After 14 years with my j-pouch I'm considering perm ostomy

Olive OilMember

I've had a good run of it and was really fine with my J-pouch, until the birth of my daughter 3.5 years ago. Since then, it has been a struggle. I began anti-map therapy, which put my Crohn's in remission and I adhered to the Paleo diet, which slowed things down to where I felt "normal."

But it seems I have a stricture and paleo slows things down to the point of giving me obstructions all the time. So now I eat foods that are gluten and dairy free and avoid anything that is raw or doesn't break down well. So I keep things looser and I don't have obstructions...I just have chronic diarrhea that feels like it's burning through my skin.

I am missing out on so many things with my family. We went to Disney World earlier this year and I had to sit out of most things because I hurt so badly I couldn't walk with them or stand in line. I miss out playing games with my family and going to the gym with my friends. I'm in so much pain right now it's completely debilitating.

I'm scared to have another surgery though. This would be number 13. And I had so much troubles with my skin when I had an ostomy. And this would be permanent. What if I'm just exchanging one set of problems for another? And with having another surgery I'll just end up with more scar tissue and I don't want more problems with obstructions.

I feel lost.

10/14/131:19 PM

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skn69Member

Olive,
I am so sorry...we didn't know...that sucks...you finally were able to have your daughter and you cannot enjoy life with her for the pain...
I am really lousy for giving advice on this sort of thing but I do believe that life should not be lived in pain...and missing out on life is even worse...you should be out there having fun with your family not sitting on the bench waiting for them to come back from it.
IF it is at all possible to live your life pain-free then I would go for it...
You should not be suffering...you baby is still young and you need all of your strength and energy to have fun with her...
Sharon

10/14/133:00 PM

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Jan DollarModerator, RN, retired

Shoot! That is really lousy, Olive! I think that must be the worst thing about Crohn's... The prospect of strictures-surgery-strictures cycle. I forget if you are on any maintenance medications for your Crohn's or are just diet controlled.

I know that they try to put off stricturoplasty or resection as long as possible specifically because of what you state, more surgery possibly triggering more adhesions and/or strictures. But, at some point, you just have to have it fixed. I suppose there is a tipping point where your life is completely controlled by this that you just have to have the surgery and hope for the best.

So, if you decide to get this fixed, are there plans to reassess your medical management to try to keep this from recurring?

Jan

10/14/135:14 PM

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Olive OilMember

I had lab work done today to check CRP numbers and will have stool testing done as well to check for c-diff. My doc wants to make sure of what's causing all of this before jumping into surgery.

He is also giving me some script for a packet of stuff you dissolve in water and take and it's supposed to slow things down and thicken them up. And he's putting me on an acid blocker to see if that helps because he suspects a lot of what I'm passing is bile.

We'll try this for two weeks and get all the results of the tests and see where we stand and if an ostomy is the way to go.

I currently am on anti-map therapy and take Mycobutin and Lamprene. With that my Crohn's has been in remission. The main problem is dealing with what the disease DID to me in leaving me without my colon. But for the last couple of years I've had no active inflammation.

As far as surgery for the stricture goes...they can't really see it on any small bowel tests. I get obstructions but I've been able to manage them at home and if I avoid a TON of different types of foods then I don't seem to get them. I just want to be able to not have burning pain when I go to the bathroom and to be able to slow things down.

So I guess we'll know more in a couple of weeks.

10/14/136:18 PM

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Jan DollarModerator, RN, retired

Sounds like your doc has a good action plan because it makes perfect sense to be sure of what is going on before resorting to surgery. Of course, you can only play the "what can I eat" game so long before you just have to give up. The problem is that ileostomy may not be a fix all, and with Crohn's, you want to preserve as much small bowel as possible. So, you don't want to scrap the pouch unless it is a last resort.

Once everything has been ruled out except stricture or adhesions, then surgery is all that is left. But, the real question will be whether it is adhesions or a true stricture. If it is "just" adhesions, then that is a little more hopeful because it would not indicate that you need more medical management. Hopefully, they can just clean things up and you are back to normal. But, if it is Crohn's related, with thickened bowel and associated inflammation, then reevaluation is needed. Sometimes they just don't know without physically going in and seeing it.

