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At what point do you give up on your j-pouch?

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Posted 9/5/2015 6:55 AM (GMT 0)
I know my title may sound pessimistic, but I'm trying to remain as positive as possible.

At what point do you give up on your j-pouch and go back to a permanent ileo?

I'm 13 months post-takedown and still having issues. My day to day life is inconsistent; I wake up and I'm not sure if I'll be able to comfortably leave the house, get work done, run errands, etc. My frequency varies a lot day to day. On good day, I'd say I go anywhere from 4-8 times. On a bad day, it's easily 10+, including a few trips at night. My nighttime accidents have slowed up lately, but I'm having painful spasms that hurt into my testicles. I've always had on and off skin issues on my bottom since the surgery. I usually use a combo of Aquaphor & Calmo, sometimes Lidocaine, sometimes a thicker ointment from Coloplast. The consistency of my stool varies quite a bit; some days it'll just be diarrhea, other days it's more formed and thick. I've tried to find consistencies in my diet, but I there doesn't seem to be much. I can eat perfectly fine and still feel bad and vice versa. Lately, I've felt very fatigued throughout the day. I'm sure part of that is waking up for the bathroom 1-3 times during the night. I've issues with straining (I had some mucous lining removed on July 7th, and I was dilated on August 5th).

Recently, I was on Cipro daily, but I found it may have been making my stomach feel bad. It was more of a precautionary measure as opposed to treating active pouchitis.

My surgeon is sending me to get a second opinion from someone who used to work in his office, someone he trusts, talks to weekly, and is his "go-to" guy when he has questions. I see him Tuesday morning, and I'm curious to see if he has any other options for me at this point.

I'm honestly not sure where to go from this point. Going to a permanent ileo is obviously a huge life decision, one that I'm having trouble processing from a mental standpoint. Clearly no one ever imagines their life going like this, but at the same time, I just want to be happy, healthy, and be able to consistently work and make plans, all of which aren't happening nearly as much as I'd like them to be.

Any advice from anyone would be greatly appreciated.

J
Posted 9/5/2015 9:52 AM (GMT 0)
I'm not sure I can offer much help, but wanted to join this thread due to similar issues. I also get testicular pain, and this is the first time I've seen a post from someone with the same problem. Does it feel as though the pain radiates up from your anus up into the back of your testes? This is the pain I get, and as you say, it starts as a spasm in my tail end. My theory is that with all the closely bunched nerve endings down there, the pressure causes "referred pain".
I also wanted to ask you, is this pain a new thing, or did it start after takedown, as mine did?
I have been diagnosed with Pouchitis, but don't believe for a second that it's causing the worst of my issues, which all started immediately after takedown.
Posted 9/5/2015 4:30 PM (GMT 0)
In regards to the origination of the pain - sometimes yes, sometimes it starts from my midsection. So it varies. I believe your theory may be correct. I had similar pain after my first surgery, but my doctor said it could be from lack of activity. As I started moving around more, the pain went away. This time, the pain does feel different and is more intense when it's occurring.

I had a bout of pouchitis last Thanksgiving (perfect timing, right?), about 3.5 months after my takedown. Not fun. I have had lots of good days throughout my time with the pouch, days where I think to myself that maybe I'm turning a corner, or that I could actually live like this. But it never seems to last more than ~5 days or so.
Posted 9/6/2015 10:13 AM (GMT 0)
To be honest, the only way I get a "good day" is to starve myself, even then it's not always guaranteed and I guess starvation isn't exactly good anyway.
Posted 9/6/2015 3:22 PM (GMT 0)
Yeah, I've gone that route as well, sadly. It's not a way to live, though. I just read through your other thread; it seems we have some similar complaints, some different complaints. At least I know I'm not making things up. It's frustrating at times because I know people have had success with these pouches. I was dealt a bad enough hand with the pancolitis before this. Can we just catch a break?

Also, props to you for continuing to work full time through this. I've only been able to do part time work when possible.
Posted 9/6/2015 8:50 PM (GMT 0)
Yeah, full time work hasn't been easy, I can tell you that much. DO you find the Questran of any help? I want to ask my surgeon about trying this, at least if I ever get to see him again that is!
Posted 9/8/2015 8:44 PM (GMT 0)
Re: Questran, it's tough to say. I think it helps overall, but if I'm having skin issues, it won't help much, and I'll have to rely more on ointments (which I use after each BM anyway). You also have to watch when you take Questran because it affects how well your body absorbs other medicines.

