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23 replies

Thinking about ostomy

FM Former Member
I can't take it anymore.

My four year anniversary of takedown was just a few days ago and I've had it. I have had pouchitis just about the whole time I've had the pouch. I was in the hospital last September and the inflammation was so bad they thought it was crohns even though all tests and biopsies show otherwise.

The antibiotics aren't doing much anymore. The steroids don't seem to help much. But I think my biggest problem is at night. Not only do I wake up a few times to use the bathroom every night, but i can't remember the last time I woke up without poop in my pants. I'm going through a few pairs of underwear nightly and I have to washy sheets often.
I'm a young single guy and I want to have a girlfriend, but who want to be with a guy that has uncontrollable bowel movements every night?

I have been thinking about disconnecting the pouch and just having an ileostomy. I think that would solve my problems, but I can't be sure. I haven't said anything to my doctor yet. I have an appointment in August. But even with all the problems I've been having this is still a hard decision. I've tried almost everything. I don't want to take antibiotics and steroids every day. They're not helping so I haven't been taking them. I tried a number of herbal things, probiotics, I even changed my diet to mostly plant based foods and I'm not eating a lot of processed foods.

What should I do? Should I just get the ostomy? I would really like some advice.
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M MaximausMember
Jared,
I am in the same boat. I have an appt with a surgeon on Wednesday to discuss pouch removal and perm. ileo. It is a scary and emotional decision. It tooks weeks before I could think about it without crying. Now I just want freedom from this pouch that has never worked correctly. My doctors have mentioned pouch removal through the years, but I was never willing to listen. It was not until my last appt. that I really started to consider it. I cried the whole way home! But I have suffered for 10 years! I can not suffer for the next 10 years!
My GI said that he has never had a patient go to a perm ileo and regret it! In fact he said that all of them said they wished they had done it sooner. Only you will know when you have had enough. When that times comes, do research, speak to those that have a perm ileo, and know that you will be ok. I would be happy to share with you what I learn along the way.
FM Former Member
Perm ileo isn't as bad as I first thought. I woke up from what was supposed to be the first part of my jpouch surgery and informed they were unable to connect the pouch and now had a perm ileo. Shock, fear? Sure. However, it hasn't been terrible outside of ostomy supplies. Those do cost. It gives you freedom and is a life change, but nothing like other life changing operations. I'm only 29yself and single too. I wish you both the best with whatever you decide.
C chiromancerMember
I am scheduled for disconnect and end ileo July 9th. Have had the pouch for about 20 months. Kicked this around with my surgeon and GI for a while, made the decision, emailed my surgeon and felt a relieved happiness, the end is in sight. I have had incontinence problems from day one. Being older I think makes this easier, vanity diminishes with age. I am also in a long term relationship. I can fully understand the reluctance to go to the bag but the J pouch has really restricted my activities (I did well on the loop ileo)so I am actually looking forward to having the bag, which is kind of weird.
SpookySpookyMember
If after discussing it with your surgeon, you both feel it will improve your quality of life, then you should go for it. I myself lived with a ostomy for almost 3 years. There was a time, early after my emergency subtotal colectomy, where it was thought the ostomy might be permanent. For the most part, I functioned well with the ostomy, and while it certainly wouldn't be my first choice to go back to it, I've often considered that if the pouch ever failed, it wouldn't be the end of the world to go back to the bag, having already lived with one for so long.

That said, if you do decide to go to the bag, will be much happier with an end ileo than a loop. I had both... hated the loop, but the end was very manageable.

Best of luck to you!
kathy smithkathy smithMember
Like Spooky, I also had an end and a loop ileo. The loop was naughty. The end was just fine. From what I've read here, pouch removal needs the expertise of an experienced surgeon and the recovery is a bit difficult. But those who've opted for pouch removal and a permanent ileostomy are very happy with their decision. It seems like 4 years is certainly enough time to see if your pouch is going to settle down. If you decide to give it more time, when is the deadline? That would be the fly in the ointment. It would be nice to have a crystal ball so you could determine whether or not to wait it out.

I think you know what you should do (isn't that cryptic?), but that doesn't keep you from second-guessing your decision.

I hope you find better health very soon.

kathy Big Grin
kathy smithkathy smithMember
That's the question. Some people have resorted to an end ileostomy without having the pouch removed (Cataja and JasonPa). Others tried that route and found that they had to have the pouch removed later because diversion alone didn't work (JillM). I think it's up to you. Of course you could try diversion to see if it solves your problems. If that doesn't solve the problem you could then opt for the pouch removal.

kathy Big Grin
SpookySpookyMember
jared, my understanding is that you don't have to have it removed. This would be something to discuss with your surgeon. Many people simply opt to have it disconnected rather than removed. But, from what I have read, those who just have their pouches disconnected sometimes continue to have similar problems despite the bypass, including ongoing pouchitis and inflammation. I believe there are several people on this board who have had a disconnect rather than a removal and have had varying results. Perhaps they would like to share their experiences with you.
SpookySpookyMember
Also, not to give you yet another option, but some people opt for temporary diversion, with the intention of hooking the pouch back up later on. There is a school of thought that "resting" the pouch for a time will give it a chance to heal, allowing for a reconnect later on.

