some general questions

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Eva Lou
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Date Joined Sep 2006
Total Posts : 3437
   Posted 10/9/2007 9:34 AM (GMT -6)   
hi everyone! well it's getting closer- my pre-ops are set for Oct. 22. I've been sick the past week too, big time... I'm hating it right now, just trying to keep it together until surgery. I have a couple easy questions for all of you- so I change my bag about 2 times a week? And do you change your wafers every time you change your bag also? I'm planning to do the old "everything off, in the shower" changing routine- I have no qualms about poop running down our drain! And the dietary thing- I'm told there are no restrictions on diet, which I believe. However, my surgeon did say the only restriction is the volume of food, per se- since the stoma opening is fixed, you wouldn't want to eat a 5lb. salad! But I have noticed more than one person on here moan about eating pizza- I LOVE pizza!!!! And I need to gain weight badly also- I can't wait to get home & start eating again! A "normal" lunch for me is a sandwich & some chips- is this too much food for my stoma? And is the pizza thing the gas issue? I know the main thing is chew, chew, chew & drink plenty of fluids with it. I'm a little nervous about blockages. I guess I'm a little nervous overall- I know I will feel better & the thought of living with a bag has definitely become preferable to the way I'm "living" now... but it is a little scary. Did anyone have serious complications from surgery? Or after surgery? I know I've been sort of pesty lately, but any info is so helpful... thanks!!!!! I'll be back online in the afternoon!
diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 10/9/2007 11:44 AM (GMT -6)   
Just from my experience.
 
>so I change my bag about 2 times a week?<
 
Thats about right. Some last longer than others. It'll all depend on how your skin handles it.
 
>And do you change your wafers every time you change your bag also?<
 
Yes. Pretty much have to. Most likely you won't need to change the actual bag ( depends on what type you are using) before the wafer.  I've put the old bag back on after changing the wafer, but only because the wafer didn't last more than a day or so. Again, it depends on your skin.  I usually toss the bag with the wafer though.
 
>However, my surgeon did say the only restriction is the volume of food, per se- since the stoma opening is fixed, <
 
I've eaten anything. Pizza, steak, doesn't matter. I've never been told about the opening of the stoma. Heck, i had to swallow this HUGE pill looking thing that was actually a camera. If that thing made it through my stoma anything would. I was always told....CHEW. Maybe thats what your surgeon was saying. The food needs to be broken down pretty well, so large CHUNKS might be tough.
 
>Did anyone have serious complications from surgery? Or after surgery?
 
My only problems came from stopping all my meds so quick. Stopped everything except the Pred, but slowly came off that. I had so many side effects from the meds that it seemed to be even worse after the surgery. How long have you been on 60 Pred?  I was on 60 for about 2 years. Coming off it was just as tough as being on.
 I recently had a skin reaction to the tape on the wafers i was using.  Just changed wafers and it's getting better.
 
 I never wanted surgery. Never wanted a bag. But just like you said, it's MUCH better than the way i was living. It'll take time but you WILL notice that down the line.
 
Good luck.
 
 
 
 
 
Crohn's for what seems like forever
Bagged in August 2006
 
We cheer for 2 teams. The Red Sox and whoever is
playing the Yankees.


Stoma Girl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 10/9/2007 2:49 PM (GMT -6)   
Hey :)
I wear a one-piece drainable bag, so I change mine every three days, all of it and clean the skin and spout.

The only slight complication I had was that I couldn't sleep because I kept worrying; and because I was used to sleeping on my front, which I can't do any more. Other than that I'm fine and a lot better off :)

As for eating, I've eaten everything I normally would, the only differences I've found is in odour and colour (e.g. with tomatoes) and some things affect the consistency.. like alcohol makes it thinner and so on.

Peace out :)
Never Give Up, Never Surrender
 
.. Stoma Girl ..
.. Ileostomy following Crohn's Disease, 2007, aged 18 ..
.. Time between diagnosis and operation - one year ..
.. Journal of stoma-affected life : http://stomagirl.livejournal.com ..


