antibiotics....without them I always have butt burn. Some people have bacterial overgrowth and not the typical pouchitis. This is just my experience and I have had my pouch almost two years. Without antibiotics (even missing one day) my back end burns constantly and I only had mild pouchitis in my distal pouch when last scoped. I don't know how you lasted this long....

Do you have a bidet, bidet seat or sprayer to clean your bottom every time you go? I don't see how you have been able to stand it either I still get it now and then plus I use a hand held sprayer.

Have any of your doctors done a culture of any sorts?

I used an old remedy when my red headed baby, with very sensitive skin, had a killer diaper rash. It couldn't hurt for you to try. Use an Iron skillet to slowly cook plain flour with no other ingredients. Constantly stir and it turns a light brown, tan color. It worked really well, plus was cheap.

Debbie - I think some of us are just blessed with this. Nice, huh? I've tried everything and nothing makes it go away. I use Ilex skin protectant when it's bad. I recall that I mentioned this to Dr. Schrock in the beginning and he said, "it's just something you'll have to live with." That did not make me at all happy.

I do have a COCO bidet now and I love it. It does help. But again, nothing makes the butt burn go away for me.

kathy

How I really wished my surgeon stressed the chronic nature of this issue that can occur for the less fortunate of us with a jpouch

Thanks everyone. I have a bidet and use ilex, etc. I don't exactly know how to explain this -- the burnin is not my external skin. It seems to come from deep inside. Sometimes it seems to be nerve pain, at others it's been a fissure. My doc thinks my nerves were damaged during surgery. Today she suggested it could be herpes simplex 1 (very common and easily transmitted -- not sexually). Any thoughts?

They can test for that with a scope and biopsy. I had it done and came back negative. The burn you are describing is very similar to what I experience with chronic cuffitis. I have ulcers that do not heal even though they do not bleed all the time. This problem gives me my share of anal pain, burn and discomfort. Not sure if that is your issue or not as I am not sure what damaged nerve pain feels like.

I just posted asking about Cholestyramine, a fellow j-poucher says he takes two packets a day to lesson butt burn. I may ask doc for prescription and try it. Hope this helps.

FYI
Cholestrylomine (sp?) removes acid and I have a prescription that I've never used because my GI said I needed to be very careful. He said to make sure I took it so it would not bind up my other medications. It binds things so if it binds medications it reduces their efficacy. You all probably don't take as many as I do but I take medicines 3+ times a day.

I have had the same butt burn issue however, after being scoped I saw (pictures) of the ulcers still there. I assume that is why they are talking about 2nd surgery to get rid of what is diseased and dropping the pouch and hand stitching it the anus. I use the HC suppositories of I can not tolerate the pain however, nothing is a cure. I am using an aloe vera gel which helps a a lot on the outside issues. They have never given me the option of antibiotics. My lower back always feels inflamed any body having that issue as well.
I really thought medication would be behind us (excuse the pun) by now! It just isn't soooo!
Frustrated!
Roberta

Roberta,

The antibiotics really help the butt burn. Without them I am dead.

I just got an email back from my surgeon at CC who told me they can salvage the pouch 85% of the time as long as you do not have crohns. So when am I supposed to find out if I am a candidate for pouch advancement? At the time of surgery?

Those are pretty good odds. I would imagine that at CC they do their due diligence and do not recommend pouch salvage if there is a reasonable chance that Crohn's is likely. Plus, understand, even if this turns out to be Crohn's, I believe the failure rate is about 50%, so still not a sure thing that an attempt at pouch salvage would be a waste.

Jan

RLC, I don't have lower back issues but this is weird my left butt cheek will ache when I am not on the antibiotics and sometimes my tailbone hurts. Not sure of the relation with the j-pouch but I have never had these issues before.

Thanks Jan for your reponse on this issue. My pouch always seems to be in decent shape. It is the anal area that is the issue and the possibility of stricturing even after hand sewing the pouch.

jeane,

I think it's good news from CC. I thought you had chronic pouchitis too. So if they do pouch advancement can they fix your stricture as well? It looks like you have some good choices for a change.

Holly M my back feels better when I lift my butt cheeks up. It sounds crazy but I can feel the inflammation when the cheeks go up it takes the pressure off.
jeane I am so surprised that my GI has not recommended antibiotics for me, as of yet. As far as the pouch advancement that is what I am up against not sure if it is crohns and if it is not a sure fix. Not sure what I am going to do! I keep loosing weight again so I am back to seeing GI in a couple of weeks...have the dx of malabsorption syndrome now. Great!

