkgal said...
That's exciting, sounds like you are ready!

I wear the Coloplast Mio. It s by far my favorite of all the appliances I tried!

Good luck with surgery and recovery!


Thanks CPG! I'm excited and nervous--still have moments of "OMG maybe I need to re-think this" because my freaking colon has switched from lots of blood/very little stool, to lots of stool (semi-formed) and very little blood. My colon is such an a-hole!
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : Plucky - 10/4/2017 12:43 PM
Bmanningco said...
I wish you good luck with the ileostomy. It will feel like a life-saver after the pain i'm sure you have been in daily. I had an emergency temporary (ha) ileostomy in November due to a fistula. It was a life-saver but it hasn't been fun. I am not responding to Remicade so my temporary ileostomy is not going to be reversed anytime soon.
They caution on lifting more than 10 lbs for 4 weeks after surgery. I didn't follow that advice as I too have a small child. My ileostomy is now slightly herniated. I recommend researching products for your ileostomy prior to your surgery. i wasn't able to do that and finding products that work for me has been a constant issue. My inflammation has continued and I now have another fistula so I'm not sure what the future brings to me, but, I wish you the best.


So do you have a diversion ileostomy (still have your colon)? I'm so sorry about the fistulas--they are the worst and part of my motivation to have surgery is to (hopefully) avoid future fistulas and fissures. Wish you the best.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : Plucky - 10/4/2017 1:19 PM
clo2014 said...
Plucky,

I am being nosey.......what did they decide? Is it an end with the possibility of being either temporary or permanent?

I am so glad that your nurse marked you and you are trying it with your clothes and seeing how everything works. My nurse initially started to put mine a little far over on my left side. We had to move it. I am a side sleeper and was afraid that I would not be able to just sleep on my back....and I was right. I still flip over to my left side but thankfully it is just high enough that I don't squish it!

I love coloplast. I use a two piece system. I still pancake so I do things they (coloplast) will tell you not to do. I keep a little bottle of water by the toilet and when I empty my bag I swish it out. Drove my coloplast advisor nuts but I just can not not swish. I don't fill the bag up with water I just swish the bottom part. And they make these little tape strips...the strips help.hold the edges down on your bag. Most people don't need them but I....well I am just tall enough that I am constantly rubbing the edges of my bag loose....or maybe it happens because of all that swishing. ...hmmmmmm....

I hope your Mom is coming to help you. Sorry...but being a Mom...I always think that they should be there to baby their kids...even when they are adults. I can't help myself. This is worse than the swishing stuff....and I really can't help myself with my daughter..... I know it must drive her nuts....lol....

Oh...and finally.....not to freak you out but just so you will be prepared. about one or two weeks after surgery I got the sensation I had to go to the bathroom the old way. Eventually I went and sat on the toilet and...well....apparently your rectum and any remaining colon still makes mucus...and every so often it will make you feel like you have to go...and when you do.....that mucus will come out. For me it happens once every two weeks. They told me about it.....but I didn't really understand it until it happened... AND...with my colostomy....if my stoma has anything stuck to it....it won't work. It cramps but won't let anything come out until I clean it off..... Its OCD and a clean freak!!

I am thinking of you and sending lots of healing thoughts your way..... Take care of yourself.

Clo


Clo,
Sadly, my mother passed away in 2009 of breast/lung cancer. My younger sister is well-intentioned but a complete flake (and not domestic at all--she lives off taco bell and spends all her money on clothes). Plus she lives 10 hours drive away.
So no, I don't have anyone helping me besides my husband--he and our toddler will stay in a nearby hotel while I am in the hospital (and we have memberships to the zoo/aquarium/insectarium in NOLA so they can go do fun stuff) and he's off work until 2 weeks post-op. By then I hope to be on minimal pain meds and driving--I can't wait 4-6 weeks to drive! I would Lose. My. Mind. Being cooped up with toddler that long. CRS said I can drive when I'm feeling up to it (not loopy on pain meds).
I'd imagine your recovery was a lot tougher because your surgery was so dramatic (you were septic and almost died, right?)
You're not nosey! The plan is a total colectomy with end ileostomy. I want to try to have another baby, then I *think* I will have a second surgery to remove the rectum (um, a protectomy?). The j-pouch might be an option but I don't think I want to risk more disease/fistulas/fissures/hemorrhoids, etc.
I don't know the terms--what is "pancaking"? What is "swishing" and why do you do it/not supposed to do it?