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/9/2007 4:20 PM (GMT -6)   

ya know, I get so happy when I read these replies I truly can't wait to just go under the knife & get on the healing side! I know I will be much happier, despite the "body image" issue... It's not like I'm some swimsuit model anyway, I'm a 37 year-old married mom of one! gimme a break.... I'm frightening enough as is in a bikini! Slice- I've been on 60mgs of pred now for a few months, which is too long for me. Every time I've started pred in the past (this is my 3rd? 4th? course) I start at 60, then have been able to taper, with mixed results. This time however, I go below 60mgs & BAM! Bloody mess. I would like to get down to about 30mgs just prior to surgery- I have one last Remicade infusion this coming Monday, which I don't really want to do but I need to try to stabilize myself- like I said, I've been SICK. Even the high pred dose is doing next to nothing, I'm still bleeding & going 15+ times a day. I'm going to try to taper after the remicade infusion. My surgeon said I could stop the Asacol & Imuran the day of the surgery, & they will start a pred taper right off the bat. I know it sukcs, pred tapers- it does feel worse than actually being on the drug. Stoma Girl- kudos to you for undergoing this at your age! I don't know if I'd be able to do it when I was 18. It sounds as if you're doing great with everything- it's so uplifting to read the positive replies! Thank you both!!! tongue    PS- I can't wait to eat... the Ensure liquids are NOT cutting it!


diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/9/2007 7:09 PM (GMT -6)   
Eva,
You are going to feel so much better after this surgery. Here are some answers to your questions:

So I change my bag about 2 times a week?
I get about 8 days wear with my wafer and use a two piece appliance with a cloth covered drainable bag. The bag gets worn after about 4 days, so I unclip it and put on a fresh bag for the remaining 4 days.

And do you change your wafers every time you change your bag also?
Not me. I take everything off every 8 days and take a shower in the buff and clean the skin around the stoma really well. I also shave the little blonde hairs around the stoma, so the wafer doesn't pull them out one-by-one. You'll also want to do that before your surgery, because that first wafer change really hurt, because I felt like I was waxing my belly!

And the dietary thing- I'm told there are no restrictions on diet, which I believe.
I have no restrictions to my diet. I eat everything and anything and have never had a problem.

A "normal" lunch for me is a sandwich & some chips- is this too much food for my stoma? And is the pizza thing the gas issue?
That lunch is fine. I think it was Summerstorm who ate pizza right after her surgery and was in pain. I think that was because it was so soon after surgery. I eat pizza all the time and have no problems.

I'm a little nervous about blockages.
I've heard that food is not usually the cause of a blockage. Blockages mainly happen if the intestine is kinked or if there is scar tissue from the UC or Crohn's that causes a blockage.

Did anyone have serious complications from surgery? Or after surgery?
My stoma took 10 days to work, so I vomited a lot after surgery and ended up severely dehydrated, but that was fixed with several days of I.V. fluids.

Hang in there, you're almost all done with being sick!

Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/9/2007 7:30 PM (GMT -6)   
yes it was me with the pizza, lol. And the problem was i ate it about 9 days after surgery. And it was really bad gas. I think if i had some sense and thought that out i would have waited a few weeks, lol.
I haven't eaten any pizza though, (mainly because before i had the sugery one of the only things i could eat was pizza, and i am tired of it!) but i have eaten garlic bread and other stuff with red sauce and no problem now. For the first six weeks you will be on a low residue diet, that just means don't eat things like broccoli, or cabbage or corn things like that. After that its whatever, just be careful with nuts and popcorn. I would suggest that if you are gonna eat something that causes a lot of gas, like pizza or fish, that you do it at home and try just a little. But i eat fish all the time, and everything else.
i change my bag and wafer on Sunday and Thursday. i could get longer wear out of them, but those are the two days that i always have a long enough block of time where my son is elsewhere to take a good shower and not have to rush changing it. THe longest i ever wore one was 8 days, and it was fine, but i just like to change them more often.

Churchlady is right about blockages, they usually arent' caused by food. but be sure you chew lots, or i just cut my food into tiny pieces and that way if i dont' get a piece chewed good, it's already small.
I lost a good bit of blood, down to 6.1 and had to have some blood the night of my surgery, and then that set me back a day, and a random fever, that later was determined to be a faulty thermometer, also set me back a little, lol. After that i was doing fine at home (until the pizza, lol) then after i recovered from that, i was ok, i got dehydrated and had to go get fluids and realized then how much water i needed to drink.
I think the thing that was the hardest for me was that i was on 6-mp (and you are actually supposed to taper off that and immuran) and on pred, and i just quit them both.
Stomagirl-i sleep on my stomach, after abotu two months it was easy. I couldnt' sleep at first either because of that. If you are worried about leaks sleep with a towel or waterproof pad under you. EvaLou, try to get the pad from your room at the hospital.
Now that i have just talked forever, lol. I think you will feell TONS better when you have your surgery, just think of all the great things you will be able to do! I got to go an a field trip today, i never could have done that before, if you ever get depressed, just think of soemthing you CAN do, you will be suprised what small things will make you so happy, and that will help alot.
Good luck! and dont' worry you are NOT pesty!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/9/2007 8:25 PM (GMT -6)   

