By the way I do not have cancer!

I have / had leakage only while sleeping and I was diagnosed with pouchitis.

Treating the butt burn is only treating a "symptom" and not the real problem. Do you have constant diarrhea? If so, why? I don't think the position of your pouch would cause you to have runny stools, but that is just my opinion.

Has pouchitis been ruled out? Has your doctor prescribed any meds?

I don't know if she explained it right, look up a drawing of a j-pouch. I think what she was trying to say was that she might need to tack it up or something. If I were you I'd get a second opinion at the Cleveland Clinic before having more surgery.

Have you been scoped? Have you seen your GI? It sounds to me that you could have a bad case of cuffitis with the bleeding and the burning butt. Has she given you any suppositories for this? Canasa, mesalamine, is what works best for me. I also use Anucort, hydrocortisone, ones during the day when I have it bad.

It might be as simple as getting a scope and treating your pouch cuff with suppositories. Inflammation of the cuff can be felt without having a scope so hopefully you can get an acute appointment, the ones the medical offices save for immediate patient needs, and get on suppositories sooner than later, if that could be the problem.

I waited too long to see about my cuffitis and developed a c.diff infection at the same time. If you are having water like and too many stools you probably should have your stool tested for it too.

I'm not trying to scare you but to spare you what I went through. My surgeon just gave me 14 days of Anucort suppositories at my year check up. I went home and scheduled an appointment with my GI who discovered the c.diff as well as the cuffitis during a pouch scope and treated my cuffitis more aggressively.

Just in case there's a misunderstanding: the butt creams can help prevent the burning but don't treat it once it's occurred. They work best when applied without fail after every bowel movement, to protect against the next one.

You seem very upset, and it can be hard to think straight when you feel that way. No one can know for sure if the position of your pouch is causing issues, but there are lots of things you can do to improve things right now, just like anyone with a new pouch: kegels, stool thickeners, and bowel slowers are routine for anyone with a new pouch. There are sometimes other things going on (and this forum makes them seem more common than they are), but these basics really have to be attended to.

Thank you all for the reply. I really never have diarrea my stools most of the time are formed. I was feeling great until my husband wanted to take me to Red Lobster well of corse it was way too saltyand that when the watery stools started they have almost gone away for the most part its every other time now. But since then I have had the worst butt burn its even bleeding at times and also I find myself really straining for things to come out, I would not say all the time but its daily for sure. Is that normal? I think it would pry help iff I drank more. havent been drinking as much trying to make this go away. I am just fed up with the whole thing to be honest with you, but I know I have to keep trying. Its only been 7 weeks but everyday feeling constant pain is alot to handle for me. since the Red Lobster this leakage has started up again to ,you know when the rectum was removed and the pouch was created.( same thing) What is going on with that?? I just do not know what to do anymore I am trying to do everything she tells me too. what do you think about the position of my pouch? then she says to me she may have to do it again in the proper position , well why didnt she do it the first time?? Well let me know how to approach all of this, I am seriously lost and not sure what to do! thank you in advance LKJ

Straining to go could be caused by a stricture, scar tissue, or inflammation it is hard to tell. It could be caused by the foods you are eating. I doubt it is the position of your pouch unless your pouch has prolapsed. Whatever is wrong please call your doctor and get in to see her now as you do not know what to do to handle this.

In the mean time I would change my diet to a soft one. Yogurts and protein smoothies, soups and things like that. You are talking of leaking and having to strain at the same time so it is really hard to deal with both of those things simultaneously with your diet.

There is just so much we can advise about, based on our experience on this site. The best for you to do in a case like this is to see your doctor as soon as possible. Your problems might have started when your husband took you out to eat but wouldn't have lasted this long and might not even have been the problem.

Please let us know how you are doing.

I would get a new doctor, get a 2nd opinion or go to the specialists at Cleveland Clinic (since you live in Ohio).