And then, who pays for all the supplies??? I assume insurance pays for bags and such, but that I can use my HSA for belts and other accessories?
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : cupcakespinkgal - 10/4/2017 4:17 PM
Ha I know exactly what clo means about not suppose to swish! Some use a squirt bottle to squirt water in the bag and clean it out better. My ostomy nurse gave me a squirt bottle in the hospital but then said most manufacturers will tell you the inside coating of the pouch will be compromised or something and don't rinse. It doesn't seem to cause any harm, I think it can make the coating less slick? The bags are coated on the inside I think. I don't rinse often but do sometimes and it never causes an issue.

Pancaking is when the output piles up at the top of the bag or right on the stoma and sticks to the wafer. It is much more common will a colostomy. I have an Ileostomy like you will have and our output is more liquid so that is not a common issue.

Hopefully you will have a quick recovery since you are just doing the colectomy and leaving the rectum. For me even with surgical pain I felt so much better once my colon was gone. My body felt calm like it wasn't constantly fighting inflammation anymore
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

Posted By : NiceCupOfTea - 10/4/2017 6:04 PM
Good luck with the surgery, Plucky. I hope it all goes well!

Pancaking only happens with thick output. I got it occasionally, but it was rarely a problem like clo said. It may possibly be more of an issue if you sleep on your back, but as I've always been a stomach/side sleeper I never had to worry about that.

As for rinsing the bag out I never saw the point - you're only gonna get more output in it again in a short while :/ I just concentrated on making sure the tab was clean (the velcro bit which opens/closes the bag).

You should get the rectum removed at some point. If it just sat there gathering dust it wouldn't be so bad, but sadly it's still susceptible to IBD - and diversion colitis as well (the latter is caused by lack of stool passing through it; apparently the colon cells don't like being deprived of 'food'/energy that they can only get from faeces).
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Posted By : notsosicklygirl - 10/4/2017 6:06 PM
My insurance paid for everything. It depends on your particular plan. By the time I had surgery, I was already at my max out of pocket so everything was covered 100%. If I had the surgery before I had hit the deductible and OOP, I'd imagine I would have had to pay the 10% copay after the deductible was met.

I love the mio too, it was the best product I found. They didn't make a convex at the time, so I couldn't wear it unfortunately. They do make one now though. I had pancaking problem. I think it's a problem with convex too since it pushes in and leaves space there for stuff to pile. You can push it down of course.

My colon was pretty well-behaved leading up to surgery, but I wasn't eating much. It got bad immediately leading up to surgery day and I was so thankful I stuck to my guns. There was a time when I felt like I would make any excuse to back out, but ultimately i needed the surgery & it was the right decision for me. I am living so much better now. I think you will be happy to get your life back, to be able to do stuff with your toddler (maybe toddlers soon enough) and not worry about drugs, doctors and toilets. You will gain a lot of freedom. I think it's smart that you're leaving the door open for the j-pouch, but not too gung-ho to go that direction. You never know, perhaps things will be fantastic and you will feel confident about reconnecting some day. Having the option isn't a bad idea. You may realize the ileo works for you and there's no reason to reconnect, and then you can make it perm if you wish.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Posted By : U B Tough - 10/5/2017 8:17 AM
I love your attitude Plucky! It sounds like you have a very supportive hubby. I do wish I lived closer to help out as well. The idea of holding a toddler sounds heavenly to me!

I can't believe how fast your surgery is scheduled. I'd have to wait a minimum of 6 weeks before a date. Will you still be on Stelara?

A suggestion: try wearing the bag now with seatbelt to make sure it's in the right spot.