Roberta

Ask for cipro. I can manage the anal pain and burning while on it but since I also have a structure it reslly slows my output to a halt and results in a lot of straining which is not good. Having a scope soon and will most likely book the surgery as it is an 8 week wait. I need to get on with my life after almost two years of this nonsense. Hope you feel better and let us know how you make out. I would demand the antibiotic.

Thanks everyone. I think cholestyramine is similar to sucralfate which I sometimes use, with mixed success. I have no cuff (hand stitched re-do and there were no ulcers seen near anal opening when scoped). Going to try diflucan (yeast components) and maybe flagyl. If no good, will have to return to Cleveland to see what's going on. What is pouch advancement? I'm wonderif if it's what I had done at Cleveland?

Thanks

Wow scallop. Those were the questions I just asked the nurse at CC. I wanted to know if rectal meds or antibiotics would still be needed after pouch advancement surgery. They detach the pouch, perform a mucosectomy and i believe remove the 1 centemeter of diseased rectsl cuff and then hand sew the pouch. It sounds like that is what you had done. Did you have this done for chronic cuffitis like I have? I also have a stricture at the anastomosus.

jeane you have decided to have the surgery? That is my dilemma at this time. My thinking is I am not even a year out from initial take down and is this too soon for me. I feel my body is depleted still however, I can not seem to get on the right road. My symptoms are so much like what you describe. Still not sure what to do!

Roberta

I have been dragging my feet for months on this as aside from the stricture, I am pretty functional on antibiotics. I have been on them pretty much constantly for almost two years. Without them, the anal burning and pain are excruciating for me as the stool is more liquid and acidic and my frequency goes up. Also, the cuffitis becomes unbearable. With antibiotics I feel almost as if I still have a colon.

My worry is if I delay this longer what shape will my anal canal be with regard to sewing the pouch. Believe me I do not want to have this surgery as I just see it being a slippery slope for the beginning of more issues and potential pouch failure. The Canasa just seems to further aggravate my cuffitis.

Please let me know how you make out with regard to possibly requesting antibiotics to help you. Cipro works the best for me. I hate the meds but it is the lesser if two evils for me and after all I have been through I am desperate to do anything that could potentially spare me more surgery.

RLC,
I am almost two years since my takedown and have had issues pretty much from day one. I do not think this miraculously goes away after time if you have had issues from the start. Wish it was not this way

Thanks jeane for your input! I am left with the same options as you, I guess. My GI and surgeon have both mentioned this operation for the get go. I asked my surgeon about CClinic (he trained there) and told me that he can do this operation. I have faith in him for sure. However, I do not want to have to go through everything that I have been through up to this point. Picc line, NG tube and just starting over again! Fear is the big issue for me since it has not even been one year yet. Still trying the acupuncture and hoping for a magical cure to all of this!
jeane we are always asking ourselves do we just stay on the course we are on (cipro or any meds that we are all taking) or do we just gamble on this surgery, again. Have you spoken to anyone that has had this surgery on this site? If so, are they any better off.

Roberta

Roberta,

I only know of a couple of people who have had this done and seem to be doing fine. I do know it is a very complex operation and the risk of incontinence is a real one. What bothers me is going through all of this and still needing medications. I had the jpouch surgery to get off medications and I am on way more than I ever was with my UC.

Dear Roberta and jeane,

I'm probably reading more into my problems than I should but I see no end to my pain and suffering. I had the surgeries as I refused to take prednizone again or remicade etc. at my age. I'd had UC so long cancer was becoming a real risk.

Now I'm on pain medication and 24/7 and it just dulls the pain I have chronic cuffitis and IPS. I have other health problems and I'm practically confined to the house.

Have either of you looked into a K-pouch or BCIR (I probably have those initials wrong)? It will rid us of cuffitis and butt burn. I don't think I've ever had pouchitis but think we can still get it with a drainable pouch. I'd rather have and internal pouch than an ostomy again. How long do we try to make this work before we throw in the towel? I have not looked into the surgery you guys are talking about but need to. 2 years after my take down is long enough to make a proactive move. I don't know if having a surgery for anything is worth it as will it end my abdominal pain? According to the doctors I have adhesion pain.

Are you in pain requiring narcotics? Is your pain tolerable so you can go places when you want or need to? I take Norco 10/325 up to 4 times a day and dicyclomine (for my IPS) as well. As I said above the medications dull my pain.

