So much pain with Pouchitis please help. Aussie.

You may have inflammation in your cuff which is cuffitis. This may cause all the pain and burning you are referring to and is usually treated with canasa suppositories. You are also very early in your recovery and this is very typical of the healing process. Warm baths can help as well as creams and even pain pills if you have them. If you can use plain water to clean and pat not wipe with tissue that can help also. Calmospetine is also a good cream, but it does have some menthol so it can tingle and burn when you are raw. I found warm baths as often as possible helped during this time.

Thanks Jeane, Ive been using baby wipes instead of toilet paper. Cuffitis.... can you get that if you have no rectum. Im about to head to the chemist to get some slippery elm... it may help??? Also I thought of irrigating the pouch. What do you think?

If you have any rectal cuff at all (even a couple of centimeters) you can get cuffitis. I have never tried slippery elm but have heard others recommend it for inflammation. Let me know how it goes if you get it. I would not feel comfortable irrigating my pouch. With all the inflammation you may have below I would be careful about anything you insert. They may even want you to wait a bit to insert a suppository if they prescribe any for you.

Ive just come back from the ED... this pain is too much for me. The Dr there was very nice and got in touch with my surgeon who has prescribed another antibiotic to take, along with the flagyl Im already on. He said that Im to give it 48 hours and if Im still no better Ill have to do the 7 hour drive to Perth to see my surgeon. I mentioned the cuffitis, but He said no, I have nothing of my rectum left. Thanks so much for your help!

Temples,
I am so sorry you are in such pain. Please keep me posted as to how you make out as I will be thinking of you. If you feel that bad, I would try and get to see your surgeon if the meds do not help. You can request augmentin which is what I have been on for a long time. It is one of the strongest antibiotics.

I had pouchitis for an entire year after my 2nd surgery. Every time the antibiotics ran out it came back. Doc kept upping the dosage and duration, and second try of 1000mg Cipro per day for 90 days finally worked. The pain only returned when the antibiotics stopped (it didn't hurt for the entire year). Don't be afraid to keep calling your doctor. Hope you are better soon.

BMcK.. a whole year? OMG Thats so unfair! Thanks Jeane. I just cant believe this is happening! After all the (14) years of suffering with UC, the surgeries, the ostomy, and now this! When do we get a break?! It is just so unfair.

Right and after several nights of nighttime leakage, I am feeling pretty demoralized now. I know when I see my surgeon if we cannot find some other meds to help me where my situation is heading..... Almost two years of complete and utter nonsense since I had this surgery that was supposed to CURE me of UC.

temples and jeane are am right with you guys...can't catch a break.

temples - I too have had nothing but problems since takedown 4/30/2012 was my day. I had your pain and still do. I went to my GI instead of my surgeon this time. She did a quick check and saw I had blood in stool still. She did a sigmoidoscopy (I was put under this time)can't stand anymore pain and found I still have UC in my anus. She prescribed steroidal suppositories. My surgeon had me on canasa earlier on but that did not work. The steroidal suppositories seem to be helping me, now. I have to go for another j pouch o gram Oct. 9th. Have they scoped you and are 100% it's your pouch?
Jeane get in touch with your GI doctor, too. I was completely lost and I love my surgeon but I was still having problems and going all the time.
From what I know now, I guess for some it is a cure having the j pouch and for others it takes alot more time to adjust.
Still adjusting -
Roberta

certainly not much of a "cure" when we have issues, complications, struggles. a better alternative than colitis? yes... but "cure", i don't know.... pouches are man-made, imperfect, and as my doctor says "we never know how someone will be with a pouch until after we build it". 2 years is a long time, jeane. you have a lot of strength and patience. i wish and pray we all have better days ahead and these are just crazy blips in the first 1-3 years of a j-pouch. then hopefully things will settle down more. initially butt burn can be brutal, and i hear eventually settles down. temples, you are still quite new to the j-pouch, so things may be up and down for a while, as you adjust. i am 4 months out now, and just now starting to feel better.

best to everyone

sorry to hear of so many people having problems.I am having difficulty with trips to the bathroom btwn 20-25 daily,recently went to my local GI who did sigmoidscope of pouch could not see any pouchitis although did see minimal inflammation in rectal cuff area.I was prescribed canasa suppositories which made condition worse I have always tremendous urge to defecate especially when sitting does anyone have any suggestions? thank you pauln

I feel for you. For all of us that suffer with pain STILL after this surgery. I keep praying and hoping that with time and patience, something will turn up for good and something will work for me. I am to the point of getting this out of me and dealing with that for the rest of my life. I realize there will be ups and downs but I don't know if I can take it either.
I will tell you that it took a good 6 months to a year to get used to this new pouch. A very long time for me between bouts of pouchitis. It has not been easy and it's certainly been nothing but a lot of pain and burning. The gas kills me at times and this is when I break down and lose it.
As for the canasa suppositories, I have used them and find them to give me relief when I am struggling so badly.