I saw a new doctor today (the one my surgeon recommended I get a 2nd opinion from). Super nice guy, I've been so fortunate so far to have great doctors working with me. He suggested trying an OTC steroid cream for my skin issues, and if that doesn't work, an oral steroid like Entocort. As far as frequency, he wants me to give a fiber supplement another shot and see if that helps me out. He told me a few days should be enough time to see how my body reacts. I also had blood work done so he can do his best to rule out Crohn's causing my issues (fingers crossed!).

He mentioned that I'm still relatively fresh for this type of surgery overall (13 months out!), and that he'd like to work with me for 6-7 months before completely giving up and having me go back to the ileostomy. I trust his opinion as much as I trust my surgeon's opinion, so I'm willing to give it some time and see if we can get this thing under control so I can live a "normal" life and get my livelihood back.
Posted 9/8/2015 9:28 PM (GMT 0)
Well, I'm only nine months out and made a decision today. When I see my surgeon, I will ask to go on the waiting list for a return to Ileostomy, but continue trying to get this pouch in a liveable state. If it's liveable before surgery, I'll come off the list. If I'm called up for surgery, and still in this state, I'll return to ostomy and forget this nightmare. I'm 44 years old and I want my life back, not playing a waiting game.
Posted 9/9/2015 9:22 AM (GMT 0)
So many of you have stuck it out, I'm amazed. I lasted three months before I was crying out to have the bag again.
Posted 9/9/2015 11:12 AM (GMT 0)
Sammy79, are you happy you went back to ostomy so soon? I've been thinking about it for about seven months now. Not sure how much longer I can take this.
Posted 9/9/2015 4:00 PM (GMT 0)
Silent: Oh gods, yes. My entire mindset changed towards it once I realized what a crapshow (literally) dealing with being connected was. After that, emptying a bag every now and again is a cakewalk. My appetite is voracious now that I'm no longer afraid to eat. I say if you can go back, then go back, especially if you're miserable. It's nothing to be ashamed of. I think the biggest problem I had with my other ostomy was I hated how 'abnormal' I felt with a bag. Now I've come to terms that having one IS my normal and that's okay. I'm way healthier now.
Posted 9/9/2015 9:28 PM (GMT 0)
Sammy, I was never unhappy with an ostomy. The only thing is it would be psychologically different returning. Before, I knew I could try this if I wanted. If I go back, that's it, no more options, it's a bag for life. That being said, I certainly can't spend the rest of my life in the state I've been in since November last year. Obviously I got this done in the hope it would work out, but good sense is telling me to accept it's not always what we want, but what we need, that is best for us.
Another thing I've been thinking about, is even with a healthy pouch, going to the toilet is so arduous. There's so much cleaning involved now! Emptying an ostomy bag is a much cleaner job to do, and no butt wiping ,drying , cream applying, only to still have a sore A Hole! I keep reading pro pouch posts, where people complain that an ostomy is time consuming and hard to manage. I found changing a bag every third day much easier than this butt/toilet cleaning ritual umpteen times a day!
Posted 9/10/2015 4:58 AM (GMT 0)
I feel the same way in regards to the amount of upkeep I'm needing to do with each bathroom trip. I was in and out much quicker with the ostomy bag. I hope things work out for you, and you're able to find some relief soon, either by getting healthier or going back to the permanent ileo.

Sammy, thanks for chiming in. It's good to see someone else had enough issues and was happy going back to the ileo. I have similar concerns. It's a permanent decision for the most part. It's not as aesthetically appealing as not having a bag. But if it'll make me feel better, I'll go that route if I have to. I'm unsure if I'll be able to withstand another 6-7 months with the way I've felt the past few days, but we'll see what sort of progress is made and just go from there.

But you are exactly right, the ostomy bag is nothing to be ashamed of. You just have to own it and be proud!
Posted 9/10/2015 9:18 AM (GMT 0)
JA1234, did you get your second opinion and a new treatment plan? I'm curious to know what they think the problem is, whether it's Pouchitis or something else?
Posted 9/10/2015 1:40 PM (GMT 0)
Towards the end of my time with my loop, I was having a lot of problems with leaks and smells and it was that that really made me cry enough. The stoma was also very close to my skin so that probably had a lot to to do with it.

