In comparison to the Step 1 and 2 surgeries, how much more difficult/painful is the surgery for pouch removal and permanent ileo? I had my second loop done last August because of unidentifyable pain in the pouch area. I still had the pain with the loop but it was bearable because there was no pressure from stool in the pouch which made it so much worse.

I've now been dealing with extreme pouch pain for the last couple of weeks and I hate it. I already could not ever see having the pouch reconnected since the pain was still there, but now that the pain is worse, I'm considering having it out altogether. I don't know if it's pouchitis or what but I've started on Flagyl to find out and asked for a Rx for Canasa to throw everything at it. This is the second round of Flagyl in a month to try to make it go away, last time it just came back. I can't take this. The whole point of the diversion was to make me feel better and, when I wasn't having as much pain, I was doing great. Now I'm back to feeling tired and irritable and not getting anything done. I'm also terrified that I could have the pouch out and somehow still have pain, like it's nerve damage or something. I'm still convinced that there's some kind of infection or something surrounding the pouch but when they checked during my last surgery, the said it was all fine.

I'm tired of being in pain and can't see ever being reconnected, but I'm scared of making things permanent. There's always that "what if" thought about some miracle cure but after 3 years I know it's not there. How much harder was the pouch removal surgery? A lot more painful? Is the healing Barbie butt hard to deal with? Also, my loop has a lot of output sometimes and I'm excited about possibly sleeping through the night with an end ileo because transit will be slower. Also about the "bulge" not showing as often when I'm dressed nicely at a business meeting and can't get to the bathroom. Is it really that much slower? I've only ever had a loop.

Sorry for the book and all of the questions!

Thank you!
Erin

I had my step two of three in november and since then I've had an abscess and was bleeding quite a bit but canasa took care of that. However I'm still having alot of pain. Its reassuring knowing someone else had the same problem but discouraging knowing your still having problems. Did your surgeon do a mucosectomy? I know mine didn't so I hope its just inflammation as I've never had UC in remission, even after my colectomy my rectal was in a constant flair till step two.

As for the Illeostomy I had a end for 4 months before my step two and don't know if I've really noticed a difference. However when I went to a loop i changed to a larger bag(500ml). I only where the small ones (430ml) I used to when I am going out. You will probably be able to sleep through the night with out getting up much but I don't know if the change will be that drastic.

I'm sure someone else with more experience in both subjects will chime in. Reading back I realize I really wasn't much help at all. Sorry bout that but sending good wishes and vibes your way!

Keith

HI Erin,

Tough choices you're facing with uncertainty about the source of the pain. I tried with a great deal of commitment to stay with my J (I'd also had another failed continent ostomy before my J), but finally had it removed last July. I've had other problems since then, primarily with adrenal function, but they are unrelated to the gut problems. My last surgery was no more difficult than the others - perhaps less so, although the surgery was 7 hours long because so much time was devoted to adhesion removal - they had been the source of my J failure. Because the surgery was so long, I had a lot of anaesthesia, and those side effects took at least a week to abate, but three days after the surgery I was walking more than a mile around the hospital corridors. I'm a very determined person, and had some pain killers, but still, it wasn't bad at all.

I have thin, high volume output with this end, as I did with my loop before. I can easily keep it thickened with diet and fiber, good ol Benefiber, as well lomotil which slows the gut a bit. If your waste is thick, because it's slower, you have more time to deal with emptying before you get to "bulge," so obviously, it's easier to just keep things thick. I have revamped the clothing styles I wear as my ileo is high, I'm thin, and I don't want clothing that rides at the waist or is cut too close to the body at the front. There are lots of styles for women that flatter the figure and offer a little disguise. When you find what's comfortable for you, you won't continue to think about a bit of a bulge.

As far as sleeping through the night, I eat before 6:30 p.m., don't snack in the evening, keep things thick, take lomotil before bed, and I can almost always sleep through. For a while I was so concerned about leaks (with reason), that I spent a lot of fitful sleep time checking the bag. That concern is beginning to diminish as long as I'm attentive to the schedule. If I eat late or too much, or too much gas-producing food, or forget fiber or lomotil, then I'm up once, usually about 3 a.m., certainly far easier than what I dealt with during the incontinent J period.

I was surprised that the Barbie butt was not significant at all. Some phantom feelings of an urge to poop normally, but of short duration, and the incision healed very quickly. I was shocked that I had stitches on the outside - somehow I hadn't gotten that before surgery! I guess it comes from a textile background where what I envisioned (without ever really thinking about it) was that the butt seam would be done internally, and be smooth and clean on the outside. the surgeon would be able to do that since she was working with another big belly incision - just get right down there and stitch it up from the inside! What a laugh now! Obviously I never thought it through! So, of course, it was quite a surprise when I awoke not only to an abdominal incision but to a butt seam that looked like a butcher had taken a dull bread knife to a loaf of French bread! Of course the surgeon objected when I used that description! Thought it was a pretty good job, and as it turned out, that was correct.

Best wishes to you - and please keep coming here for support. There is a wealth of experience and empathy here to draw on.