TE,

Just took a xanax for my abdominal pain. Lately I cannot sleep as the pain wakes me at night often. I have it constantly on the left upper side (feels like a knife stabbing me) and I cannot see how this would be due to adhesions in my case. I have requested an upper endoscopy and probably will have a barium test of the upper bowel (never have had either of these before) and one last repeat pouchoscopy and then make my decision from there. If there is even the slightest question about crohn's or peri-anal crohn's or I have significant inflammation even on antibiotics, I am opting to remove the pouch and be done with it. I do not want to go through two more operations, a possible midline incision, another temp ostomy, only to be hooked back up and have this potentially fail again. Mentally, I do no think I could handle it. Many days lately I feel like I am on the verge of a nervous breakdown with these health issues and chronic pain so I understand your frustration.

jeane,

I take xanex too but for anxiety. It probably helps you sleep, is what you meant. When you feel on the verge of a nervous breakdown do you take a xanex too?

I already have a midline incision that has been used for 3 surgeries. Surgery #1, then for #2 take down as I had an abscess under it and the triple was for an incisional hernia surgery. That one was supposed just be an inch or so but he had to open it all up again because I had a "big hernia". So I hear you about that. Your lapro had a lot of benefits compared to my open surgeries.

I had an endoscopy a few months ago as needed dilated at the base of my esophagus and to check out my GERD. Look on the bright side, no prep.

I've also had the small bowel study too. Please stress to the radiology tech that you do not need nearly as much of the barium as a coloned person. I told my tech I didn't have my colon so didn't need to drink as much. The problem is she didn't understand I was talking about my large intestines. I could have slapped her after it was over, for being so stupid. She was checking me every so often and it was all the way through to my j-pouch while I was still drinking that crap. When I figured it out she immediately got the radiologist. Make sure you look at it too, the still X-ray, as it is cool to see how your intestines and j-pouch look. It's all white, like cement they say, in a sea of black.

I'd still rather have another open surgery than a bag again. I know a permanent stoma is supposed to be night and day from an ileo but I hated it so much... Plus I have not had pouchitis yet. If you could still get it there you are right in not going in that direction.

I emailed my doctor and her nurse ordered Flagyl for me down here in FL. I was going to try to arrange a scope but decided, with Jan's help, the easy step was to get Flagyl. If it's my c-diff back then the Flagyl is the medication or if it's pouchitis it's good for that too. I'm already treating for cuffitis and IPS.

I'm going to read some posts in the K topic here and look into all that goes with that kind of pouch.

I hope hope hope they find out something in your upcoming tests so they can treat you with out the advancement.

You guys certainly are not the first to have this dilemma to deal with and plenty have opted to just go for the ileostomy. I think it all depends on how motivated you are in any direction. But, the bottom line is that there is no guarantee with any option, medical or surgical. Each surgical option has its own set of problems and pitfalls. On the surface, continent ileostomy seems like a logical choice, but it has just as many, if not more risk of further surgery than the j-pouch (and that is the reason the j-pouch has pretty much replaced it). Chances are you can be lucky and go the rest of your life with a trouble free k-pouch or BCIR, but I would probably not opt for it unless there were local surgeons who could deal with issues of slipped valves and other complications. But, that is me. The end ileostomy is the simplest procedure with the most data available, and any general surgeon could deal with nearly any complication that might come up (yes, even end ileostomies can require revisions, have hernias, etc.). Some people opt to leave the pouch in place, like Cataja, and do well.

But, even then, there is no guarantee you will not still need medications. I know this is like being between a rock and a hard place, with no great solutions, just mediocre ones... Everyone here who decided to go with the end ileostomy have been happy with their decision, except for one that I can think of. That person was allergic to every single ostomy appliance adhesive, and had to travel a long distance to get the k-pouch.

Best wishes in figuring this all out. I think one thing is certain. At some point you have to choose, or go crazy.

Jan

I totally agree with you Jan. I do see think o fm dad who had an ostomy over 25 years ago for UC has not had one single issue. No medications, no hernia, no additional surgeries. He said once he adapted, he was fine and even forgets about it. He has the nastiest surgeon you could ever imagine, and did thngs to him while we were in the hospital room that I was appalled at (yanked the nose tube right out of him with all of us in the room and literally brought tears to his eyes), but he was the finest surgeon around technically at the time.

I imagine most of the anxiety we deal with is often self inflicted, and it is a matter of coming to peace with whatever you decide, good, bad, or ugly. I know that I fought tooth and nail not to have a colectomy, but once I decided that was the inevitable conclusion, I really warmed up to the idea of the j-pouch and wanted it done yesterday. I am doing pretty good now, but know that some day, everything could go sideways and I am forced to choose again. I just hope I don't have to do battle with myself about it (again).

If you decide to just throw in the towel, don't think of it as giving in to defeat, but just choosing the path of least resistance. There is more than one way to live well, and it is possible with an ostomy (or so they tell me!). It is not a contest of will between you and your own body.

