Has j pouch about 10 years ago. No problems until last dec. and got really sick with pouchitus. Terrible pain and going alot. Was out of work 5 weeks.
About a month ago started leaking anytime i got up to walk around i would start to leak and bad after i ate. I had it at night now. Never had much problem with leaking before. Its like i have lost control and can not hold it. Doc said i have pouchitus and am on cipro no pain like before but now control. I can deal with alot but not loosing control. Have been off 2 weeks now cant work if i can not control my bm movements. I feel so isolated cant really talk to anyone. There wonderful but dont understand. Feeling very lonely am really worried that the control is permenant and that is to much. Just need to feel like i am not alone. I wish support group was around here. Thanks for listening LYN

Is the cipro helping at all? How long have you been on it? It should be kicking in if you've been on it a couple of weeks. Some people find they need cipro and flagyl at the same time; if you check the pouchitis forum you'll find lots of useful tips and you can do a search as well.

Do bulking agents help at all?

So sorry; it is very hard to deal with that. Miserable, embarrassing, the whole lot. I hope things turn around for you soon.

Gin

Thanks for the kind words i have been on cipro for allmost 2 weeks. I do take this powder that i mix in cranberry juice 3 times a day and its helps with the bulking i have been on that for months. I think it helps 50% of the time. Its so hard not having anyone to talk to that understands and friends and family have been great but they really dont understand i just keep it to my self. I just want the control back thats all. One doctor tells me that i should think about permenent disability and i am 50 and i cant even imagine or can really even afford that. I am on short term dis now but only get 65% on my pay. Just so bummed and alone i feel. You are very sweet to write back.
Thank you

Frances,

I will pray for you tonight.

God Bless,
Markus

Thank you that is so sweet. just feel lost and just talking to doctors is not like talking to someone who knows what you are feeling or could tell you they have been there and what your feeling is ok.

Frances,

Unless you find a doctor with his colon ripped out, they have no idea what we experience. They will stare at you across their desk in the office and pretend like they know what we are experiencing. I have had my J Pouch for 20 yrs, and have had pouchitis at least 5 times. I know what you are going through, and I will keep you in my prayers tonight.

God Bless,
Markus

Frances,
They say that peptobismol helps a lot for the pouchitis, kiegel exercises help for the control if you are not dealing with full watery stools (helps reinforce your pelvic floor and give you 'better' control)...and hopfully talking to us helps with the isolation...I know how hard the leakage is and how embarassing and painfully uncomfortable the incontenence can be...you have to work those poor anal sphincter muscles to keep them storng so that they can hold-on better...and you have to wash and dry regularly after each 'go' to prevent buttburn...I know that none of this is an answer to your pain but at least it can help to keep you comfortable until the pouchitis is under control.
Sharon

Frances, so sorry for your problems. Doctors (in particular surgeons), really do not understand these "side effects" of the jpouch. Umm, very few coloned people can get their head around it.

I see you live in Ohio - can you make it to the Cleveland Clinic? They are very knowledgable in jpouch issues, unlike just about any other GI doc or surgeon (in my experience). They actually want to help you.

I agree with the Pepto Bismol suggestion - give it a try, in the meanwhile.

Best wishes.

This sounds like more than pouchitis. I agree with Nancy Ann and if I were you I would head to the Cleveland Clinic and see Dr. Bo Shen. He's an expert GI on jpouches.

Sue

I cant thank you enough for talking to me. Not being able to talk to anyone that has gone through it is very lonely. I will take all your suggestions. My regular doctor said i should look into permenent disability but i cant afford half my pay i have bills and like to eat lol. I have an appt with my GI man on monday and have been with him for over 15 years and love him but i really think he does not know what to do and said if this does not work that maybe i should get another opinion. That really scares me. I would go to the cleveland clinic but i think my worst fear is that the j pouch is not working anymore and that they will have to give me the pouch and that was the longest 3month of my life and i cant live like that. I pray for the people who do i am just not that brave i guess. I am so overwhelmed about loosing my job and no one will hire me i would not hire me i am just being honest. ARe any of you on disability/
Thank you so much for taking the time to write to me. I have never felt so low before and im just so scared.

Frances - you can get a consult at the Cleveland Clinic. What you end up doing with the information is YOUR decision. I have night time bm's every night, some full blown, some not, for at least 3 years now. I don't have pouchitis, I have done Kegals, I have taken the Pepto, I eat metamucil wafers, and still I have it. I am 59...and I just accept that is how my body is. Not fun, but I deal with it. I wear pads 24/7. I do know that if I had to go back to the bag, I could and would... I wouldn't love it, but I could do it. And who knows - your problem may be something really simple!!! Call the CC and get an appointment...you will then have some options open up for you. Where in Ohio do you live? I am near Cincinnati....