Barbara

Anyone else have any input? Is the recovery time as bad or worse than step 1 (colon removal and j-pouch creation)? I'm currently having upper abdominal pain that may or may not be pancreatitis and may or may not be causeed by the Flagyl I started last week (around the same time as the pain). I've never had problems with Flagyl before but now they want to stop it and the pouchitis pain will likely come back full blast because I was only on it for about 7 days and it was never fully gone.

If it is the Flagyl then I will likely elect to have the pouch out since I don't want to have pouchitis pain with no cure on a pouch that's not even connected!

What would I tell my work as far as recovery time? Are there major risks, more so than the other surgeries? Should I be worried? Will I be in a lot more pain?

Thanks!
Erin

Hi Erin,

I'm probably not the best example because I seem to get complications after every surgery. However, I think that pain wise the operation to remove my j-pouch was on a par with the one to create it. I don't remember my anal wound taking any longer than my other wounds to heal and although it was uncomfortable to sit while I still had my stitches in it felt much better once they were out. I got one of those memory foam cushions to sit on which really heped with the pressure pain.

As far as recovery time I would plan on being off work for around the same time you were off for your j-pouch surgery.

To be honest, I opted to have he whole thing out because wanted to be rid of all the "butt" issues that went with it. I knew that just getting it diverted wan't going to be the answer for me. I already knew that I could get pouchitis with the pouch disconnected because I suffered from it even before my takedown when I had my original operations. Knowing that I might still ahve problems with fissures and abscesses really made my mind up for me.

All I can say is that having the j-pouch removed was the best decision I have ever made.

I hope they sort out your upper abdominal pain soon.

Take care.

Shell

Hi Erin, my husband had his pouch out in Nov at CC. He had severe butt pain for 6 years with his pouch. He had an abcess for the last 6 years that no one found. He recovered really well. He had some issues with needing blood after surgery and he ended up with the G Tube, for a few days, but overall, he did really well. He was in the hospital one week. He had surgery Nov 14 and went back to work Jan 7th. He probably could have gone back sooner, but we had to wait for the appt for the follow up. He never had one problem with any pain from his butt from that day on. He is doing really well with the perm ileo and handling it all very well. He eats whatever he wants. He is much happier and is going on with his life and ours!!!!!!

Good Luck to you, I know it is scarry but before you know it, it will all be behind you.

I had terrible peri-ostomy skin issues, which meant keeping my barriers on and tight was next to impossible. I hate butt burn, fissures, and irritable pouch symptoms, but I hated worse the palm-sized burned area around the ostomy, the sometimes three hour barrier changes, and the complete disruption to my life with an ostomy, not to mention that I ended up on IV fluids and TPN twice before take-down. I will do anything to keep my j-pouch.

Have you tried Cipro? I can't take Flagyl because it introduced me to the concept of peripheral neuropathy, the pain of which over-rides my pouch many days . . . but Cipro has helped keep fistulas in remission, and I have not yet been diagnosed with true pouchitis yet. Cipro, and VSL-3 . . .

This message has been edited. Last edited by: Debra,

Hi

The removal was probably my easiest,
no complicatiosn whereas my
1st was supposed to a 1-step, the NYC Dr ran into issues/made some poor choices and I was in for 21 days with all kinds of infections;
takedown was about 10 days;
this past summers removal/ostomy was only 5 days, no complications.
(finding the proper appliance setup was a challenge not related to length of stay or pain)

I walked the 2nd time I awoke and did not stop.

Good luck

We I'll put my 2 cents in too and I know that hearing various experiences helps to prepare you for what can happen. I had my j-pouch removed and spinchter-sparing proctectomy but instead of a perm ileo I now have a k-pouch.

It is a tough decision to remove your pouch and permanently shut the door on returning to "normal". The only way I was able to make the decision myself was to come to grips with the fact that for me, it just wasn't going to happen. And living for the dream that "one day" they will find something to fix me would be living years and years in a kind of half-life between despair and hope. I decided I would just accept it and move on. You can only do that in your own time.

I had my j-pouch removal and proctectomy in May but since I also had k-pouch done I was in the hospital 10 days. Recovery was tough and I sat on a pillow for a long time. Took the pillow to church and to restaurants even (and I'm 29 so it was a little embarrassing) I decided if anyone said anything to me I'd announce very loudly "I had RECTAL surgery!" Then at least they'd be as embarrassed as me!

I think the major risks associated it with removal of the rectum is damage to the nerves of the bladder and of course the vagina. Also my surgeon had a urologist put a stent in the ureter so it could be easily identified and avoided. It came out the day after surgery. I have poor spincter function now (duh) but because I have some left I can actually squeeze them its kinda a funny feeling I can tell they close around nothing. I do feel like it is harder for me to hold pee in though (sorry if thats too graphic) I'm working on kegals to help with that.

I hope some of my experience helps - good luck!

--
katie

Erin,
I'm about as fresh off the operating room table as can be- I just had all of that done this past 3/11.