However, in that case, you would most likely be stuck with a loop ileo rather than an end, and a loop is really not ideal for the long term.
L liz11Member
Jared-
I might suggest you go first for a diverting ileostomy. The jpouch is left intact, just simply disconnected. It is NOT a major surgery. This should almost immediately get you out of your problems. At least for me it did. You may have to deal with high output standard loop ileo problems, but they are really nothing compared to what you are saying is going on with your jpouch. A lot of people can stay this way indefinitely - a disconeected jpouch with diverting ilestomry.

However, for some of us, that didn't work. I first had my jpouch disconnected after it was determined it had major functional issues that could only be resolved through a pouch redo. Unfortunately I developed bad diversion colitis which could not get under control. So after about 1.5 years and a lot of soul searching I had my jpouch excised and a permanent end ileostomy created about 3 months ago. That particular surgery is MAJOR MAJOR MAJOR. So your body has to be as healthy as possible and you want the best experienced surgeon you can find.

But you may not require that surgery. You may just be able to carry on with a diverted jpouch. The other advantage of the diverted jpouch is that you can always change your mind and try the jpouch again.. if you so desire!
ghostthepastghostthepastMember
well ive had chronic j-pouch problems from the start.ive only had 2 good managable years with it.i always neede surgical maintenance,pain meds,and er visits because of my j-pouch.last year it failed and i had no feeling of my j-pouch below my belly button.i had a diverting permanent end ileostomy surgery and im feeling much better than i have with my j-pouch.i am able to function much better and eat more regular food now than with the j-pouch.i would tell you if you suffered alot,you lost years of your life to j-pouch issues,then have the surgery and get it over with.no point suffering and losing years of your life when you dont have to.
C chiromancerMember
Here is what my surgeon told me regarding my options. FYI I had UC and rectal cancer so your situation may be different 1. disconnect pouch, leave in place, create end ileo, 45 minute surgery he considers this temp situation and does not like to leave the pouch in place and disconnected, he said it will shrink and after a year or so will be of no use regarding a reconnect some very small chance of cancer. 2. Disconnect pouch (at rectal cuff) and remove pouch, create end ileo. up to 4 hours depends on amount of strictures and other factors. 3. Disconnect and remove pouch, remove anus and sew up backside, create end ileo. Not sure how long this takes because I definitely am not doing it. This is a very big surgery and recovery can sometimes be very difficult. I am doing number 1 or number 2 if when he is "in" he sees pouch removal is going to be relatively simple he will remove it, he said sometimes they basically just "fall" out.
vanessavyvanessavyMember
I am sorry but I find it ridiculous doctors do not mention continent ileostomies with these options you just mentioned, infuriates me more. I had options given to me that were all ostomy bags. If it wasn't for my FAP yahoo group I would have been stuck with one. Just always consider the BCIR and kpouch. A lot have success with them that switch, even with chronic pouchitis.
kathy smithkathy smithMember
The reason that continent pouches aren't mentioned more is that they were largely replaced by j-pouch surgery so not as many doctors perform that surgery. If a j-poucher has chronic pouchitis a continent ostomy is contraindicated. Even if one is doing 'okay' with pouchitis in their continent ostomy, I would think that opting for the chance of no pouchitis would be more desirable.

Ostomies aren't at all bad. I thought I'd hate it but it was perfectly fine and I was able to do and eat absolutely anything I wanted.

kathy Big Grin

kathy Big Grin
C chiromancerMember
I spoke with, my surgeon early on (before my first surgery about continent ileostomy/Kock/BCIR he does not do them. He wasn't aware of anyone in the Kaiser system at least in the bay area "still doing them". As was said by Kathy they have gone to the J pouch. It did seem like an interesting option, at the time I did not pursue it as I was a candidate, albeit not a very good one for the J pouch. At this point I have zero interest in a K pouch or BCIR, I want the simplest solution to getting stool out of my body. No big surgery, no messing with transforming parts of the body into doing things they were not designed to do. God bless you if your happy with your continent ileostomy, God bless your if your happy with your J pouch, from having a few good days over the last 18 months I definitely can see how that could be so. It was not to be for me, though I don't regret trying it I am done.
vanessavyvanessavyMember
It is just not correct information, sorry. There are people who switch to continents that have chronic pouchitis with J pouches and do fine. I just have to chime in because that is not always the case. Yes plenty of people are fine with ostomies but others also with ostomies go continent, that rather die than have one. I know plenty.

This is about spreading awareness for people that might not know what other options are out there, not what it the best surgery to have. Please stop making it out that way.

Also I please don't god bless me, I am not christian so that is offensive.
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