Thinking of you often!
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

Posted By : clo2014 - 10/5/2017 9:10 AM
Plucky,

UB has it right. Check it for seat belt comparability.... I forgot that one and it is very important. My seatbelt comes just below my stoma.. I guess I got lucky! (I have a portimplanted on my right side and when I am a passenger my seatbelt really really bothers it and me..lol)

On the supplies....if you max out on your insurance...try to make a three month order of things you need. A lot of insurances limit you to the amount that medicare would pay for...but they raise that limit if your doctor submits information indicating you need more. It's no big deal and medicare does allow you to order in three month spans. It just saves you some money....and in January-if your insurance is like mine- you can start over.....but then you have to pay your deductible. Just some thoughts. (Oh...my ostomy nurse helped me with the order some...but in the end it was my call...)

I too admire your attitude and positivity. You are a strong woman setting a good example for her child/children. (My children learned more from my actions than from all of the lectures I ever gave them....if I had known that I would have been very careful in my actions...lol)

I am very proud of you...you are a warrior.

Clo

Posted By : Plucky - 10/6/2017 4:50 PM
So I had to cancel my surgery.

My husband had a heart attack (38 yrs old) and has been on life support in the ICU since Wednesday. He is getting better and they took him off the ventillator and he is sort of conscious (heavily sedated).

I upped my pred to 30mg and I'm just dealing with it.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : cupcakespinkgal - 10/6/2017 4:59 PM
Plucky I am so sorry!! Hopefully your colon doing a little better helps out during this time. I'll pray your husband has a smooth recovery. Also thankful this didn't happen while you were already in the hospital!

Sending healing thoughts!
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

Posted By : NiceCupOfTea - 10/6/2017 6:09 PM
Plucky - I'm so sorry about that :/

38 is really young to have a heart attack - I hope they can find the cause and prevent it from happening again. Not much consolation right now, I know, but at least your husband survived it. An ex friend of mine had a heart attack in the summer and didn't make it. I wish I'd had the chance to make amends with him before he died.

Best of luck to you both.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Posted By : clo2014 - 10/6/2017 9:00 PM
Plucky,

Oh my gosh.....I am so very sorry. I am praying for you, your husband and your family during this time.

You have done your research so you know that you will be ok in a holding pattern. This will also give you time to ensure the surgery is what is required. You will also be able to be there for your husband.

My spouse had heart surgery last November. Plano Texas heart hospital is one of the best.... Dr. Shapira...I think that is the right spelling. I know it ends with an "a" and not an "o" as his office corrected me a couple of times.....he specializes in AFIB...and I can't remember the other doctors names......they were all good.... I know you probably don't live in the Dallas/Ft. Worth area...but maybe the info will come in handy... They can do so much to help....so take a deep breath and try not to worry your self into a flare....

Hang in there and remember to ask others for help when you need it. Hopefully his family is there and they can be there and help both of you.

I have learned that when a door closes there is usually another window or door available--so don't get discouraged. Hang in there my friend...

Sending lots of healing thoughts to you and your family. (((HUGS!!!!)))

Clo

Posted By : Plucky - 10/7/2017 11:35 AM
clo2014 said...
Plucky,

Oh my gosh.....I am so very sorry. I am praying for you, your husband and your family during this time.

You have done your research so you know that you will be ok in a holding pattern. This will also give you time to ensure the surgery is what is required. You will also be able to be there for your husband.

My spouse had heart surgery last November. Plano Texas heart hospital is one of the best.... Dr. Shapira...I think that is the right spelling. I know it ends with an "a" and not an "o" as his office corrected me a couple of times.....he specializes in AFIB...and I can't remember the other doctors names......they were all good.... I know you probably don't live in the Dallas/Ft. Worth area...but maybe the info will come in handy... They can do so much to help....so take a deep breath and try not to worry your self into a flare....

Hang in there and remember to ask others for help when you need it. Hopefully his family is there and they can be there and help both of you.

I have learned that when a door closes there is usually another window or door available--so don't get discouraged. Hang in there my friend...

Sending lots of healing thoughts to you and your family. (((HUGS!!!!)))