As far as pain goes, 99% of my pain is in the butt. I'm 5 weeks out as of yesterday, and still have pain down there, but everything is healing nicely according to my surgeon this AM.

I did have a complication that was self-induced which was HELL, but if you take your time and go SLOW, you should do fine.

I think the hardest part without question for me was the butt pain- it is very painful, but in the long run, I think very well worth it.

Like you, I had NO desire to ever go back to the pouch, so I adamantly refused the diversion surgery when my surgeons suggested it.

You've already been through the abdominal part of the surgery, so that wont be new for you, but again, the butt part is tough. (unless, I just have a WAY sensitive butt!)

I have no regrets- I'm eating ANYTHING/EVERYTHING in sight without worry, finally able to drink beer, again without worry, I'm sleeping like a rock (FINALLY dreaming again!), and no accidents/leakage at night! (Can't wait to get on a plane again, and LET myself fall asleep for a change!)

Feel free to IM/PM/email/call me anytime if you want to chat, vent, etc.!

//Todd

Thanks guys! Boy, I'm just so confused. Literally in a 20 minute time-frame, I can go back and forth 10 times over whether to have pouch removal surgery or not. Even though I'm in pain, I'm healthy and relatively active now and the idea of another surgery with recovery time and the exhaustion that comes with it is not something I want to go through. Then I think about how much the pain affects my life and I want it done tomorrow! I'm not as active as I want to be and find it hard to get motivated sometimes because I'm just so tired from hurting. I'm also irritable all the time which is really not fair to my husband and son. I'm tired of being irritable because I'm in pain.

I'm also scared of complications. My loop is working great and I'm scared that my end will somehow not work as well or leak, etc. I have a funny bump at the top of my ileo from a stich and I'm afraid that when they reconnect, it will cause major blockages. Finally, one of my biggest fears is that I'll do all of this and still have the pain! They don't know what the pain is, even after an exploratory last August (when I got my loop) so how do I know if it will fix it? My pain feels somehow "outside" the pouch and radiates to my buttocks. It's a pressure type pain but what if it's nerve damage and surgery doesn't help? At least I won't have to be expelling mucous all day long. The mucous in the pouch hurts and it seems I have cups full per day!

Thanks for letting me vent, guys. I'm just so confused. I don't want the disruption to my life that I know surgery will cause, but I don't want to continue living in pain either. I'm SO CONFUSED!!!!

Erin

Erin, I'm so sorry you have such a dilemma. All I can say is you will know if and when the time is right to make the decision. You are right, you could have the surgery adn still have the pain. Or it could be the answer. You just won't know until/if you do it. THat is the worst part of medical stuff...no guarantees any way you look at it.

I hope you find peace with a choice soon so you can shift your energies back to more enjoyable things. Let me know if you want to chat.

That's so strange. I've had the same sensations, though I'm sure not as intensly as you. I just had the first step of a revision surgery after they figured out I had efferent limb syndrome (it wasn't hard for them to figure out, so I'm sure they would have noticed if that was your problem). But I had the same things going on. I felt like the pain was outside of the pouch, kind of an ache. Sometimes I had a sharper pain that felt like it was shooting or radiating from one spot on my pouch to my butt cheeks, and even once felt like it was shooting down my leg.

Like I said, I'm sure they would have already thought of that, so I'm not saying we have the same problem. I don't know about you though, but my docs looked at me like I was nuts when I said how it felt (even after they knew what was wrong). However, I've had surgery too and there was nothing on the outside of the pouch. I guess our nerves are pretty tricky down there.

I can't imagine how tough of a decision this is for you. The permanency of losing my colon forever was devastating for me, even though it was killing me, so I'm sure another permanent step is just as tough. I'll keep you in my thoughts. Stay strong, we're all built of something amazing to be able to deal with all we do.

Wow Sara, you literally just described my pain exactly:
"I felt like the pain was outside of the pouch, kind of an ache. Sometimes I had a sharper pain that felt like it was shooting or radiating from one spot on my pouch to my butt cheeks, and even once felt like it was shooting down my leg."

I have had many, many tests and they have not found this so maybe that's not my problem, but what exactly is it?

Thanks!
Erin

Efferent Limb Syndrome? The limb of small bowel that goes from your pouch to your rectum is the efferent limb and apparently it can get stretched out. That's what happened with mine. When it gets too long, it starts kinking over when you try to go to the bathroom. As a result, I had been going to the bathroom less, which I thought was a good thing till the pain started. They thought it was pouchitis, so my surgeon treated me for that for a few months because he couldn't find anything else in the scopes, except that my pouch was much larger than it should have been. By the time he figured it out and sent me to Cleveland Clinic, the x-ray showed that my pouch was as big as a softball and all the loops of bowel feeding into it were about two inches in diameter. I just had surgery and the surgeon removed a few inches from my efferent limb. I'll find out in August after takedown if it's fixed.

Anyway, I have an s-pouch and apparently it is more common in those with s-pouches, which is why they prefer to use j-pouches. I went through waves of it. Some weeks were worse than others. I was sore and either felt urgency constantly or couldn't empty the pouch at all.