I think at your next visit at CC, they should be able to give you the risk ratios for each of your options.

Jan

I love it Jan, Choose or go Crazy! I'm interested in what you are going to find out at CC Jeane. It's hard to choose between things that are the lessor of potential evils.

I'm going to pick up my flagyl prescription and I'm sure if it works to fix whatever is causing my current problem I'll get some hope back. Good thing I was a Pollyanna when I started going down the surgical road....

Well said Jan.. choose or go crazy. I was there. Even my husband was there. And as the months went on.. the crazier I got!

I think my husband chose first - telling me I just couldn't stay as I was with the disconnected jpouch and diverting ileo - as he just wanted to stop hearing my whining I think! (and of course just wanted me to get out of pain) But he encouraged me to choose too and despite problems with wound healing.. I still love my choice!

Jan love the message choose or go crazy but it is so hard to go back to where we were months or years ago and walk the same walk all over again. If and when I decide on the surgery I will tell my surgeon I get a NG tube while I am under and a picc line for nutrition while I am under the knife. I can't go through that torture all over again and it hasn't been a year yet.
Jeane and TE Marie what a long road you guys have had and my path is right behind you both. Not sure what to do either. Acupuncture seems to help a bit but getting very expensive. Looking for a cure knowing that there isn't a cure! I am on dexilant 60 mg., probiotics chewable and liquid form, feosol (anemic), flaxseed oil. I have HC suppositories and dicyclomine but I try not to take them. Wanted to get off all the meds and here we are back to the beginning, again! Oh yeah and now I have to see another surgeon for lesion on chest which came back as squamous cell carcinoma. Does it ever end!!!!!
I hope we can all make the right decision for ourselves soon!

Roberta

So sorry Roberta. Best wishes for positive results.

I just went through something similar in that I had an endometrial biopsy for a polyp and thankfully it came back benign. I joke (but not really) with my husband that I do not have one functioning body part (cysts and calcifications in breasts, cysts in liver, polyp and fibroids in uterus, gallbladder polyp, small blood clot, and now a nonfunctioning jpouch), Uggghhh.

jeane I have the same issues in my breasts, as well. I can not tell you how many aspirations I have had to biopsy the cysts. They turn into hard masses after a time. First year 2012 that I did not have to do an ultrasound in 10 years. Uterus gone in 2002 (had full colonscopy before operation and colon was nice and healthy then) as well as appendix in 2008 (benign mucinous adenoma).
I wonder if all our health issues are related to the meds we have had to endure and the disease. My other siblings are all healthy! Go figure!

Roberta

I keep saying I don't have too many body parts that are removable so it ends now!

Roberta, I am so scared for you and your skin cancer, not sure but that's what it sounds like to me. I hope it is something that can be successfully treated.

I'm had all my female organs removed too, numerous ultra sounds after mammograms and needle breast biopsies too. I have full fledged fibromyalgia, neuropathy in my feet etc. I get a massage every other week as it is the best thing for my fibro and feet too. I've gone to acupuncture and it helped some but I didn't feel the cost was worth the temporary relief I felt. Plus it didn't help my abdominal pain. I agree with you on that one.

Do you have cramping abdominal pain? I take dicyclomine for it. I dislike taking medications too. I tried another antispasmodic, it made me sick so I went back to dicyclomine.

It sounds like we all have many health problems. I can't tell what is causing what pain. Is it cuffitis, adhesions, fibro, arthritis, etc.

Please post when you are getting treatment for your lesion as well as your j-pouch. I wonder if any of the lesion treatment will help or hinder your j-pouch.

Take care

HOPE

After all of my complaining and feeling sorry for myself I have come to the conclusion that I have c-diff and it's been back for a while.

After just ONE day on Flagyl my frequency and pain have gotten better. I don't know why I didn't realize it before. I've been having problems every since my surgeries. Including an out of control Thyroid.

I didn't have a stool test, as I am away from home. My Internist called me in the prescription. I thought it could be c-diff or pouchitis. I have not had a pouchitis ever, that I know of. I had a case of c-diff before, around a year ago and it took 3 rounds of flagyl to get rid of it.

Sorry for all my griching and moaning on this thread.

Thank you TE Marie for your thoughts. I don't worry until I need to. I go 2/12 to the surgeon for the lesion and will no more. I go back to GI 2/14 so I will inform her of the outcome and stay tune.....!

All the best to all of us -

Roberta

Good Roberta,you don't have to wait long.
Take Care

Hi Jeane -- I'm sorry I never replied to your question from February. I had the pouch re-do because I had a chronic abcess and leak at the anastamosis which had been there since my initial surgery. Did not have chronic cuffitis.