Frances - sorry you're having such a rough time. I can relate. if I come off of antibiotics for just a few days I'm in bad shape. The worst was when I wound up in the hospital in August and did not eat for nearly a week. I couldn't help but chuckle at your comment that you like to eat. I don't want my jpouch anymore. I never thought I'd hear myself say that because I swore I'd never go back to a bag but for me its a healthier decision as I don't want to stay on antibiotics and drugs long term and even then they don't always help. When I had my temporary ileo I had no pain and was free to do pretty much anything. Pouchitis is too much like UC and in some ways worse. For the record I'm going to see Dr. Shen in Cleveland at the end of the month just to be certain that the perm ileo would cure me. Both my doctors strongly suggested the consult. If you are in Ohio it would seem like a no brainer.

Hi,

I'm on Long Term Disability insurance. I know it's not as much as you make but it's better than nothing or getting fired for missing too much work. You won't get unemployment insurance if fired for cause.

Hopefully you will get over this infection and the problems accomaning it. If you don't and your doctor is saying you should go on long term disability then you should. He knows that he has to send records and fill out forms for the long term disability insurance company. Actually you get the forms, he fills out his part, you fill out your part and sign medical waivers so they can get your medical records. In any event, there is red tape but insurance companies are easier to obtain disability insurance from than the social security administration. That would be for permanent disability.

I just talked to my claims manager yesterday and she said we would revist this in 6 months. I can also work part-time and receive prorated benefits. Currently that appears to be unlikely, in my case.

Ask your GI for a referral to the Cleveland Clinic so you can get in there faster. He won't mind referring you for a second opinion if he's a good doctor. I asked my GI to refer me to the Mayo clinic years ago and he did. They confirmed his diagnosis and treatment plan. Plus I was sure it wasn't Crohns.

I know how you feel about being isolated. If is wasn't for this group's help I don't know what I would have done the last 9 months.

Please let us know how you are doing.

Frances, I know how isolated you feel. If it wasn't for this group's support I don't know how I would have made it the last 9 months.

I'm on long term disability not permanent disability. If you don't get better and have long term disability insurance please listen to you doctor and go for it. If you have any questions please let me know. If you were to get fired for missing work then you couldn't get unemployment insurance so disability is better. It's not permanent it's long term. If your doctor is suggesting it then he will fill out the insurance claim forms so that you'll receive it.

Ask you GI to refer you to the Cleveland Clinic so hopefully you will get in sooner than later. A good doctor doesn't mind referring patients for a 2nd opinion or to a specialist. He wants you to get better.

Please let us know how you are doing. We care.

I dont know how to thank everyone that has talked to me. Feeling isolated is a terrible feeling not wanting to talk to anyone anymore because they want to understand but they cant. But they are wonderful and i am lucky to have them.
I had my J Pouch about 12 years ago after dealing with UC for 5 years and in and out of the hospital. When i had the bad it was horrible i would not want people to hug me it just made me feel less of a women. I know its in my head but its truly how i felt. I went to the bathroom about 10times a day for years and it was part of my life and people forgot about it because it was my life and i did not hurt anymore and was not in the hospital. I had to be hospitalized one time with a bowl upstruction from the scare tissue but nothing for over 10 years.

Than last dec i started to have pain and pressure and had to go more about 20 times a day. It was like UC but worse. My GI put me on cipro twice and i think its called entacort its a steroid and then the powder to bulk it up.
Was out of work on short term for 5weeks.
I felt better hate steroids but felt better but when i look back on it not 10% like i was before when he said after the first scope it was severe poutchitus.

Than i did not have the pain and pressure i just lost control of my BM. I have always where a paid but not like this huge one. The lose of control was all the time and worse at night and did not know it happened until i got up to use the restroom. My husband has been great but i did not want to sleep in the same bed to much for me for him to see.
I am on cipro 500 to times a day and the bulkng medicine and my reg doctor put me on something for my anxiety becasue it was through the roof. It seems to be 50% better now not leaking all the time and the nights area not as bad. Now i have a yeast infection from the cipro.
I am going back to work on 11/01 and am so scared.
My work has been great but if i where to go on LTD i would not loose my job but they woould put me someone when i came back that they knew i could not do. My reg doctor said i should look into permenent disability but i dont know anything about how it works.
sorry to go on and on but you dont know how much it means to finally have someone that understands.
I dont feel so alone and that feeling is terrrible and feeling so hopeless scares me so.
I see my reg doctor today and my GI on monday.
I dont know how to thank you all