Hi everyone. I'm new to the forum. I've had a J pouch for 5 years now and have been battling pouchitis for 4 years. I take erythromycin 500 mg twice a day and Zithromax for five days of the month to control my symptoms. The antibiotics seem to not be working as well anymore and I am worried about how long I can take them. My symptoms are just a feeling of sickness, weakness, my tongue and gums kind of burn, aching joints, increased heart rate and increased stools. I just feel sick, like I have the flu or something. Bowel symptoms aren't really that bad, just some increased frequency and burning. After taking the Zithromax I feel pretty good for a couple of weeks and then the symptoms gradually start to recur. I am considering a reversal, although don't know what is involved with that. Does anyone know how big of a surgery this is? It's such a big decision, but I feel like I should get the reversal done before I get too sick to have it done. I'm 54 years old. I really don't want to go on strong medications such as Remicade or 6-MP. I'm having a bad flare of pouchitis or something right now, where my butt is really burning and painful. I'm worried I have an abscess or fistula. I had tried Cipro, but it didn't work very well. I got bronchitis and my doctor put me on Zithromax. My pouchitis symptoms responded so well to Zithromax, even though it is not usually the antibiotic prescribed for pouchitis. So the Zithromax was just discovered by accident. I just don't know what to do. If I have the reversal with an ileostomy, will I be better? I also have been on VSL#3 for a few years, which helps replace the good bacteria that all these antibiotics kill off, but does not help the pouchitis. The gastroenterologist doesn't really seem to advocate the reversal, he says that nothing is worse than the bag, but I don't think he understands what it is like to be sick and taking so much antibiotics all of the time. Any input or information would be very much appreciated. Thank you.

Barbara

I am sure there are plenty of people here who would strongly disagree with the view that "nothing is worse than the bag". It's overly-negative as there are plenty of people who have had given up on their pouch and are a lot happier with the bag. The main downside (apart from leaks etc) is body image and it's a personal thing - for some people it's a lot more important than for others and obviously age is likely to be a factor in this.

If you haven't tried Cipro or flagyl yet (which I find hard to believe as they're normally the first line of treatment) then you could consider giving either/both of those a go first.

Barbara,
I'm a recent convert back to a permanent ileostomy, and I can tell you that the way I feel physically is night and day!

I had everything removed, my butt sewn shut, and have permanent/end ileostomy.

The most difficult part so far has been the butt pain- it's a VERY sensitive area, but I couldn't be happier with my decision.

Like you, nothing worked for me, then I was diagnosed with Crohn's and there was no way I was going to take Remicade or Humira.

If you are in fact constantly battling pouchitis, then if you go with the perm ileo, you should feel 100% better with the ostomy, but obviously, you need to discuss all that with your surgeon.

All I know is that after step 1 with my temp/loop ileo, I couldn't get over how good I felt, and was hesitant to go through with the take down.

After my last surgery on 3/11/08 to remove everything and go back to the perm ileo, I'm there again!

I'm still adjusting to the appliance and stuff, but as time goes by, it's becoming less and less of a big deal. I'm excited to try new products, and am enjoying the challenge of finding systems and habits that work for me. (i.e. changing everything, finding clothes that work, etc.)

I'm eating everything in sight, sleeping through the night and feel like a million bucks!

//Todd

I'm thinking you need to find a new gastro. That's completely out of line. There are now quite a few members here who've had the reversal and I'm sure they'd be more than happy to talk with you. Todd (above) is a newbie and there are a couple of others who've recently had the surgery. JillM and Shell are two other converts and they both say they wish they'd had the reversal surgery sooner. Jill is on pregnancy number two with her new plumbing - something she says she wouldn't have been able to do while she was pouched. I believe all of the reversal people here are like Todd and are thrilled that they are experiencing life again.

My only other suggestion is to get a second opinion from a doctor who is very familiar with j-pouches to see if your symptoms might be caused by something else such as cuffitis or irritable pouch syndrome. Those can usually be easily medically treated. There are some very good doctors at UC San Francisco and at Stanford.

But if you've had enough, then you've had enough. That gastro of yours hasn't walked in your painful pumps and he has no right making that statement.

kathy

Thank you, MikeH and ToddL for responding. I agree, Mike, that the GI is being overly negative about an ileostomy. I had an ileostomy for 8 months after my first surgery and it wasn't the greatest, but it's certainly something you can live with, particularly if it makes me feel better. I can get over the body image problem, but my main problem is that I am just afraid of having the surgery.

