Ileostomy vs. Pouch: Seeking Advice on Surgery Decision

Hi; I've had UC for over ten years now and have opted to have a total colectomy as the symptoms are worsening. I've grown accustomed to the idea of an ileostomy; my mum has had one for about fifteen years, so I'm familiar with the pros and cons. However, the surgeons are pushing me toward a pouch.

I'm not so keen; I've seen a lot about incontinence with pouches, and the surgery seems more complicated with more potential for going wrong.

Looking for any advice if anyone has had to make the same decision.

Thanks;

Will.

I was given the same option; I went for the ileo because I'd been suffering with UC, getting up 3 to 4 times a night to use the toilet and not sleeping well.

The J pouch offers you a somewhat normal function, but without the large intestine, it will always be quite loose, so you'll still have frequent trips to the toilet with not a great deal of warning.

My surgeon told me that only 25% of people who opt for the pouch find it successful; the other 75% end up having a second operation and having the ileo anyway.

The ileo takes a lot of looking after, maintaining hydration without further loosening the output, keeping the skin around the stoma healthy, and dealing with the odd leak (you can minimize the risk, but it will happen at some point).

Have they said they can't do a colostomy and see if that helps settle the UC down? I know how bad UC is, and really, a total colectomy was the only option I had. I opted for the ileo as I just wanted a normal life without being tired and losing weight constantly. I think I wouldn't be here now if I hadn't had the surgery.

Also, I have to be careful about hernias with a stoma.

Is surgery the only option you have? Have they tried medical treatments to clear the flare-up?

Thank you for that; it pretty much sums up the way I'm thinking.

I was on Infliximab for several years and recently swapped to Amgevita; both kind of work, but I never feel fully well and still have frequent loo breaks and flare once or twice a year.

I've also got a very strong history of bowel cancer on both sides of my family, so the op is also a preventative measure as well.

I just want to be able to get back some semblance of normality, so I think the ileo is the best route for me.

Will, I am a failed j-poucher. I have held back my real feelings and experiences on this forum in the past because I haven't wanted to scare people, but I've begun to think that honesty is best as you will be making your own decision based on the information you get on here. Whew, long sentence, I know... I was strongly encouraged by my surgeon to go for the j-pouch. Everything in three surgeries, three months between each two. I was on an online support group called j-pouch.org and, from what I was reading, life with a j-pouch is not so simple. My having been in agreement with my surgeon at the beginning began to change after my total colectomy (I had ulcerative colitis). When I mentioned my hesitation to him and my wanting to stop after surgery number one, he said, "You only see people who are unhappy on that support group. The others are busy living their lives. You're too young to live the rest of your life with a bag." I listened to it all and, regardless of how I really felt, went ahead with the next two surgeries. Always listen to your gut - I had five crummy years with my j-pouch and asked him to remove it and give me a permanent ileostomy - surgery #4. I recently received a questionnaire from that hospital with questions like, "Did you feel your surgeon listened to your concerns?" "Do you regret your j-pouch?" etc., so I'm thinking that I am not the only one regretting that decision. My UC continued to attack what colon I had left, which was a rectal stump, enough to attach my j-pouch to. I also had continuous inflammation of the j-pouch called pouchitis. Lots of meds all over again to control all of that. I spent a good amount of time emptying on the toilet, something I had happily given up with my bag, and I was embarrassingly loud in public. The process towards a j-pouch involves more surgery, more scar tissue, and more time away from work. I know my tale is not very positive. I encourage you to listen to feedback of all kinds, good and bad, regarding this and listen to your intuition when you ultimately decide what to do. I took a deep breath when I made my decision to go for a permanent ostomy. If you make a deep, satisfying sigh with yours and you feel settled, you'll know it's the right one.

They tried eflixymab with me too; it failed and didn't even have a slight effect, even after two doses in 5 days…

The doctors were as shocked as I was that it made no effect at all. They listened to me because I was so calm about it all; they knew I'd thought it through. My medical doctor, not the surgeon, wanted me to try other medical treatments first, but I knew somehow that I either had the surgery or my body was going to give up.

My decision to have the ileo I truly believe saved my life, but I think that was down to my situation. I'd gone down to just less than 8 stone from about 13 in about 3 1/2 months. I was struggling to stay awake and could hardly walk because of the energy required to move.

I won't tell you that an ileo is the way forward and it's the only right option; you have to really feel it within yourself and don't second-guess yourself.

If you feel the ileo is right for you, then tell the surgeon in no uncertain terms that's what you want. If you want to try the j pouch and are prepared should it not work or it's too difficult, then you can get the ileo. But for me, the stats about how many j pouches end up with ileo anyway just solidified my stance.