Clo


Clo--
Thank you...
He's at OLOL in Baton Rouge and I feel they are giving him exceptional care (and as a chronically ill patient whose been to hospitals across the country I do not give false praise).

He's awake! His long term memory is quite good! But his short term is very poor and he is still very hazy and out of it. Its so hard to see him this way. And the toddler is very upset because he's gone and she knows he "has a boo boo on his heart" and poor sweet baby is worried and I havent seen her much (usually we are together 24/7) and it's just... Hard.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : notsosicklygirl - 10/7/2017 7:53 PM
I am so sorry to hear this. I am happy he's awake. Healing is a long path but it sounds like he's headed in the right direction. I hope he gets better quickly so he can be with you and your toddler.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Posted By : clo2014 - 10/7/2017 8:58 PM
Plucky,

My niece was in BR and she said that hospital does have really good ratings for care...so rest as easy as you can knowing they are doing everything they can for him. He is now awake...so you all can slowly start moving forward.

Just a thought....you might want to let the nurses there know you have Crohns. When I did...they were very accommodating on seeing that I had crackers or 7-up if I needed it... Or using their fridge for my snacks from.home....

The short term memory....it may take a little while to kick back in. He will probably be frustrated. They will work with him on that. It is difficult for the caregiver (you) during this time and even later on. There will probably be days when you know you said or did something and he will not remember.. And then you will get confused... Hang in there...it does get better!! I run around looking like big bird sometimes...I have notes to remind me to remind him....lol... The meds he is on can also make him forgetful...hazy and just out of it. Once they lower the dosage or leave some of them off...he may be able to focus more. We also played classical music....Mozart, Hendley, Bach...its supposed to stimulate learning and memory. Beethoven for lower blood pressure.

Heart attacks are such scary things. They impact not only health....they impact everyone and everything. Even the things you never thought about before...Now...with my spouse...I find that I can't fight with him like I used to. Let his face get red, or have him take a deep breath or touch his chest...and suddenly it isn't as important as just being with him. 36 years and I still just want to be with him.... Of course sometimes I really miss waving my arms in the air and screeching like a banshee...but we both have given up things we really miss. He misses caffeine and I sometimes miss acting like a fool.... Lol..

Toddlers are so loving and honest. It probably is hard on both of you...all.of you actually....to be apart. Try to consider this an opportunity to learn new ways of doing things and keeping in touch. My daughter has one of those apps that show your face when you talk....maybe...if you can....you can use that so your toddler feels connected. You will need to explain the hospital will not allow little people in to see the people with boo boos so this is the best way to do it. It will be a scheduling challenge for you. I don't know who cried harder when my daughter did it...her, her kids or the person at home with her kids. After a few tries...and doing it multiple times a day it got easier and better. (She used an old phone and used some Trac phone service for the baby phone part...just a thought) and if not just calling lots seemed to help. Her toddler told her not to hang up. Put it on speaker so he could hear her breath. It broke my heart and made me laugh at the same time....and that was how they went to sleep...with the speaker on and they could all hear one another.

You all are in my thoughts and prayers!

Clo

Posted By : Plucky - 10/11/2017 4:02 AM
clo2014 said...
Plucky,

My niece was in BR and she said that hospital does have really good ratings for care...so rest as easy as you can knowing they are doing everything they can for him. He is now awake...so you all can slowly start moving forward.

Just a thought....you might want to let the nurses there know you have Crohns. When I did...they were very accommodating on seeing that I had crackers or 7-up if I needed it... Or using their fridge for my snacks from.home....

The short term memory....it may take a little while to kick back in. He will probably be frustrated. They will work with him on that. It is difficult for the caregiver (you) during this time and even later on. There will probably be days when you know you said or did something and he will not remember.. And then you will get confused... Hang in there...it does get better!! I run around looking like big bird sometimes...I have notes to remind me to remind him....lol... The meds he is on can also make him forgetful...hazy and just out of it. Once they lower the dosage or leave some of them off...he may be able to focus more. We also played classical music....Mozart, Hendley, Bach...its supposed to stimulate learning and memory. Beethoven for lower blood pressure.

