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I currently have a j-pouch (25 years) and was diagnosed with Chrohns a few years ago. Met with a new Dr. (referred by my current Dr.) who will try some new meds, but said my best option is a permanent ileostomy. I had a temporary after my j-pouch surgery, but a permanent has me concerned. Does anyone have a permanent ileostomy and can shed some light that it’ll be ok ? I’m very active with friends and family and don’t want to miss out

Original Post

I dont have chrons but I also have a loop ileostomy which I'm keeping (and i have a jpouch which is giving me a bit of an attitude at the moment 😂). I kept having problems with Desmoid tumours causing monthly bowel obstructions and since having my ileostomy back I've had little to no bowel obstructions. My stoma has given me part of my life back and while having the stoma is seen as a negative by some, I look at it in a positive way.

If having a jpouch is causing you daily problems and is preventing you from doing things, or you've tried just about everything to help with your chrons and nothing is working, an ileostomy is a good last resort. There is Nothing wrong with having an ileostomy, but I appreciate everyone has different views on it.

 

It might be better to go with a permanent ileo and get it over imo, but then again the new meds might work- if you go with meds, at least you can say you tried everything. No choice is wrong, I think you should choose whatever is best for you. I personally would go with the ileo if you did not have any problems with the temp ileo. 

Since I had many blockages with a temp, I would try meds. If I did not have problems with a temp, I would choose ileo.

@Scott F posted:

Marc, although Crohn’s does sometimes cause pouch failure many of us do just fine with medication. You might benefit from a more optimistic doctor. That being said, people report much better experiences with permanent end-ileostomies than temporary loop ileostomies.

I would follow Scott’s advice; I’ve read many a post on this forum where members have been diagnosed with Crohn’s after many successful years with a j pouch; although I can’t recall reading post where members have had to live with a permanent ileostomy, having had their J pouch removed as a result of Crohn’s.

Also, within medical circles; I believe the jury’s out when it comes to a ”Crohn’s of the J pouch diagnosis” once the colon has been removed.


 Back in 2005, after being treated for UC since 1993; my Surgeon and his Pathologist, were adamant, I had actually been suffering from Crohn’s; and therefore not a candidate for J pouch surgery.

However, after 9½ years with an end ileostomy, taking no medication to treat or prevent a flare up (other than loperamide) and due to my persistence, I finally got myself a J pouch; since 2015. 

In 2005; my pathology results should have been sent to a specialist of J pouch surgery or at least referred to a Hospital specialising in such a procedure; but as my surgeon was old school and had such a reputation within the Hospital, I was lead to believe his word was final; I wasn’t even aware of St.Marks Hospital, London at the time.

My J pouch surgery was performed at St.Marks.

However, prior to the creation of my ileostomy (2005); I struggled for years, putting off the inevitable and even though I’d recovered from my last flare up, I was never 100% and once I was, another flare up would occur; the ileostomy gave me my life back.

I wouldn’t say living with a Ileostomy is a bad thing, it’s just preferable to not wanting the feelings and implications of a colostomy bag and, it’s surely the very last and no choice resort; although looking back, I should have accepted the ileostomy when it was offered in 1997.

Follow Scott’s advice; find a more optimistic Doctor.

Last edited by strange

"after being treated for UC since 1993; my Surgeon and his Pathologist, were adamant, I had actually been suffering from Crohn’s; and therefore not a candidate for J pouch surgery"

All my Dr's felt the same with me. 

Some cases are hard to diagnose either or. 

I suppose some are clear one way or another and I was told a j pouch would not work in my case. But I was also told it "may work". So I tried it. Nope. Didn't work. 

But I had to try. Probably would have regretted not trying. But now with my end ileo I know I tried and I'm good with the outcome. Not with the process that got me here but I'm good now. 

And yes I second following Scott's advice. 

R. 

@Mysticobra posted:

"after being treated for UC since 1993; my Surgeon and his Pathologist, were adamant, I had actually been suffering from Crohn’s; and therefore not a candidate for J pouch surgery"

All my Dr's felt the same with me. 

Some cases are hard to diagnose either or. 

I suppose some are clear one way or another and I was told a j pouch would not work in my case. But I was also told it "may work". So I tried it. Nope. Didn't work. 

But I had to try. Probably would have regretted not trying. But now with my end ileo I know I tried and I'm good with the outcome. Not with the process that got me here but I'm good now. 

And yes I second following Scott's advice. 

