J Pouchers with Crohns

[ameslouise]

I am wondering how many others are out there with a J Pouch that have been rediagnosed with Crohns.

Our situation is different than those without a J Pouch because our pouches are made from our small intestine. Flares affect us differently because small intestine inflammation can mean pouch inflammation - which manifests differently than small intestine inflammation that happens further up.

I am going thru a particularly bad time right now and would love to hear from other J Pouchers with Crohns Disease. I would like to hear your stories, what meds have worked for you, how you deal with the PAIN of having an inflammed pouch etc.

- Amy

 

[Nicole]

Hi Amy

I'm so sorry you're going through a rough time right now. I really hope you begin to feel better soon. I don't have a JP but I'm supposed to visit the Mayo Clinic in MN on the 28th of this month. I am a bit worried that they may advise I need one. I know it's not recommended for people with Crohns but I also have UC.

I have been reading quite a bit about infections to the JP and the right meds necessary to treat with it.
In the case of diarrhea, antibiotics—i.e., metronidazole (Flagyl) or ciprofloxacin (Cipro)—are usually successful in treating the pouchitis and always finish the entire course of antibiotics—even if you are feeling better.
If you feel you have blockage then try a clear liquid diet (i.e., chicken broth, Gatorade, Jell-O) for a day or so.
A heating pad placed on your abdomen might help ease the cramping—try not to burn yourself. And a hot bath is often helpful.

I hope the info helps some.

Feel well Amy.

 

[ameslouise]

Hi Nicole - Thanks for the suggestions. I am trying to eat low residue diet right now, get plenty of rest, etc. I just started taking Bentyl to control the cramping/pain and it has helped only a very little.

I had many good years with my j-pouch. I was originally UC, though there was some question at the end before I lost my colon as to whether I had UC or CD. I think it was Crohn's Colitis all along but at the time it looked more like UC so I got the j-pouch. I'm hoping to hold on to it!!

Hooe you are doing well, Nicole!!

- Amy

 

[Nicole]

I'm doing alright, Amy.
I'm still having symptoms and can't seem to get them under control so I'm still on sick leave.
Maybe you can tell me a bit of the process leading up to your surgery so that I know what to expect. What sort of tests you had done before they decided to operate and where did you have it done? Also, how much would a surgery like that cost?

Prices at the Mayo are really hot but I've heard that they're the best in IBD treatment. I just have to know how much $$ I'm going with. They can't say anything regarding that right now until they've seen me. So I'm trying to gather as much information as possible.

Let me know how you're doing, umm!

Take care.

 

[ameslouise]

Still waiting to hear from other j-pouchers!

 

[semicolon306]

well you know I had a J pouch, when they thought I had Colitis. Then after a obstruction (16 years later after the j pouch surgery) they started thinking Crohn's. Well blood test show I have the gene from crohn's. So they took an MRI to see how bad the crohn's was and found that my J pouch connected itself to my spine and fistula formed to my spinal cord. Not being sure that this could be numerous more MRI's and CT scans, all showing the same thing. Numerous doctors (15) they felt I needed to get it out. Right before my surgery they also found that might pouch might have been leaking from somewhere else into my body causing back pain, fatigue, and weakness. I was unable to stay up more then 8 hours, any time I could I slept. Well June 1st surgery to remove the pouch.

So I go see him after surgery I go see him for a follow-up appt and then found NO / ZERO / NONE / NADDA damn crohn's in pathology. So now they are NOT sure why this happened and if I do really have Crohn's or NOT. So needless to say I am on no medications and feel great, better then I have in YEARS.

So I do not know what I have or why, but all I know is I am better off now.

Comes to find out my J pouch never worked like most people, I normal I would go 10 - 20 times a day with severe leakage and pain. Oh well what causes pain, in turn causes strength.

I also found out that there are considering writing a paper on this, but not sure what they will right - LOL. Umm we have no CLUE, but he is better, LMPO

 

[ameslouise]

Hi Semi - Glad you are feeling better after surgery! I hope you can stay med free and continue to feel well.

