J Pouch - Should I Take the Risk?

In this discussion
Replies
3
Views
2086
Kiwigal

Diagnosed with ulcerative colitis in 2014, underwent steroid treatment with prednisone and used maintenance medication, Asacol. Managed UC until mid-2015 when flares became worse, went into Remicade infusions which became less effective, then had urgent surgery to remove my large colon in May 2016. I coped well with the resultant ileostomy, back at work full time 8 weeks out from surgery, pain and drug-free with a short hospital admission in early 2017 due to pain from a stomach ulcer. Had a J pouch formed in July 2017, have never fully recovered total health since then. I have had numerous hospital admissions with epigastric pain, nausea, and vomiting. Past admissions have diagnosed gastritis, but the most recent left me undiagnosed and in the hospital for over 2 months. I have lost over a quarter of my body weight and am dangerously malnourished, so much so that I have finally been hooked up to TPN via a PiC line to be IV-fed nutrition for a month. I'm now questioning whether I should go ahead with the final surgery or have the J pouch removed?

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,086 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Bill

Hello kiwigal. Thanks for sharing you troublesome journey, which makes me feel how fortunate I have been to avoid such a tumultous, painful and worrisome time. You are quite right to be questioning what should or should not be happening to you in terms of treament as it is you body and your life that is being entrusted to these people.  From a superficial, amateur, outside perspective, it does not feel as though the j pouch is necessarily the problem so, what I would be doing, is to insist on a complete, honest and open discussion with my surgeon about what is wrong, what my realistic options might  be and what would be the predicted outcomes for each of those options. Without all this information it would be very difficult to make a sensible and informed decision.  Having consulted with one consultant, I would be inclined to seek a second opinion just to be sure that there was nothing missed by the first 'expert'.

I hope this helps.

Best wishes

Bill 

Gray Logo for MeetAnOstoMate
Kiwigal

Thanks Bill, I really appreciate your response. I have had a good talk with my surgeon who I trust implicitly and when a good friend posed the question about that I realized that my surgeon has always been very open and honest and had my best interests at heart, she treats her patients as people not cases. So I have decided to go ahead with the reconstruction which will happen once I'm at a safe stable weight so hopefully in the next 2 weeks. Can I assume from your response that you have had a successful reconstruction? If so, would you be comfortable sharing your experience with me and some insights and tips on what to expect after the surgery?

Many thanks
Mandy

Bill

Hello Kiwigirl/Mandy. I am glad that you have a surgeon you can feel confident about. This makes it easier to make the desicions about whether to go ahead with surgery. I have not had reconstructive surgery as my own surgeon did not recommend anything other than a straightforward colostomy.

I have recently returned from a visit to my daughter in Dunedin, so am really jealous that you get to live in such a beautiful country all the time.

Best wishes

Bill 

All times are GMT - 5 Hours