I had a lot of complications with my first and second surgeries. The first surgery, everything seemed to go great, in fact the surgeon called me a model specimen and was so proud of the outcome. I had a terrible headache after the operation though and nobody really addressed that, but when I started to see double of everything, they did a MRI of the brain and it turned out I had subdural hematomas, which are blot clots around the lining of the brain. I had many specialists in to consult to determine why this happened, and the only thing they could come up with was vascular weakening due to long term prednisone use and the long 8 hour operation. I also got postoperative infection and had to be hospitalized a couple of times with that which ultimately got better after a consult with infectious disease specialist who put me on a antibiotic for a month. I had the take down operation 8 months later, and was in the hospital for two weeks with blockage for some reason. Had an NG tube and had to be fed intravenously.

So, now I am petrified to undergo another operation. Were your reversals done laparoscopically or an open surgical procedure? How many hours was the operation? Did you have infection complications? How long is the recovery? What I am afraid of is getting some sort of infection that is resistant to antibiotics. I'm afraid of having the operation. There are so many risks associated with surgery. But I am to the point where I want to get rid of this pouch because I know it is making me sick and I know it can't be good to be on such high doses of antibiotics for years that are not working as well anymore. I was put on Cipro and Flagyl at first but it really didn't help my symptoms very well. I know it's the first line of treatment and nobody would think to use Zithromax to treat pouchitis, but my pouchitis symptoms were dramatically better after a course of Zithromax was given to me for bronchitis, so they just kept me on that for the pouchitis.

Thank you, Todd, for all your positive input. I'm so glad to hear that you are feeling well post ileostomy. It sounds like you are not having any symptoms from the Crohn's then? Do the doctors tell you the butt pain will go away? Isn't it great to not have to be on any medications. I am having a sigmoid next week and the GI doctor will take a look at the pouch and then I think I'll ask for a referral back to the surgeon and have a talk with him to get the details of what is involved with the reversal surgery. I own a plumbing business and am worried about taking time off work, nobody knows how to do my work but me, and I hate to put my husband and family through all this. There is a little voice inside of me though that tells me that I need to get this done though before I get too sick to have it done.

Thank you so much for responding. I desperately need someone to bounce thoughts off of right now in trying to make a decision. Obviously, I need to talk to the doctors, but I feel like I get a lot more information from people who have been there, done that.

Stay healthy!

Barbara

I just saw your post, Kathy. Thank you so much for responding. I think your advice is very good. This gastroenterologist I am seeing is supposedly very good, but I'm not seeing it. He is nice enough, but is always rushing me out the office. He gives you your 5 or 10 minutes and then that's it. If I had cuffitis or irritable pouch syndrome, how are they medically treated? I have often thought of going to Stanford or UCSF for a second opinion. I'm only 45 minutes away. Do you have the names of doctors you would recommend? I would feel much better about making a decision if I had another opinion. I don't think my current gastro has a lot of experience with J pouch issues. He did tell me he had one patient who is suffering so much he is going to get the reversal, but he just acts like this is the worst thing! I think it's bad advice, because like you said, he obviously doesn't know what I am experiencing on a daily basis. He acts like it is no big deal, and it is a VERY big deal.

I went to a CCFA seminar in SF a few years back and listened to a few doctors from UCSF and Stanford speak, but I don't remember their names. I do remember Dr. Terdiman (appropriate name), but wondered if you know of one in particular who has a lot of experience with J-pouch issues. I would greatly appreciate it if you could let me know and I will go that route. I have learned so much from what I have been through and one thing in particular I have learned is to not trust the doctors. It's important to do your own research. Thank you so much for helping.

Barbara

I cannot believe your gastro said that...definitely find a new dr. Some people do indeed feel that way about an ostomy, but it should be about how YOU feel, not how the dr feels about it.

There are two ways to go here - disconnect the pouch and get an end ileo, or get the pouch out and get an end ileo. For many people just disconnecting works. It didn't for me; I tried that first on the advice of my surgeon but got worse, so then had the pouch out. Disconnect surgery is quick and pretty simple - about 45 minutes and same recovery as your takedown (without all the bathroom trips). Pouch removal is big deal surgery, more complicated for the surgeon than pouch creation and you have the butt issues ToddL mentions.

You may be able to disconnect laproscopically, but you cannot do pouch removal laproscopically.

I, however, didn't have any of those problems. Healed from pouch removal faster than any other surgery and with no complications (a first in 4 surgeries). I did use a mind body program in the weeks leading up to the surgery and I do think it helped speed up my recovery. I'm now drug free, pain free, sleep through the night, eat what I want - basically enjoy living my life.

As Kathy said, I had a baby in Jan 2006 and am going to have my second (and final!) in July of this year. Couldn't have even thought of it with my j-pouch. I was 30 when my pouch was disconnected, almost 32 when the pouch was removed, almost 35 when my first child was born and I'm now 37. I have the ostomy for life and knew that going in, but was so unhappy with the j-pouch, I was willing to take on any possible complications. I got lucky and had none.