R. 

 I’m no expert in the diagnosis of Crohn’s but when a patient has never displayed any signs or symptoms of Crohn‘s elsewhere within the digestive tract, especially for a number of years and whilst being treated for UC, then Doctors should err on the side of caution before declaring it Crohn’s.

When issues and complications develop within the J pouch but not elsewhere, it it Crohn’s ?

 

During a consultation with my Surgeon at St.Marks, who was also the Clinical Director; I was asked why I’d left it so long before seeking a J pouch and when I explained my initial Crohn’s diagnosis; although said briefly, I’m sure he said we no longer think that way now.

At the time, as it was so long since the creation of my ileostomy and I was beginning  my J pouch journey; I didn’t give his comment much attention; hence my sketchy recollection now.

Last edited by strange
@Mysticobra posted:

"after being treated for UC since 1993; my Surgeon and his Pathologist, were adamant, I had actually been suffering from Crohn’s; and therefore not a candidate for J pouch surgery"

All my Dr's felt the same with me. 

Some cases are hard to diagnose either or. 

I suppose some are clear one way or another and I was told a j pouch would not work in my case. But I was also told it "may work". So I tried it. Nope. Didn't work. 

But I had to try. Probably would have regretted not trying. But now with my end ileo I know I tried and I'm good with the outcome. Not with the process that got me here but I'm good now. 

And yes I second following Scott's advice. 

R. 

Out of all the times you and I talked, I never knew you had Crohns! I am sorry to hear that but I am more than happy to hear that you are doing better

Out of all the times you and I talked, I never knew you had Crohns! I am sorry to hear that but I am more than happy to hear that you are doing better

Well, not quite.

In 1993, I was diagnosed with UC and treated for such, endured 3 flare ups & during the last in 2005 an ileostomy was created.

Whilst awaiting reconnection (the term J pouch was never mentioned) my Surgeon and Pathology Dept. came to the conclusion, I was in fact; suffering from Crohn’s.

Eventually, during 2012 and due to my persistence; my original Pathology report was re-examined and as I’d not suffered a flare up for 7 years; nor taking any medication other than the Loperamide; I was re-diagnosed as suffering from Indeterminate Colitis.

 As you’re aware, by the time of my takedown (Jan 2015), I’ve actually had an ileostomy; either,  end (9½) or loop for 10 years; and nearly 16 years later, I’ve still not had the Crohn’s flare up.


Thanks for your concern.

 

Last edited by strange
@strange posted:

Well, not quite.

In 1993, I was diagnosed with UC and treated for such, endured 3 flare ups & during the last in 2005 an ileostomy was created.

Whilst awaiting reconnection (the term J pouch was never mentioned) my Surgeon and Pathology Dept. came to the conclusion, I was in fact; suffering from Crohn’s.

Eventually, during 2012 and due to my persistence; my original Pathology report was re-examined and as I’d not suffered a flare up for 7 years; nor taking any medication other than the Loperamide; I was re-diagnosed as suffering from Indeterminate Colitis.

 As you’re aware, by the time of my takedown (Jan 2015), I’ve actually had an ileostomy; either,  end (9½) or loop for 10 years; and nearly 16 years later, I’ve still not had the Crohn’s flare up.


Thanks for your concern.

 

Of course, I am glad you are at peace! I am glad loperamide is still working for you too. Do you take it all throughout the day???

Of course, I am glad you are at peace! I am glad loperamide is still working for you too. Do you take it all throughout the day???

Throughout my time with the ileostomies, I would try to take one Loperamide at least 4 times per day and sometimes 2 just before bed or when I knew I would be out for longer than normal.

Since J pouch surgery, my Surgeon said he likes Patients to work out the dosage for themselves, based on output and consistency but not to take more than 6 per day.

Currently, I tend to forget to take the Loperamide as often as I should but I still try to take at least  4 per day; especially first thing in the morning and 1 just before bed. 

@strange posted:

Throughout my time with the ileostomies, I would try to take one Loperamide at least 4 times per day and sometimes 2 just before bed or when I knew I would be out for longer than normal.

Since J pouch surgery, my Surgeon said he likes Patients to work out the dosage for themselves, based on output and consistency but not to take more than 6 per day.

Currently, I tend to forget to take the Loperamide as often as I should but I still try to take at least  4 per day; especially first thing in the morning and 1 just before bed. 

Oh cool, I see you have things all figured out! 

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