I would not want to risk camera pill endoscopy unless you were ready for surgery anyway, because it could get stuck. But, that might be the best small bowel imaging for you.

Jan

10/14/137:48 PM

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Olive OilMember

Jan, my doctor has mentioned several times that he wished he could have me swallow the camera pill but it's just too risky and would probably get stuck.

I'm definitely not rushing into surgery...especially since I'm only 33. I, hopefully, have many more years and I want to limit the number of surgeries and, as you said, preserve the amount of small intestines I have left.

So hopefully the acid blocker and this stuff to slow down and thicken things will help. I'm praying to that end anyway. We're STILL trying to adopt. It's been five years now but we're still trying. We had a match but just experienced a failed adoption but we're still in it. And I need my health if I'm going to have a newborn again.

Sorry I've been away for so long. It's good to "see" you again.

10/14/138:25 PM

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CTBarristerMember

Supposedly, the camera pill is getting made smaller and smaller. I remember when they first came out with this technology, one of the investors showed one to my father and he brought it home for me to look at. It looked like the biggest horse pill I had ever seen and I thought there was no way I could even swallow it, without choking and having to have the Heimlich maneuver performed on me.

Olive Oil, since you would seem to benefit so much from the procedure, I would ask exactly how big is the latest incarnation of the pill. I can fully appreciate that the stricture does make it a risk that it will get hung up.

10/14/139:12 PM

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kmjMember

Hi Olive, I just had my j pouch removed 7 weeks ago. I had mine almost 7 years and had dealt with pouchitis the whole time. I have a 7 year old son and was missing out on life with him and my husband all the time. It was a big reason I new it was time. He wasn't going to stay small forever and I didn't want to miss anymore. I had some skin issues also with my previous ostomy. I had a lot of trouble in the beginning now but there are so many appliances to try that I have figured out what works for me. I was very sad about it after, was feeling pain around my stoma, not just because of leaks but it just was sore around it pretty bad for the first month. I thought I would always be uncomfortable. I was crying and really depressed. I am so happy to say that I am doing fantastic now! I can honestly say that I forget about it now. It has been a total turn around, I am not sad about it anymore. I know I needed to do it and I know things will only get better as I get faster with changing my pouch and learn how to drink and when. I tend to have really watery output but I am working on it. Please know that you can have a wonderful life with an ostomy as many people have proven on this site. I am 37 years old. : )Best of luck on your journey let me know if you have any questions : )

Karen

10/15/135:58 PM

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HevMember

Hi Olive Oil

I hope you dont mind me joining your post, but I too have just been advised by my surgeon that it is time to remove my pouch. I had it formed in 1996 due to UC and was fine for a number of years but slowly developed a number of vaginal fistulas. I have tried various treatments but to no avail. Long story short I was given a temp loop illeostomy 2011 with a view to rest my pouch but this has not worked and the fistulas are just as bad if not worse.
I am looking for advise from others who have had their pouch removed and esspecially the rectum removed as have heard that this can be the worst part.

Any feedback would be gratefull.

11/6/136:03 PM

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liz11Member

hey hev. there are a lot of us on here who had the jpouch excised, remaining rectum and backside parts removed and now have permanant ileostomy. Me being one of them! Its a very very tough surgery. But I think you will be hard pressed to find anyone on this board that regrets doing it. In fact, most of us, regret that we didn't rip out the nasty jpouch sooner!

You might want to check out the ostomy section on here. I think you will find a lot more posts from ex-jpouchers turned permanant ileostomates in that section. In the interim, best suggestion I can make is to be sure you find an experienced surgeon to do this operation. And I mean a colorectal surgeon who has performed this extensive operation many many times in the past. Its a biggie. And you want experience and expertise on your side.

11/8/138:44 PM

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HevMember

Thank you Liz

In a small way am sorry to loose my pouch, did have a few good years, but am managing very well with my stoma and can do anything I could before so it is no great lost. When I had my pouch formed by my original surgeon he did say it was relitavley new and the longterm outcomes were not guaranteed so I did go into it with a view to sometime down the line maybe having to go back to my ileostomy.

My current surgeon is an excellent colerectal surgeon, in fact he has been Chief Resident surgeon at the Mayo clinic in the states for a while but has come back to the UK so feel more than happy for him to undertake the operation.

11/8/139:07 PM

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