It sounds like the surgeon may have had difficulty with attaching the blood supply to the pouch and thus tipped the pouch to make this possible. The position of the pouch can make a lot of difference as far as continence is concerned. I ultimately had my pouch removed because of the same issues you are dealing with, leakage and butt burn. It is a nasty combination. If the leakage is caused by a "structral" issue there is no cure other than more surgery. It will probably get better with time but whether it gets to the place you can tolerate it will be for the future. Metamucil helped some with the butt burn along with A&D ointment. For leakage I kept a cotton ball tucked in outer anal area. Tincture of Opium also helped.

you do not live very far from the jpouch experts of the world at Cleveland Clinic. Can you check your insurance and see if it will be accepted at Cleveland Clinic. If so, then please get yourself there to get some help. I am happy to help guide you through the process of getting appointments. Just call your insurance company first and see if you can go there. They are the best. And it definitely sounds like you need better skilled doctors on your case.
hugs.

I did have the surgury at the Cleveland Clinic, I spoke with the nurse that did the surgery and she advised that it was the food I was eating. I have been trying to narrow it down but not having much luck. It has subsided a little though. But now I am dealing with abdominal discomfort the best way I can describe the discomfort is I feel as if I were kicked in the stomach. What Is it?? I am really concerned could this be just a part of the healing process or something else thats going on. I have called and they are acting like well you are on your own now, I did the surgery that you wanted and thats it! I am not very happy with the mds at the Cleveland Clinic they act as if they dont give a **** how you feel and that is very frustrating. I also having to strain to relieve myself in thr bathroom still. I have tried coconut water, i mix a little in my drink and it seems to work a little better as far as the straining goes. Now my stool is a little more loose and I not liking that because i get the butt burn again. I dont know what to do I was last seen in the end of Aug. are all these things normal is it healing or what?? I am fed up already almost wanting my stoma back. But I know that I do that this quickly that I will regret not trying and fighting to feel better. I feel as if I made a huge mistake having crohns / colitis for a diagnosis. With my ostomy I could eat whatever I wanted to I didnt have the worry of oh is this going to agree with me or not. Anyways I know I am all over the place, I just really need advice. With the j-pouch your they do remove the rectum right? Because they told me years ago when I was diagnosed that it was only located in the larrge intestine and the rectum, well if she did not remove all of the rectum, I feel that I am in alot of trouble because the disease was only in that particular area at that time. before even having the surgery they did testing to see if I had anything active and I did NOT! I just never thought this would be so difficult to go through well let me tell you its surely giving me a run for my money. Its been HELL!!!!! I NEED HELP PLEASE PLEASE PLEASE PLEASE thank you in advance But again all I have to say is the Cleveland Clinic is not all its cracked up to be. Yes they do more procedures but they dont have the skill to do it anyways that was my experience with them. I AM SO SICK OF BEING UNCOMFORTABLE 24/7!!!!!!!!!!!

One thing that helps is to decrease your stress level. I know its tough when you are struggling looking for answers and feel lost to stress to the extreme that could be increasing your issues. I don't think that is the cure but it certainly helps speaking from experience. Put some music on you enjoy, run a warm bath, and try and take some deep breaths so you can relax a little. This is the hardest advice to follow when you are feeling crappy. At 7 weeks post takedown some things you are experiencing seem normal. I had a lot of butt burn and leakage at that time and was extremely frustrating. I would definitely find stool thickeners I used Citrucel because it didn't taste like crap but use a quarter of the amount of water they suggest. Keep putting the cream on so it is not as intense the next bathroom trip. You might want to put a piece of toilet tissue in and change it fequently right now. Watch your diet of anything would cause looser stool. Taking the advice of the rest get a Drs appointment and be stearn dont let them push you off. Good Luck.

Phonix2g
thanks for the advice. My concern is I have tried taking immodium and ect. and all they do for me is ending back in the hospital with an ubstruction. I have already had to ubstructions from taking immodium. I am in fear of anything that slows me down because I am already straining at times to empty my jpouch. So then I was advised to try coconut water which helps with relieving myself but not my BUTT! thats my main problem right now is trying to first eat things that agree with me without having to strain so much. Then figure out how to cure this butt burn, it drives me bonkers its so uncomfortable. Thats my juggle at this time and I am trying to figure things out between the two. If you would happen to have any advice I would greatly appreciate it!!!!!