Everyone else here has pretty much covered all of the basics, I think.    The only thing that I can think of is that a pillow will be your best friend for a couple of days out of surgery.  Esp when trying to move.  If you hold it against your stomach with just slight pressure, it really does help.  Also, if you feel a sneeze coming on or have to cough, or if you get nauseous -  remember this:  HUG your pillow!   I too tried the waterproof pads when I got home - just in case.  Helps build confidence and you can get some much needed rest since you can't get much in the hospital. 

I also would be careful with stuff that is more difficult to digest just until you can become more accustomed to how your stoma will work.  Experiment with small portions and drink lots of fluids.

Best of luck to you and please ask any questions that come to mind.  That's what we are here for.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/10/2007 6:35 AM (GMT -6)   
Eva Lou,

This wasn't addressed in your question but I want to make sure your surgeon has provided for an ET nurse to see you before the surgery and help you mark a stoma site. I think the stoma site, and of course the quality of the stoma itself, are so important for being able to deal with your ostomy afterwards. You really want to make sure it isn't too high or too close to your navel, it can really interfere with wearing clothes and the navel makes it harder to pouch.

I'm sure your surgeon addressed this, but just wanted to remind you to ask if he hasn't.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP, hoping for a long remission from this last surgery. 
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/10/2007 4:53 PM (GMT -6)   
thanks everyone! I feel as ready as I can be, mainly thanks to all of you being so forthcoming. This board is great for pre-op people- I have a check-list of things to have in place before I come home already! Waterproof pad #1... Judy- I did meet with a stoma nurse already & we briefly discussed placement at my surgical consult- I also talked with my surgeon. He puts the stoma about an inch or so below the belly button, on the right side (looking down at your own tummy), about 2-3 inches to the side of the belly button. He makes it protrude about 2-3 centimeters, so it's easier to care for & the output doesn't spill onto the skin. I asked about the actual size of the stoma, & he said he can taper them a bit if they're huge. I also have a day of pre-op medical work coming up, & that's when I'll meet with my surgical coordinator. And maybe another stoma nurse then??? But I plan to be very definite about placement- I tend to wear pants that stop under my belly button, & when I tried on a bag at the consult, the stoma nurse commented on how I may be able to see the wafer over my pants if I wear them that low. I never tuck in shirts though, so I don't see how it will matter. I think I've lucked out in my choice of surgeons- Dr. David Schoetz at the Lahey Clinic in Burlington, Massachusetts. My own GI thinks he's one of the best in the country, & other GI's have highly recommended him to me also. I recently found out he was the President of the Amer. Assoc. of Colon & Rectal Surgeons (something like that...) for 25 years, so I'm sure I'm in good hands. I'm pretty pro-active too- that stoma site is gonna be where I want it to be! Now the surgical pain issue is the only thing freaking me out! eyes
diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/10/2007 6:12 PM (GMT -6)   
Eva,
Please don't worry about the pain. Trust me, they keep you very comfortable in the hospital with an I.V. morphine drip for a couple of days after the surgery, and then they'll give you pain pills to take when you go home, so you will not have to deal with much pain.

I'm glad that you have an excellent surgeon! Sounds like you are in good hands.

:-) Cecilia

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/10/2007 8:23 PM (GMT -6)   
yes those pills and that morphine are your friend! lol. I also ask for phenogren, to help the nausea from not being able to eat at first and the pain pills and that helps alot too.
the top of my wafer sticks out a tiny bit, but the only way someone could see it is if i strech to get something from very very high (or that time my pants slid down, lol) but if people see it they would just think it was a bandaid or something.

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/11/2007 10:23 AM (GMT -6)   

I do have a pretty high tolerance for pain, & after the first couple days how bad can it be??!?! I'm not looking forward to getting up & walking the day after surgery but I know it's gotta be done. My surgeon mentioned an epidural as an option also- he must've meant after the surgery, as obviously I'll be out cold during it! There is more chance of swelling with an epidural though.. I guess these are things I'll talk about with the anesthesiologist at my pre-ops. I'm not planning on an epidural- I didn't even have one for childbirth, for gosh sake!


diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/11/2007 10:48 AM (GMT -6)   
When you meet with your surgeon, make sure and ask what pain management options you have.