Where are you in CT? I was raised in Fairfield County and my parents now live on the water in Milford.

- Amy

 

[semicolon306]

I am New London county, lucky enough to be near the casinos.

SO happy to be pain free and MED free, I plan on staying that way. I think if they want to put me on meds, I will NOT - TILL they know what I have.

 

[Clarabell]

Hi amy
I am am in pretty much exactly the same boat as u.previous colitis had my pouch for twelve years now and am not giving it up without a fight.its the constant fistulas that have the doctors thinking crohns.people on here really inspire me but not sure after all these years I could cope with losing my pouch xx

 

[ameslouise]

Hi Clarabell -

What meds are you on now? I hope there is something that can close up those fistulae!!

How long did you have your pouch before they re-dx you with Crohn's?

 

[Clarabell]

currently not on meds the docters want to start me on remicade and azotheprine but due to infection of fistulas they cant.It was only suggested I had crohns a couple of years ago and up untill that point I really felt I would always have my pouch. Have been in and out of hospital through the years with infections in my pouch but could always deal with this as my health at other times was fine.Over the last year or so has been really bad fistulas cause me no end of difficulty and I have a few.
How long have you had your pouch?
Do you suffer from fistulas?
xx

 

[semicolon306]

Clarabell, welcome to the site. I also put up a fight, but NOW kicking myself in my seal up ass for NOT having it removed sooner. I can only speak for myself, but it is hard for me to remember a time I have felt so well. There is an adjustment period, most of it being mental. Then you have to find the products / appliances that work best for you. I like not having to worry about the pain, the location of the rest rooms, and all the meds.

I wish you the best in your journey, but know you have some GREAT support here.

 

[acg101]

Before my surgery last week I searched for answers including Jpouch having Crohn's. I met with few GI's and surgeons and they ALL recommended not to do a J pouch.
Alltough a little over a week post surgery, I feel so much better already.

 

[semicolon306]

ACG101 - 6 weeks after surgery I am back to normal, well even better then I was prior to surgery. I am back at work full time as a paramedic and back on the gym 5 days a week. I am amazed on how well I doing. Orginally was alittle sore in the butt, all gone now. NO meds and living life. I would really try that ostomy armor when you get better - makes life so much better.

 

[ameslouise]

@Clarabell - I have had my pouch since 2003. Started having issues in 2008 and have been dealing with that ever since. Things are looking better since I have been on Humira for about 3 months now.

No fistulae thankfully!

@ACG and Semi- So glad you are both doing well after your surgeries! ACG - yes, a j-pouch is not recommended for Crohn's patients. I was originally DX with UC, and re-DX with CD a year ago. Trying to keep my pouch, but reading Semi's positive reports, surgery is looking better and better...

 

[semicolon306]

If you guys are interested I put up some pics of the MRI prior to them taken out the J pouch. It shows how the J pouch connected itself to my spine and the fistula going to the spinal cord.

They are in my profile. Some people might find them interesting, since most of us have not seen what we have.

 

[acg101]

@ Semi - You are a great inspiration. My surgery went well but dealing with post operative complications of a tear in my uthera (they are trying to figure out if it was a fistula or tore during surgery). In any event I will have a Foley in for 4 weeks hoping for self healing. I am so happy already about the surgery and not dealing with the copted nstant pain and bathroom runs. I walked last night 1.5 mile and although tired had no problems or worried where was the next bathroom.
Your MRI is facinating and I am so happy it was all resolved.

@Amy - I opted against the J pouch for several reasons - Not knowing for sure if I have UC or CD, where with CD there are >50% for complications, I can not tAKE THE CIPRO/FLAGYL combo because I was on it for 8 years and developed a toxicity.


I am making progress every day and today they removed my JP drain. I am trying new foods I could not have for the past 10+ years but taking it easy.

I am working from home via conf calls and everybody is supportive