Heart attacks are such scary things. They impact not only health....they impact everyone and everything. Even the things you never thought about before...Now...with my spouse...I find that I can't fight with him like I used to. Let his face get red, or have him take a deep breath or touch his chest...and suddenly it isn't as important as just being with him. 36 years and I still just want to be with him.... Of course sometimes I really miss waving my arms in the air and screeching like a banshee...but we both have given up things we really miss. He misses caffeine and I sometimes miss acting like a fool.... Lol..

Toddlers are so loving and honest. It probably is hard on both of you...all.of you actually....to be apart. Try to consider this an opportunity to learn new ways of doing things and keeping in touch. My daughter has one of those apps that show your face when you talk....maybe...if you can....you can use that so your toddler feels connected. You will need to explain the hospital will not allow little people in to see the people with boo boos so this is the best way to do it. It will be a scheduling challenge for you. I don't know who cried harder when my daughter did it...her, her kids or the person at home with her kids. After a few tries...and doing it multiple times a day it got easier and better. (She used an old phone and used some Trac phone service for the baby phone part...just a thought) and if not just calling lots seemed to help. Her toddler told her not to hang up. Put it on speaker so he could hear her breath. It broke my heart and made me laugh at the same time....and that was how they went to sleep...with the speaker on and they could all hear one another.

You all are in my thoughts and prayers!

Clo


Clo, you are such a huge source of comfort and knowledge in any/every situation. I would love to meet you, hug you and thank you. XO
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : Plucky - 10/11/2017 4:17 AM
UPDATE:

Thank you all for thoughts and prayers.

My husband is miraculously out of ICU and his memory is coming back--he sounded like himself yesterday! It is truly a miracle.

They did a cardiac catheter on him Monday and found no blockages. He hasan enlarged heart/cardiomyopathy but nothing to explain his arrythmia (v-tach to v-fib) and collapse. His blood work looks good--cholesterol is good, etc. He is very large at 6'6" and 430 lbs but very active--even with risk factors nothing explains his sudden cardiac arrest at age 38...

Except...

It appears to be genetic.

His (slightly) older brother followed the exact same script and is still alive today because of the defibrillator implanted on his heart about 10 years ago.

I do plan to change husband's lifestyle including regular meal (he often skips meals) with proper macronutrients and calories (he doesnt eat half the calories he should and that slows the metabolism and makes weight loss difficult or impossible). He must cut down hours at work and take care to find healthy ways of managing stress.

It's a miracle he's alive. The cardiologist said "if you had 9 lives then you just used up 8 of them".

For me, I found a way to have the surgery this Tuesday Oct. 17th. I need off the pred and relief from symptoms.

However...

Yesterday I felt poorly. Tired. Colon hurting. Hard time making it to the toilet.

Then...

I got the chills and spiked a fever of 102.3 °

I called on-call GI and asked about c.diff and if I had to go to the ER last night--I didnt feel up to it. He said I could wait. I had hoped that fever would be gone this morning but it's still 100.2° so I suppose I'll havevto go get tested for c.diff in the ER today.

Freaking life and it's curve balls...
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : notsosicklygirl - 10/11/2017 9:38 AM
That's crazy. You should go get checked out. Let us know how it goes. I am happy that your husband is doing so well, but it's scary to have that happen and he's way too young... It would be nice if you could get your colon stuff handled, but I guess you have to go with the flow at this point. Too much is happening at once.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Posted By : clo2014 - 10/11/2017 9:00 PM
Plucky,

I was so very glad to see that you checked in. I was preparing to drive from Dallas to BR , go to the hospital and start running down the hall screaming Plucky! Are you laughing yet?

On the Defibrillator....my cousin had the very same thing happen....and it was ruled genetic too. This happened in 1970?....very long time ago. She was always tired as a child and they could never figure out what was wrong with her. Then she just went down one day...but she regained her memory.... So no worries.