I was given the option of an epidural, a pump, or shots. I ended up going with the epidural for the first few days (they won't let you keep it in long) and it was the least post-surgical pain I've ever experienced (I've had 6 resections). After that they went with the pump (usually a type of morphine based drug, dilaudid for me), and I made sure to have in my chart that I could have more pain meds as needed.

There can be a problem with the epidural and it did happen to me, but was worth it not to have that horrible, initial post-surgical pain. If the epidural moves, or doesn't go in exactly straight, you may have numbness down one or both legs instead of just your abdomen. If that happens, you have to stay in bed (usually with a catheter) because you're at risk for falling.

In my case, after a couple days they reduced the amount of drugs for a couple of hours (make sure you load up with other drugs first) and then when they raised it again, the numbness was only in my abdomen so I was finally able to get up.

The earlier you get up and start walking, the quicker you heal. But I still believe it was worth not feeling that initial post-op pain.

By the way, I'm not trying to scare you, just prepare you, and admittedly I don't deal with pain well anymore, it's getting old.


Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP, hoping for a long remission from this last surgery. 
 
 


Stoma Girl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 10/12/2007 2:08 AM (GMT -6)   
They gave me an epidural, morphine pump and paracetamol-type drugs for the first few days, then took the epidural out followed by taking me off the morphine. I took paracetaml and tramadol for a few days but didn't really need them, I was absolutely fine pain-wise. Did help that I had a very cute male nurse around and wanted to seem like I was coping well and not in a pit of pain and despair :P
Never Give Up, Never Surrender
 
.. Stoma Girl ..
.. Ileostomy following Crohn's Disease, 2007, aged 18 ..
.. Time between diagnosis and operation - one year ..
.. Journal of stoma-affected life : http://stomagirl.livejournal.com ..


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/12/2007 9:23 AM (GMT -6)   
Eva,

Congratulations on your upcoming surgery. I am 8 weeks out and feel much better than I did before the surgery. Like you, I have a high pain tolerance. I found that refusing pain meds and focusing on walking helped me to heal much faster than the normal person. The first week was very, very challenging. I had surgery on a Wed morning. I woke up around 8pm that night and asked the nurses to take me off the pain medication and just give me a Tylenol PM to help me sleep. When I got up the next morning I was not loopy from pain medication therefore, I was able to focus on walking. I walked for 20 min. in the morning and 20 min in the evening while in the hospital. When I got home I walked 1 mile everyday and slowly built up to 3 miles. Now, I run 3 miles. If you can handle it, I truly believe that this is the fastest way to promote healing. I am not avocating that my philosophy is for everyone. But, I have had 4 surgeries and this is what I have found to work best.

I hope you have a wonderful recovery. Remember, this is Your body! You have the right to refuse anything you do not want. If you do not want your stoma to be in the middle of your abdomin, you have the right to say NO! This is your stoma. You can choose where it should be placed. Try your jeans on while you are at home and find a nice spot under your pants line. Mark yourself with an ink pen and tell your Dr that THIS is where you want your stoma! For me, that is 2 inches below my navel and slightly to the right of my navel.

I hope this helps.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 10/13/2007 5:54 PM (GMT -6)   
Eva Lou, I got an ileostomy on July 23. It is supposed to be temporary while my rectal surgery heals. My ileostomy starting working the very same day. I've had no real problems except for the allergic reaction to the Hollister brand wafers and paste. I eat pretty much anything I want. Today I chowed on leftover Chinese food from last night - cashew chicken and shrimp pad thai (spicey). I've noticed tomato sauce from spaghetti and pizza can be kind of smelly when I drain my pouch. Some people use hydrogen peroxide in their pouch for odor control. (I've never done this.) I use Hollister deodorizer and lubricant occasionally. Works pretty well. I do try to avoid skins from grapes, apples, potatoes, etc.. These I've read can cause a blockage as well as popcorn. I feel it's better safe than sorry.

I use a two piece. Maybe because I was told to use this by my HomeReach nurses. I've never tried the one piece. Convatec makes a nice product - especially the Moldable Wafer - no measuring of the stoma. Did anyone tell you your stoma will shrink within the first 6 weeks? Also, many of the products have alcohol in them, so be careful if you have sensitive skin.
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