Failing Stelara, Opting for Ileostomy

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clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 10/5/2017 9:10 AM (GMT -6)   
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

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 315
   Posted 10/6/2017 4:50 PM (GMT -6)   
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

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1529
   Posted 10/6/2017 4:59 PM (GMT -6)   
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!

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9928
   Posted 10/6/2017 6:09 PM (GMT -6)   
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)

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 10/6/2017 9:00 PM (GMT -6)   
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

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 315
   Posted 10/7/2017 11:35 AM (GMT -6)   
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

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15134
   Posted 10/7/2017 7:53 PM (GMT -6)   
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.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 10/7/2017 8:58 PM (GMT -6)   
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

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 315
   Posted 10/11/2017 4:02 AM (GMT -6)   
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

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 315
   Posted 10/11/2017 4:17 AM (GMT -6)   
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

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15134
   Posted 10/11/2017 9:38 AM (GMT -6)   
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.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 10/11/2017 9:00 PM (GMT -6)   
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

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 315
   Posted 10/12/2017 12:24 AM (GMT -6)   
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.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15134
   Posted 10/12/2017 9:50 AM (GMT -6)   
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.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 10/15/2017 9:52 PM (GMT -6)   
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,

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 315
   Posted 10/16/2017 2:40 AM (GMT -6)   
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

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 428
   Posted 10/16/2017 8:54 AM (GMT -6)   
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

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 315
   Posted 10/16/2017 6:56 PM (GMT -6)   
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

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 10/16/2017 9:13 PM (GMT -6)   
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

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 10/17/2017 9:42 PM (GMT -6)   
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,

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 10/18/2017 6:36 AM (GMT -6)   
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.

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 315
   Posted 10/19/2017 9:18 PM (GMT -6)   
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

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 678
   Posted 10/20/2017 8:14 PM (GMT -6)   
Plucky,

Yea!!!!!!!

I was so very glad that your surgery went well, that you were up and walking and clear headed enough that you posted!!!

I want to fist pump in the air.....do the happy dance..... I am so very very happy for you!! Gosh....you are doing so much better than I did!! I swear the positive attitude makes a huge difference. When I had my colostomy a new doctor came in (thankfully while my CRS and GI were there), asked how my colostomy went and then he proceeded to tell me how sorry he was that I had a colostomy. My GI and CRS ran him off in the nicest way possible and proceeded to talk to me about the difference a positive attitude can make. (In healing and having future flares....) I know they are right and I am so happy that you have that wonderful positive outlook.

So....are you going to name your stoma? Lol...

The sensura mio one piece with the filter....it is not one of my favorites. I prefer two pieces. I can swish and I can take the bag off because stuff gets stuck on my stoma and it drives me crazy! They say there are no nerve endings in your stoma....but I dunno....mine gets itchy if stuff is on it...and if there is a lot of stuff on it it just refuses to work at all. I get a hot flash and cramps and then I know. So the two piece allows me to pop the bag off and wipe it off as needed. I love the moldable convatec - except the outer edge of the wafer is large and it is really sticky and hard for me to get off. But it does not come off and you don't have to use scissors...The Hollister caused me to break out. The coloplast brand two pieces usually work well for me (but I don't like the circle filter). M9 is works for the smell.

Keep up the walking. They will probably give you this huge Velcro "belt" to go around your stoma/waist. I thought it was a pain...wore it at first....didnt wear it...lifted something and ended up with a small hernia.... BUT you had laparoscopic so that may not apply to you....

Wow on the damage......it's funny how you just know that it is bad in there and then you get the pics and you get that validation. (And sorta grossed out but you can't stop looking....lol)

Congratulations on a successful surgery!!!

And you husband was up and about also....that is wonderful!!! I hope the good things just keep coming!

XO
Clo

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3488
   Posted Yesterday 7:16 PM (GMT -6)   
Hi Plucky, I m sorry I’m late to this post And I’m so proud of you!!!!! Are you in any pain??? You are tougher than me!

I have failed Stelara too, so now im going on xeljanz.. I’m waiting my insurance to approve, right now im in terrible pain and so much blood, so I started steroids today both oral and rectal. Nothing has helped, but I will keep trying, I’m in the same boat as you and again, I’m sorry for this late response I’m usually on the UC board. Hugs to you!!! Oh yes and you’re husband, my my my, I will truly , for your whole family, pray for strength and healing!!!!!
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara , not working. Now trying Chinese herbs and love them so far!Took rafaximin for SIBO, worked awesome!

Post Edited (therearemiracles) : 10/21/2017 7:22:50 PM (GMT-6)

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