Wish you the best of luck whichever way you choose, but remember it is your choice.

My Ostomy Journey: Ryan | Hollister

To be honest, you can have problems with either one; you just have to go with what you think is right. I don't recommend choosing the way I did. I was 19, 36 years ago, and had the same choice as you. I had no idea which one to choose. A few things happened, and I ended up flipping a coin one week before surgery to pick one. Ileostomy won; no regrets, it was right for me, but it was the wrong way to choose.

G-Day WillIOM,

I am basically a copy of eefyjig. I went for the J-Pouch first but ended up with 18 years of big problems. Always looking for a toilet, having accidents at night when you have no control. And I got a pain when I need to go, which I related to how a lady gets contractions at birth. 18 years later, I told my surgeon to remove the J-Pouch and fit me with an ileostomy. I should have done that 18 years ago; I now have had my ileo and Ken butt for nearly 4 years, and life is fantastic.

If you go for the ileostomy, go for the complete thing and get your butt stitched up as well.

Good luck.

Regards, IGGIE

Hmm. IBD is complicated. If the colon is diseased, get rid of it. You might actually be cured, but that is the 64-dollar question. Will it cure you from UC or CD?

You only had UC for ten years.

At 40 years later, the colon had to come out (for me). The biologics you speak of take up to 6 to 8 weeks to show any improvement. Then again, each person is very different.

Dunno what makes people think you would get instant relief after two treatments on any biologic.

The doctors should know this.

Visible improvement in terms of camera test, yes, take your two months. You can get signs of improvement in terms of blood markers after about 7 days after one dose. I had two doses in 5 days and then a blood marker test a further 6 days after that. The docs should expect to see a positive change in blood markers, even by a minute percentage, but in fact, mine didn't change and some markers got worse, hence what solidified my position to have the colon out. I was living in hell and just wanted the pain, weight loss, and sleepless nights gone.

Good Afternoon Will,

I am not familiar with the Health Care Service on the Isle of Man and whether you are accessing private medical care, or whether you are, in fact, under the NHS system and a medical team HCA here on the mainland.

An outrunner choice - but have you considered BCID?

So long as you have no history of CD, this may be worth considering - giving the option to be bag-free - you would still have the safety valve of a self-controlled aspiration outlet - if the personal consideration for you involves a preference for being without a permanent collecting bag - this may be worth researching.

You have time to research - and a decision made in haste for the wrong reasons is one that you then have to live with over time.

Those patients who have had problems with the internal jpouches are clearly worth exchanging your detailed questions with ...... for there is no substitute for personal unbiased experience.

Arguably, those patients who are living over longer periods with a successfully functioning JPouch are not necessarily on forums such as these. Perhaps it is worth asking your surgeon who is promoting the jpouch - whether you may meet and exchange with a couple of successes - particularly those who had similar diagnostic paths to your own - before dismissal, hey?

If your surgeon has extensive experience with JPouch Surgery, they will also have an extensive patient base for whom they have operated: Do not be recessive in insisting upon the data - AND VERIFY IT!

However, we are all different - and as has been said - this is a very personal decision ....... your own history, [including your family history as genetics are involved - particularly your grandparents - the skipping generation data thing] IS worthy of understanding .... but, at the end of the day, whatever route/recipe - it has to be right for you

From my perspective, when one finds an experienced surgeon/s who is/are open without ego - [remember this is a big OP and there is a team involved] then you will feel well informed, comfortable with your decision, and ultimately have confidence in your team and be in a good place to proceed.

Have you ever researched BCID - given that your current surgeon seems to be heavily promoting one route - and there may be good reason for this, or it may be his/her own specialty, and you may be considered a good candidate for the JPouch.

I mention BCID - as clearly a non-standard Brooks ileostomy is under consideration - perhaps, if not already researched, you may find BCID or one of its specific modifications may be of interest?

Just a thought. At the moment, time may be on your side to consider all possibilities - one does not have this opportunity again once the ileostomy has been set, as there is only one option going forward.

Oh yes, and believe me, I DO understand that you may feel you just want to progress and 'get back to a point of stability - and it is tempting to revert to a familiar option - namely the straight brooks stoma as you have witnessed this solution with your Mother..... for at the end of the day, one just wishes to get back some semblance of normality - I can fully equate with this as life is full of possibilities and promise - and far too short to be sidelined down cul-de-sac routes that ultimately are not a good outcome.

With great respect, you are wise to be asking for patient feedback - as there is always room for a second opinion before committing to a route of no return.

Best wishes for whatever you decide.

And GOOD LUCK

~ ~ ~ ~ ~ Jayne ~ ~ ~ ~ ~