JPouch stricture, surgeon recommending illeostomy as ONLY solution

Hi all,  I haven't been here for a while. 

Well I have had my Jpouch for over 20 years and on the whole it has been pretty good.  I can say this even though my colon was removed due to a misdiagnosis of colitis.

Now, so they say, I have crohns and I was encouraged to start infliximab 2 years ago.  Since then my health has been far worse.  Starting infliximab was ok.  However, then I had to stop it due to getting shingles.  During the 3 months I was off this, I had 3 hospital admissions due to blockages/obstructions.  I have now been back on the infliximab for 6 weeks and already had one admission.  All of these obstructions have cleared on their own without anyone being any the wiser as to why they occurred.

 A surgeon who I have seen once before and who conducted a pouch exam says that I have a stricture at the 'start of the pouch'  and a few others further up and I need to accept I will have to have an ileostomy pretty soon.

As you can imagine, after having my colon wrongly removed, having a JPouch I never needed and being given infliximab which has made me worse, I am reluctant to accept this diagnosis.  Also I had a temporary ileostomy for 8 months once and it was the worst 8 months of my life.  I was filling every half and hour and leaking etc etc.  However, this surgeon thinks I would have a better quality of life living like that! 

So my question is...is this surgeon correct, why is my only option a major operation??  By the way, another medical doctor said my pouch may 'disintegrate' during an operation.  I find this hard to believe as it is enduring 10 bm's a day without any problems.  Help!!

 

 

 

 

 

 

 

 

 

 

Original Post

I'm so sorry the infliximab hasn't provided the benefit you hoped for, and that things have changed for the worse. The multiple strictures you describe can be very hard to treat, unfortunately. I can't tell if you're involved with a good gastroenterologist, but if not then that might help surface the best/largest set of non-surgical options. I hope you start having some better luck!

I have a really annoying reccurent stricture and have been getting dilated by my GI every 8 weeks. It's not ideal but I'm not prepared to have an ileostomy. I have a surgical consult in December to see if I have any other options. I feel like there has to be something better. I don't really have much advice since I haven't been to the surgeon yet but I'm in the same boat. 

Chantalword, my thoughts on the subject are to do everything you can to save your j pouch.  Strongly consider getting a second opinion from a doctor who is experienced in treating pouch problems.  I cannot blame you for not wanting an ileostomy.  That was not an option that I wanted when medical conditions made removal of my j pouch necessary.  Two options that do not require having an external bag are the K pouch and the BCIR.  There is a lot of information available about both procedures on the internet.

Mrsbrightside,

It sure sounds like you are in a quandary. I don’t know your whole story, but it seems like your condition has worsened in spite of Remicade, not because of it. It is not too uncommon for antibodies againt Remicade to form after stopping it for a period, then resuming it. That may explain your current issues.

That said, why not try Humira, Entyvio, or Cimzia before opting for pouch removal? I would think stricturoplasty or resection of just the strictures would make more sense than pouch removal.

How about second opinions from other gastroenterologists and/or surgeons?

Jan

Hi Guys,  thanks for all your replies. 

I will be asking about dilation next time I see the doctors. Jan Dollar, you are right about the remicade, I said this to the doctors on my last admission, that on the whole it has made me worse.  Although it may settle down now and Its possible I suppose that I will be okay for a while.

I have contacted St Marks hoping I can be referred there to a specialist in pouches.

It is reassuring to know that we are all keen to hang on to the pouch as long as possible and I am not the only one!

 

Oh sorry, I did not know you were with the NHS, so that definitely makes a difference in regard to options. I know that second opinions are possible, but wait times can be intolerable. Plus, once some doctor high up the rankings has made a determination, it is difficult to find someone to enter a differing opinion. That can happen in the US too. 

Also, there is the cost vs. benefit ratio. It is neither a bad or good thing, just part of the consideration. If biologics are not showing a benefit, they are less likely to invest limited funding to try other very expensive options. End ileostomy is a known factor and most people function quite well with one. If your past ileostomies were loop (diverting) ileostomies, they really do not compare in regard to day to day function.

The main thing though is being able to find someone who has the time to listen to your concerns, and explain fully what their assessment is. It is possible that end ileostomy is your best option, but it does not sound like you have been given all the information you need to accept it. You’d think it was not too much to ask to be part of the decision making process.

Jan

Again Jan, you are spot on.  Getting someone who has the time to listen and to talk you through all your options is very difficult.  When I see my consultant I am lucky to get 5 minutes of his time and I leave feeling that I wasted my time even going there!  

I think it was an end ileostomy I had, I haven't got a large bowel anymore so I assume it was that ??  I am not an expert on that side of things, I suppose I've never really wanted to know.

However, amazingly, I emailed St Marks at 2pm this afternoon and at 5pm the 'pouch nurse' rang me and discussed my case and then recommended I get my doctor to refer me as soon as possible and that I would be seen by the consultant there who specialises in pouches, cant remember the name now.   So I am happy about this very quick response.  Now I just need to get my doctors to hurry up and refer me, as they have all the time in the world, unlike me!

 

 

I had my j-pouch removed for many reasons with the strictures becoming the final thing I couldn't successfully battle. I have an end ileostomy and it is night and day better that the temp, loop, one was. I also feel better now that I am not in a constant battle with my sick j-pouch.

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