Well I am still having butt burn inside especially. I feel as if I have sharp razors up my butt and when I use the bathroom OUCH!!!!!! I recently had a pouchoscopy and she did several biopsys on the rectal cuff. they all turned out negative for any disease, thank GOD above. She did see some redness and swelling so she put me on Cipro and Flagyl. Well the Cipro did not agree with me so I am now taking just Xifaxan. I staryed taking it yesterday 12/7. I was reading up on yhe drug and it said after 24 hours if you do not see any difference then stop taking it. Well I am not seeing any difference, what is the problem then? Anybody have any suggestions?? My output has improved its not watery anymore, I hav been using the Mtamucil cookies before eating big meals and that has seemed to work pretty good althoughthe taste of the cookies is not that great.do you have any other suggestions on how to take it, I see on here that some people just use it once a day, I would really like that, but how? pillform, the drink, the cookies. How are you using it??? Thanks so much LJK

Oops I forgot to mention that I am doing the pelvic florr therapy and boy do I see a difference. I was even sent home with A divice I can use myself for extra therapy. The best part is my surgeon told me it was quite unplessant and its not! The PT did mine vaginally and she said the results would be the same, so I was happy about that. My incontinence is improving so maybe that is playing a part in the fact that my bottum is burning but like I said its in the inside too! LJK

I liked Metamucil in the pill caplet form, you can see the actual Metamucil in the see through gel caps. I used the generic Walgreens or Walmart brands as they are cheaper. Use those and drink less water than is called for with them. You still need to drink extra water just drink it at a different time so that the generic mixture will soak up more on it's way through your system. 5 capsules = 1 serving and 1 used 3 capsules 3 times a day but it is whatever you figure out that works for you. A good thing over the wafers is they don't have calories. I hope you get this all stopped SOON!

Thanks for the reply! You said you take 3 metamucil gel caps a day? Is this how you use them? Take 1 before breakfast then how long do you wait to eat after taking pill #1? then 2nd at lunchtime Again how long do you wait before eating? And then the 3rd at dinner time and again how long do you wait before eating? And what about snacks inbetween, do you have to take another pill or no? I think this is my biggest struggle at this time!My surgeons nurse said to me " well, you will never be happy with your choice until you start using the immodium or limotal. My response to her was " When I took the Immodium the very first surgery I had(removing lg intestine)an ubstruction. 2nd surgery tried it again and what happened, well I had another ubstruction. My body does not respond well to the immodium or the Lamotal, so Im trying other things and so far the immodium cookies slow just a bit but I think I need to try other things!! So I need your help, I will tell you this I am a female with height at about 5.6 and weight is about 95lbs right now. Before istarted all of this my weight was about 114lbs so i have lost alot of weight in my eyes anyways! So anyresponses would be greatley appreciated! LJK

Anyone else tried doing the pelvic floor therapy? I just started but I am already seeing results from it!!

The idea is for the psyllium (Metamucil) to mix with food, so just before or after a meal should do the trick (I take it before). One capsule is a very small dose, so it might well be insufficient. You could try more, up to a full dose (5 capsules) and see what works best for you. The effect is physical, not pharmaceutical, so you'll know how a dose worked pretty soon after taking it - certainly the same day. I get better results with the powder than the capsules, since the capsules didn't seem to mix well in my gut. The biscuits worked fine for me, too, but have more calories than the powder.

ljk,
Sorry I wasn't too clear. I took 3 capsules 3 different times a day with meals or light meals and like Scott says you need to find out what works for you. Metamucil is nothing like Imodium as it is fiber that acts to make your stool less watery and it does not slow your system down like Imodium or Lomitol does. It doesn't cause hard stools just mushy, I hope this makes sense. If you eat an entire wafer I believe that is one serving or the equivalent of 5 capsules. So as Scott says you can sprinkle on food but I can't stand that so I swallow with just enough water to do so and eat my food. The wafers you are eating are Metamucil NOT Imodium or Lomitol.

Imodium and Lomitol slow down the digestive tract.

Metamucil, Benefiber and Citrucil like products are fiber and bulk up the stool. Which is like little sponges which help since your colon is gone and not there to take the water out of your waste that it did.

Can you see the difference? Maybe your obstructions might have been caused in the past by slowing your system by using the Imodium or too much of it. It is hard to gauge over the counter Imodium at times. After my take down I took both Imodium and Metamucil and eventually dropped the Imodium and just took Metamucil. Now that I am 3 years past take down I take prescription Loperamide (Imodium) which is capsules as I have IPS. I now need something to slow my system down - go figure!

I'm glad the pelvic floor therapy is helping