They have made such improvements! When my spouse was in the hospital they did a defib as an outpatient. I think the gentleman was there for a total of 36 hours. He was in the room next to my husband. He did really well. If you go that route please research how many that specific doctor has completed yearly. Hmmmm..I wonder how they classify that as outpatient......

On your surgery.....if needed go to ER. Your GI will test you for everything prior to surgery. Well...mine did so I am assuming. Maybe someone else has experienced something different. Please try to get some family to help you prepare and to help you afterwards. My surgery was September 11 2016 and my spouse had heart surgery November 8th. What a challenge. Two old farts shuffling around trying to help one another...

I too appreciate you so much. If you are ever in the Dallas area you should let me know. We can meet for a drink....tea....coffee...soda...water...lol..

I often think that if all of us lived close to one another we could help each other so much. We could solve the worlds problems...lol...

You hang in there!

(((HUGS)))

Clo

Posted By : Plucky - 10/12/2017 12:24 AM
Update:
Thanks NSSG and Clo (and everyone sending their warm thoughts an prayers).

So my fever broke yesterday morning and was back to normal by 8am. Thus, I didn't bother with the ER or getting tested for c.diff. My GI did test me but that was last week before 'ish hit the fan.

My sister was here but left yesterday. Husband is scheduled to have defibrillator implanted today @ 4pm--yes it is usually an outpatient procedure. He should be released on Friday. My aunt + uncle arrive on Saturday.

My surgery is scheduled for Tuesday in New Orleans--tricky because it's 1.5 hr drive from my house. Our toddler will not be pleased that I'm gone. But at least my husband will be home--however aunt + uncle will be caring for her so husband can rest. I will probably be alone in the hospital most of the time, which is fine by me--I look forward to sleeping! I'm freaking exhausted.

Posted By : notsosicklygirl - 10/12/2017 9:50 AM
I am so happy things are working out. I wish your husband an easy procedure today. It's going to be tough having surgery and being away from your toddler, but in the bigger picture, the surgery will give you the ability to be healthier, happier, and able to do more with your family. The long-term is likely to give you your life back, free you of drugs and doctor appointments. Of course you still have to do routine appointments, but it's so much less restrictive. You can go wherever, whenever.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Posted By : clo2014 - 10/15/2017 9:52 PM
Plucky,

Checking in to see how you all are doing. I know that surgery is quickly approaching and your husband had his procedure. I hope and pray everything went well for him and that everything goes well for you.

I know you have so much on your plate. Hang in there....it does get better.

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Posted By : Plucky - 10/16/2017 2:40 AM
clo2014 said...
Plucky,

Checking in to see how you all are doing. I know that surgery is quickly approaching and your husband had his procedure. I hope and pray everything went well for him and that everything goes well for you.

I know you have so much on your plate. Hang in there....it does get better.

Clo


Thanks Clo!
Yes, husband had his defibrillator implanted on Thursday and came home from the hospital on Friday! Unbelieveable--it's an absolute miracle. He's resting and slowly getting better but his short term memory is still not what it was--I'm told this should improve in coming weeks.

I've been SO BUSY! My sister left in a cloud of smoke on Wednesday (I love her and am grateful she came to help but good riddance) and I had no help until my aunt & uncle arrived Saturday evening.
My toddler and husband adore aunt & uncle so they should all get along fine in my absence.
I'm up and down all night due to toileting & trying to get toddler to sleep in her own bed. I'm beyond exhausted after these last couple of weeks and I can hardly wait to be in the hospital so I can sleep (I can sleep through really any noise but will take ear plugs/headphones).
I just need to be cleared by my PCP for surgery today. Then barring further catastrophe, I'll have surgery on Tuesday! It's a bit scary, but I am so hopeful for a good outcome--your thoughts and prayers are appreciated. Hugs Clo!
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : gypsyfp - 10/16/2017 8:54 AM
Wow!
I just read through this whole thread right now and I have to say, Plucky, wtefffffffffffffffff
You've been through so much!
I really hope life can cut you a break with your surgery.
I'll be thinking of you tomorrow and I hope you update when you can.
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

Live as if you liked yourself, and it may happen. -Marge Piercey

Posted By : Plucky - 10/16/2017 6:56 PM
Guys!
My surgery is tomorrow afternoon! I'm kind of freaking out with excitement and nerves! I'm also kind of hating the bowel prep (miralax + gatorade) but it's not nearly as bad as Golytely--I thought I might die from that prep.