Ostomy is no big deal to me or my family. I change my appliance 2x a week, other than that things are pretty normal. Let me know if you have questions.

Thanks Jill for the information. I am so glad all is working out for you, you've been through a lot also. I would like to think that just disconnecting the pouch laparoscopically with an end ileo would work for me, but my "gut" feeling is it won't for me either. I think the whole thing should be removed. Obviously, I need to speak to a surgeon or two before making the decision and they can give me the rundown on how involved the surgeries are and what they recommend. With the end ileostomy, how different is it from the loop ileo. I understand it is easier to maintain. Does it not drain as fast? I had issues with sodium nd potassium with my temp ileo. Do you have electrolyte problems with the end ileo?

I am so glad I found this support group. . . a lot of great information and wonderful people. Thank you for taking the time to support me!

A couple more questions, Jill. Do you think a reason you had no complications on your last surgery when you had the pouch removed was because you had an open surgery? Were your other surgeries laparoscopic and the last one open? Is there less chance of infection when they open you up? How long did you recuperate from the open surgery? Just curious. I know the healing is so much faster with laparoscopic, but wonder if the chances of infection may be greater? My experience was not very good with the laparoscopic. It's great, I hardly have any scars and they didn't have to cut me much, but had a problem with infection. Or, maybe just getting that pouch out of there made the difference with your last surgery?

Hi Barbara,

You seem to be in the same position as me, with chronic pouchitis and facing a future that is a/b dependant until they don't work anymore, then immunosupressants, then steroids....

I have made the decision to have the pouch removed and perm ileo, scheduled for July 22nd, as my daughter is getting married in June. Just today had a visit from the ET nurse, who gave me some samples, and was very supportive. I am 58 and feel that it is better to have this surgery done while I am relatively fit and active

It's a hard decision, but I feel it is the right one for me now, at the same time I am under no illusions that recovery is sometimes slow and difficult......

Just to say that you are not alone, best wishes.

Marina
Cross by name but not by nature

Marina,

I feel the same as you. I think I should have the surgery before it's too late. I may become debilitated with this pouch, or just getting older is higher risk. I am not willing to take immunosuppressants or steroids to try to keep the pouch. Prednisone already almost killed me once. Good for you that you have the surgery scheduled! I would love to know how you do post surgery.

It really is very supportive to know there are others out there with your same problems. I felt very alone with this, there are not that many people locally who have these issues. I sure wish I would have known about these complications before I had the first surgery though. I don't know if I would have listened anyway. . .

Best of wishes to you! I'll be thinking of you in July. I hope when you are well enough you will send me an e-mail or post a message.

Barbara,

Yes, I will post as soon as I can after the surgery. It seems a long way off now, but time passes quickly these days, a sign of getting older, I think.

Best wishes to you.

Marina
Cross by name but not by nature

Barbara,
If it weren't for me checking out of the hospital after 4 days, and then sitting around in an airport and airplane all day 7 days after surgery (had the staples removed from my abdomen on the way down to the airport), I'm convinced I would've done great.

My pouch removal was open abdominal, just like my step 1. My take down and gall bladder removal was done via laparascope.

My surgeons scheduled the OR for 4 hours for my pouch removal, but were done in an hour and a half, and said it couldn't have gone any smoother.

The complication I created for myself was a baseball sized hematoma in my pelvic cavity which was excruciatingly painful!

Like Jill said, if you just do the diversion with end ileostomy, they can do it via a laparascope and is supposedly a piece of cake compared to what I did... as a matter of fact, my surgeons tried to convince me to go that route, just in case I wanted to go back to my pouch... yeah, right.

//Todd

The doctors I've seen mentioned at UCSF are Julio E. Garcia-Aguilar, Madhulika G Varma, and Jonathan P. Terdiman, M.D. Here's a link to UCSF (I can't get a link to work so you'll have to do the 'search' thing when you get there): http://www.ucsfhealth.org/adult/cgi-bin/prdListDoctorAl...cgi#Gastroenterology

Here's a link to the gastro department at Stanford.

Good luck - I hope you find relief soon.

kathy

This message has been edited. Last edited by: kathy smith,

Thank you so very much, Kathy! I am going to call my doctor in the morning for a referral. I feel like I need to get opinions from Stanford and UCSF before I make a decision about a reversal.

Todd, also thank you. My first surgery (colectomy and creation of J-pouch) was about 7-1/2 hours long, so I assumed this surgery would be equally as long. Maybe it takes more time laparoscopically? I need to speak to the surgeon.

Gosh I don't think I would be able to get to an airport and fly after seven days! That's so great that you are happy with the results--it's very encouraging to me.

Thank you all for your input. It's been very helpful.

Barbara