Wishing everyone the best.

pauln-
I was going just like you for a while and ended up on a picc line for nutrition for a few months. That saved my life! I was on canasa suppositories for a bit and then went back to my GI doctor because (I slowed down in going) but still felt like I had UC. She did a sigmoidoscopy (I was put out for it, too much pain) and my anus was ulcerated. I was put back on steroidal suppositories twice a day and that has helped me out. I have one more barium enema test in Oct. so she can take a look at the entire system. Not sure what she is looking for.
Your symptoms seem to be a lot like mine were. Make an appt. w/GI.
fourgrubbs -The gas is what kills me, too. I can feel it building up! When I wake up in the morning I am a 90 year old walking.

Why can't we all just get a break from pain for a few days?!

Roberta

Well I finished the cipro 2 days ago, and the pain is coming back! I just spoke to my surgeon and told him Im seeing my GP thi afternoon, and he said to get another fortnights dosage of flagyl & cipro and see how we go. Im heading to see him next week, but he said he wont do a scope if the antibiotics are working. Its a very frustrating time for me. It affects my life in so many ways, from caring for my young children to being intimate with my husband...... I guess it could be worse...

Temples.
I am sorry for your pain and discomfort. I can empathize. My chronic pouchitis has affected svery aspect of my personal life and I think my husband's patience is running thin. It is our 24 year anniversary today and we are on our way to NY to see
my surgeon and get scoped....,not the way we should be spending our day. I will let you know my results. I know it could be worse but living with daily chronic pain is no picnic. Nope you feel better with the meds.

jeane -
I celebrated my 25th anniversary 3 weeks postop! Certainly wouldn't recommend it to anyone! LOL I hope you find the answers. I go for another barium enema tomorrow of the j pouch. They found UC/bleeding in my anus so I ended up on steroidal suppositories.
I am not sure this j pouch is such a cure for all!

Roberta

I have seen several people mention UC in anus. I was told I couldn't get UC anymore that it might be some type of inflamation but would not be UC. Told it was cuffitis but then when I said I thought I didn't have a cuff gastro said it does not specifiy type of inflamation. guess he was just going by location. Also mentioned solitary rectal syndrone. I am wandering if he was just grasping for straws. Now I am really confused. I really believe in the place he wks out of but just not sure about him now. My personal life has been affected more in the last 12yrs so I can understand what you are saying about that. We will be celebrating our 17th Anniversary. When we met I told him all about my condition but then I had never had pouchitis or so much problems with outer skin. Sometimes I wander if his daughter was not quadrapledgic even if wouldn't feel as guilty if he didn't stay with me. I do my best to not let it interfere with my life but both of you can relate to a lot of it is not in our control. So glad we have this site to correspond with people that do understand.

I know what I am about to tell you might seem unbelievable or even to good too be true,but here goes. I suffered terrible butt burn and pouchitis for 6 months after my take down.I tried every drug combination And over the counter remedies going,nothing worked except antibiotics. Then by chance my wife read or saw an article that explained how bile acid and enzymes from the gallbladder,liver,pancreas and other organs drain into the top of the small intestine just below the stomach.So after a lot of joint research,we found that statins such as simvasatin a drug prescribed by the GP or an over the counter natural statin (with less side effects) which I personally prefer , make a major difference to the acid production thus minimising massively irritation inside and outside of the body.I bought these plant sterols at my local Holland and Barrett store or if you have a vitamin world or good large health food store or lastly pharmacy.
For the first two weeks I took 3000 mg of sterols,which is way over the recommended dose, then I slowly reduced the amount to 2000mg per day which is what I take now. For the last 12 months I have suffered no pouchitis at all, the improvement in my quality of life is remarkable.I would recommend if you are going to try this to start this method after you have finished a course of antibiotics.good luck.
Let me know how you get on should you decide to try my method.best wishes Richard.

Richard,

Is there a name brand for the sterols you purchase over the counter or is this what you look for in the store?

Sterol is just the nature substance derived from certain plants. In the UK i buy mine from a large pharmacy called boots the same as walgreens in the USA. They tend to come in a hard tablet form or soft gelatine capsule,i take the capsules because the tablets tend to pass staight through me unless i crunch them first not particularly nice.
At the moment the small amount of people who have tried sterols have all benefited from them,So please let me know what happens.regards richard.

Thanku Richard! Im going to look into this! Im in Australia.. so the first thing I have to find out is if I can get it here. Ill keep you posted!

Hi there, i am a fellow young Aussie with a 12 yr old j pouch. I'm sorry u are going through all this, I wish there was some quick fix, we all do :/ but ur not alone! I haven't been through much of what you are but I do understand allot of ur frustrations and fears, i guess i just wanted to offer you my support, I'm happy to chat or try and answer any questions if I can, believe me I have many stories still lol. Hope u feel better, stay strong! X

http://www.facebook.com/#!/gro...12/?bookmark_t=group

Thanks Lou Lou. Hey everyone heres my IBD, Ostomy & JPouch support group. Please feel free to join!