I also had a lot of complications that made being connected twice as miserable; going permanent was really the only choice I had in the end. I don't regret it at all. Changing a bag is so much easier. I love being able to say 'Be right back', running to the bathroom, evac'ing (as I call emptying the bag), do a quick cleanup, and go back to what I was doing. What took me an hour a month ago now takes me a few minutes. So, if you'll pardon my language, **** what's aesthetically-pleasing. LIVING is my aesthetic!
Posted 9/10/2015 9:08 PM (GMT 0)
To be honest, I've never understood the "aesthetically pleasing" thing, who else actually sees our ostomy, we wear clothes don't we? I guess the exception is a spouse or partner, but that then comes down to "if they can't accept us for what we are", doesn't it?
Posted 9/10/2015 9:53 PM (GMT 0)
Hope I'm not butting in, but I'm starting to wish I'd been more content with having an ostomy. There were drawbacks (I never found emptying the bag that particularly quick and convenient - especially in a crappy public toilet - unless the output was like water), but on the whole I was functioning better than I am now. I'm not at the point of desiring a return to the ileostomy - can't face another surgery right now, among other things - but I can see how people like SL reach that state of mind.

I'll see where I am in six months.
Posted 9/10/2015 10:12 PM (GMT 0)

Silent Lucidity said...
JA1234, did you get your second opinion and a new treatment plan? I'm curious to know what they think the problem is, whether it's Pouchitis or something else?

JA1234 said...
Re: Questran, it's tough to say. I think it helps overall, but if I'm having skin issues, it won't help much, and I'll have to rely more on ointments (which I use after each BM anyway). You also have to watch when you take Questran because it affects how well your body absorbs other medicines.

I saw a new doctor today (the one my surgeon recommended I get a 2nd opinion from). Super nice guy, I've been so fortunate so far to have great doctors working with me. He suggested trying an OTC steroid cream for my skin issues, and if that doesn't work, an oral steroid like Entocort. As far as frequency, he wants me to give a fiber supplement another shot and see if that helps me out. He told me a few days should be enough time to see how my body reacts. I also had blood work done so he can do his best to rule out Crohn's causing my issues (fingers crossed!).

He mentioned that I'm still relatively fresh for this type of surgery overall (13 months out!), and that he'd like to work with me for 6-7 months before completely giving up and having me go back to the ileostomy. I trust his opinion as much as I trust my surgeon's opinion, so I'm willing to give it some time and see if we can get this thing under control so I can live a "normal" life and get my livelihood back.

NiceCupOfTea said...
Hope I'm not butting in, but I'm starting to wish I'd been more content with having an ostomy. There were drawbacks (I never found emptying the bag that particularly quick and convenient - especially in a crappy public toilet - unless the output was like water), but on the whole I was functioning better than I am now. I'm not at the point of desiring a return to the ileostomy - can't face another surgery right now, among other things - but I can see how people like SL reach that state of mind.

I'll see where I am in six months.

Not butting in at all. I'm hoping to get as many opinions as possible. I got used to the whole public toilet thing for the most part, though I always tried to find the cleanest, most convenient places to empty and just plan ahead (not always easy, of course).

In regards to being aesthetically pleasing, it has nothing to do with my partner, but with other aspects (going to the beach, wearing tighter/dry-fit clothes when working out) and having my bag being filled with gas, etc. or just sticking out some. Towards the end of my time with the bag, I started to not really care as much. I'm skinny, most of my shirts fit slim, and it gets quite hot and humid here near the coast, so I just learned to not care as much. If anyone asked (which no one did), I would happily explain the situation.

So while I did mention aesthetics, it used to be a much bigger deal for me than it is now.
Posted 9/10/2015 10:29 PM (GMT 0)
I must admit that the bag being filled with gas did used to bug me. However, the discomfort gas causes with a j-pouch is far worse, I miss the ostomy venting it for me and the resulting happy insides. Man, the more I type, the more I know what I need to do.
Posted 9/10/2015 10:45 PM (GMT 0)
It sounds like it man. I know you'll make the decisions that's best for you and your family.

I did speak with my original doc yesterday. Doc #2 wants to also biopsy my skin to make sure nothing abnormal is going on there since I've been having so many issues lately.

Doc #1 also thinks I could have pelvic floor dysfunction (https://my.clevelandclinic.org/health/diseases_conditions/hic_pelvic_floor_dysfunction). The symptoms listed match a lot of the discomfort I've had lately. I'm supposed to set up an appointment with a therapist soon. Maybe I'll find some answers there.
Posted 9/15/2015 4:35 PM (GMT 0)
I lasted 18 months. Could I have lived the rest of my life with the J pouch? Yes, but it would have been a pouch centered life and a restricted one. I found myself always considering the consequences of an activity and not doing things because of J pouch problems. That sort of considering now that I have the end ileo has ended. My biggest problem was leakage with butt burn a bad combo, there really was no solution except making the output thick which helped but was not a real answer. I used Tincture of Opium as a drug that proivided some help.