Things I learned today--I'm more anemic, hemoglobin is 9.1 and that sucks. And I've lost 12 pounds in 2 weeks (but it's ok because I'm a bit heavy to begin with thanks to prednisone and not being able to workout). Despite these things I still feel strong. I'm packed. Will shower in the morning. Now I've just got to finish this bowel prep...
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Posted By : clo2014 - 10/16/2017 9:13 PM
Plucky,

The bowel prep.....well I didn't/couldn't do that so I was spared that part. However I did the Golytely before that one time and it was truly awful. I ended up in the ER on that one. So glad you weren't asked to do that one.

I never thought about how others had their surgery....I was already in the hospital for almost 3 months before they went in and did mine... Things moved so quickly. Once the surgery was over....the first day I spent clicking the automatic pain med dispenser....and it frustrated me so much I made them take it away. (It should have a panel that tells you how long before your next dose...instead you are clicking away and nothing is happening) The second day was a little better....and every day thereafter it just got better for me. There is pain. There are challenges. It is doable so don't freak.

I hope that your Aunt or Uncle will be there with you. One at home for hubby and kids with the other there with you. It is nice to have someone there to make sure everything is going well.....and who has a louder voice.....for when you want a drink, pain meds, or a new bag.....lol... Actually they are in there checking on you frequently...I just wish you had someone with you right before, during and after.

You will be in my thoughts and prayers. Take care of yourself. Try to check in when you are able.

Please know how very special you are to everyone.

Lots of hugs!

Clo

Posted By : clo2014 - 10/17/2017 9:42 PM
Plucky,

Thinking of you and hoping everything went well today.

Sending healing thoughts your way.

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Posted By : U B Tough - 10/18/2017 6:36 AM
Hi Plucky,

You've been on my mind all week but it's only now that I read the entire thread! Oh my. What a ride you and your family have had! Im so sorry but glad your hubby is home and on the mend. It must have been such a scary time. You've handled everything like a champ!

Wishing you well. Check in when you can.

thinking of you soooo much.

xo

P.S. I could actually see Clo running down the wards yelling "PLUCKY, WHERE ARE YOU???!!!!" That makes me smilesmile
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

Posted By : Plucky - Yesterday 9:18 PM
Guys!

I DID IT! I'm an ostomate! Surgery went very well, was laproscopic with a bikini incision in lieu of the midline incision, and only took 2 hours vs. the usual 3-4 hours. Surgeon said my colon was on of the worst he's seen, like in the top 20% of the worst cases, so that is very validating. And I saw the diseased portion next to the healthy portion and the diseased portion looked like chopped liver. Gross, eh?

I'm healing beautifully as far as I can tell. I went without any pain meds for 12 hours today and was up and walking around! I ate solid foods (low residue) for every meal today and that feels like a bit much, but I was starving after 3 days (really 3 weeks) of mostly liquids. I will eat less and eat smaller meals. But my stoma is working great! It's cute--perfectly round, on the smaller side, not flush but doesn't stick out too much. I tried the sensura mio one piece with the filter today and I don't like it. I liked my first one piece bag w/o the filter better, but I believe I will ask my ostomy nurse to help me try a 2 piece system tomorrow--hoping my skin doesn't break down from frequent changing but I detest this bag--debri gets caught on my stoma and the filter and I have to rinse the bag each time I empty and it makes a freaking mess. Ostomy nurse says I probably don't wantbto try a 2 piece yet but I really think I do. Talked to Coloplast and Hollister reps for samples so far and hoping ostomy nurse spoke with Convatek as well.

I do feel much better with the colon gone! It's incredible not to have to jump and run to the toilet. And I have more energy (also owing to corticosteroids).

Gotta go, shower time! XO
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

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