The issues around an end ileo have been minor and basically are just the routine. You have a bag, it needs to be changed, for me that is every 3 or 4 days. I shower, shave the area around the stoma put on my Eakins seal my "wafer" and brava strips then done for the next 3 or 4 days. Leaks are rare and only happen for me if I sleep too solidly and gas blows the seal. The filters dont work well or really at all with an ileo. that is my one complaint. I can empty and be out of a bathroom as fast or faster than taking a pee which is what I am sure most people think I am doing when I empty. I do physical work with no issues. My partner doesnt care. It isnt a colon but it does the job
Posted 9/16/2015 8:54 PM (GMT 0)

rdm said...
I lasted 18 months. Could I have lived the rest of my life with the J pouch? Yes, but it would have been a pouch centered life and a restricted one. I found myself always considering the consequences of an activity and not doing things because of J pouch problems. That sort of considering now that I have the end ileo has ended. My biggest problem was leakage with butt burn a bad combo, there really was no solution except making the output thick which helped but was not a real answer. I used Tincture of Opium as a drug that proivided some help.

The issues around an end ileo have been minor and basically are just the routine. You have a bag, it needs to be changed, for me that is every 3 or 4 days. I shower, shave the area around the stoma put on my Eakins seal my "wafer" and brava strips then done for the next 3 or 4 days. Leaks are rare and only happen for me if I sleep too solidly and gas blows the seal. The filters dont work well or really at all with an ileo. that is my one complaint. I can empty and be out of a bathroom as fast or faster than taking a pee which is what I am sure most people think I am doing when I empty. I do physical work with no issues. My partner doesnt care. It isnt a colon but it does the job

This is a good post, thanks. Butt burn/irritation/pain has been one of my biggest complaints from the beginning. My skin heals and then breaks down again constantly.

I have the same complaint regarding the filters with the bags; they never worked for me.

If things go decent, I'll also be right around the 18 month mark when we make a decision about what to do moving forward.

My new doctor called yesterday with my blood work results. My inflammation markers are fine, but I'm highly anemic. I started an iron supplement yesterday after hearing this. He also said the test didn't definitively point to UC or CD, but he's considering doing a pill cam procedure to see if there is an ulceration in my small intestine since I am anemic. Hoping for the best.
Posted 9/17/2015 11:40 AM (GMT 0)
JA1234,
In regard to your anemia finding:
I have had my j pouch for 5 years now and it functions well....no issues. However, I am chronically anemic. I started seeing a hematologist about two years ago and we have come to the conclusion I just don't absorb iron. Oral iron does nothing for me. He started me on iron infusions and they have helped tremendously. I go for blood work every four months to monitor my ferritin levels and make sure they don't dip too low.

Hopefully the oral iron does the trick for you but I just thought I would share. I have come to find out that many j pouchers have trouble with their iron stores whether they have a good functioning j pouch or not. If you are still have trouble after a while with the oral iron, I recommend seeing a hematologist.
Posted 9/17/2015 8:49 PM (GMT 0)

ByeByeUC said...
JA1234,
In regard to your anemia finding:
I have had my j pouch for 5 years now and it functions well....no issues. However, I am chronically anemic. I started seeing a hematologist about two years ago and we have come to the conclusion I just don't absorb iron. Oral iron does nothing for me. He started me on iron infusions and they have helped tremendously. I go for blood work every four months to monitor my ferritin levels and make sure they don't dip too low.

Hopefully the oral iron does the trick for you but I just thought I would share. I have come to find out that many j pouchers have trouble with their iron stores whether they have a good functioning j pouch or not. If you are still have trouble after a while with the oral iron, I recommend seeing a hematologist.

Great info, I really appreciate that insight. My doc said I should know after a week or so if it's working, but I'm assuming the easiest way will be for me to get another round of blood work done. I'll mention that to him if things don't clear up.

Were your iron issues causing a lot of unexplained fatigue? Did it clear up after you started receiving infusions? I know my sleep could be better, but I do get up sometimes to make a bathroom trip. Just always assumed that was why I hit a wall in the middle of the day and never seem to recover until I get to bed.
Posted 9/17/2015 11:53 PM (GMT 0)
JA,
Yes, the low iron was causing me a lot of fatigue. I was also getting short of breath going up stairs....little things like that. And yes, I got my stamina back after the infusions. Right now I'm feeling that run down feeling so I know I need to call my hematologist's office for an apt. and get checked out. It's just something I know I have to deal with and as long as the infusions help its all good. Hope those iron supplements help you!
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