Hi everyone! I had my takedown over a year ago, and since have felt awful. Sometimes I wish i never even went through with this surgery. Extreme gas build up, excessive bathroom use (20 plus) cramping, sharp shooting pain, ect. Ive been to doctors around the country and no one can pin point what is wrong with me. I do not have pouchitis, or IBS or anything anatomically wrong. My most recent doctor does not want to do a pouch reconstruction, so he decided to randomly give me Cipro and Flagyl just to see if they would help. These two drugs have always helped me in the past, and now are doing the same. My only problem is random constipation. Since I started taking these drugs I have not been able to use the bathroom and my stomach is extremely distended. The doctors have lowered my dosages, but it still does nothing. I ahve taken laxatives, and that helps, but I wind up spending the night in the bathroom. Have any of you experienced anything like this before? Advice? Sorry for so much detail, I'm so desperate, I feel like doctors think I'm crazy.

I am so sorry you are having such a difficult time. I don't have any concrete advice, but I sincerely hope and pray that you feel better soon. I know the feeling when you and even Doctors don't know what is wrong. Since it's been going on for over a year, I am assuming you have read previous posts and tried many different things. One thing comes to my mind is Cleveland Clinic. Have you tried seeing any doctors there?

Thank you so much for your prayers. And yes, my original doctors were from cleveland clinic.. surgery.. gi.. ect. Ive used the one in Florida and in Ohio. Thank you though(: I definitely appreciate it!

RakeD,

I'm 10 months post take down and feel like you do. They can't figure out what's causing my pain either. They think it's probably caused by scar tissue that doesn't show up on the Gross barium exam, just if it's blocking. Didn't show up on the CTscan a few months afterwards either BUT I had an incisional surgery after that scan. What test do they do to test for bacteril overgrowth - a culture taken from inside your pouch?

I was thinking of asking to go on Cipro to see if I might have pouchitis but after reading about your problems I'm going to wait until my surgeon does my first scope.

I don't think they think I'm crazy - yet, but am afraid that's coming soon.

Has anyone discussed motility or an IBS like pouch syndrome with you? I haven't brought that up yet.

Are you still taking pain medication? I still end up taking around 4 vicodins a day.

Sorry for all the questions, you were asking for advice and I'm asking you! I'm going to the doctor this week and if I find anything different out I'll post.

I hope you find out what the problem(s) is and start feeling better soon.

They thought it was scar tissue for me as well, but there was nothing they could do. They gave me steroid incisions in my stomach to"numb the pain" but i was certain it wasnt that kind of pain. At this point all doctors continue to say "its ibs" blahblah.. but IBS is treated based on symptoms... mine being pain and urgency. Anything that they have given me for urgency has not worked, and nothing has really worked for pain.

I'm 16, so I live with my mom and she doesn't understand the type of pain I'm in. I feel like I'm alone. When doctors prescribe narcotics, or othr pain killers she wont let me take them. She says they are highly addictive, so I'm not allowed. The only pain meds she lets me take are ibuprofen. That doesn't really help though.

Do you have like extreme stomach growling/ gurgling noises? I have that and it can be heard from feet away. It is painful.

Just like you, nothing showed up on any exams or scopes.
I didn't have any tests done for bacterial overgrowth. I think they do it based on trial and error.

Don't worry about any questions! We can be here for eachother. I feel like I'm going through this alone!

Let me know what the doctors find, I hope you feel better! (:

I understand why your mom doesn't want you to get addicted but you have to take a lot to get addicted. People that abuse pain medication take it to get high and that's higher dosages than we should take anyway. When I take it I don't get high, just rid of the abdominal pain. It doesn't help my other pains either. I have gone several days pain free and didn't take it and had no side effects. I'm a grandma, a young one, lol.

Ibruprofen, if taken in higher doses, like 800 mg may help but a lot of people say we shouldn't take NSADs, which includes ibruprofen, asprin, etc. All but tylenol which does nothing to help.

Hopefully you can talk to her again and explain the pain, tell her I said it's like labor pains and maybe she will understand.I had two children with no pain medications. I'm sure she is worried about you. Are you able to go to school?

I pretty much just eat a yogurt and probiotics for breakfast and maybe a few crackers for lunch. That way I can hold off the pain until late afternoon. That's when I take the pain medication. I wouldn't recommend a growing young lady like yourself to follow my diet. I gained a lot of weight from prednisone so still have weight to loose. I've lost a lot because food tastes weird or I'm not hungry. I usually eat a good dinner including V-8 or other juices to help me get in veggies and fruits. I still can't eat them raw.

My doctor's appt is tomorrow and if she figures anything out I'll let you know.

I'm back from the doctor. We decided to treat me for IPS, inflammatory pouch syndrome. Along with my UC I also had IBS so I'm going back on Dicyclomine 20MG 4 times a day. I think they have it in 10MG doses too. You treat IPS like IBS, so there are other medications to try as well. Since I already had leftover dicyclomine I'm trying it first. She said to try for 10-14 days and call her and let her know if it is or is not helping.

We are pretty sure it's not pouchitis or cuffitis. She said I could do a round of cipro or flaygl and I decided to do the anti-spasmotic first.

So that's what I'm trying now and hoping I will eventually get rid of the need for pain meds.

I found some good articles on it today, the following is the best I found:

http://www.lerner.ccf.org/path...hen2002AmJGastro.pdf

It is a good one, with a lot of doctor descriptions of testing but it might not hurt for you and your mom to read it, if she wants. It's written my Dr. Shen, and other doctors, at the Cleveland clinic who everybody talks about on here alot.

It might not be what's wrong with me or you but it's another thing to either eliminate or treat. She also says the scar tissue still could be a pain source, even if it wasn't showing a problem on that gross barium small bowel test.

I hope you had a good day and can relax tonight. I'm going to be a couch potato as I'm in pain and am tired too - as usual.

P.S.
Along with the anti-spasmotic I need to take metamucil as well for IPS.

Just one more fun fact....

I'm sorry I have been MIA , I've been trying to catch up on as much sleep as possible. My doctors were thinking it was IPS, but the antispasmatics weren't working.

Let me know if it works for you, i hope everything goes well! (:

I took a trip out to ohio to see Dr. Shen , and was not happy with the way I was treated there.

I tried to convince my mom to allow me to take pain medicine, but she still refuses. This year my problems have gotten so bad that I was pulled out of school and am homeschooling.

I dont want to live my life like this anymore. I want to be able to eventually go to college and live life like a normal person. I wish I had never gone through with this surgery and had jsut continued living with UC.

My diet is similar to that of yours, but I basically cannot eat during the day. If I do I'm in excruciating pain. I eat a light dinner and that is all most of the time. I know its not healthy, and doctors don't recommend it, but they dont go through this pain. They have no idea what we go through. I take boosts a lot to get vitamins, but I still feel unhealthy. I'm underweight and tall, so I just look emaciated.

Let me know how everything goes for you. I'm rooting for you to get better(: You are in my prayers and I hope it goes uphill from here!

Dear RakelD,

Are you using metamucil and did you take it the same time as the antispasmotics? There are several different kinds. Metamucil is helpful if you need to go and if you need to thicken, I don't know exactly why but that's what has been explained to me. Also instead of taking laxatives drink some grape juice, white or purple - that get's things going. If you stomach is extended - instead of being constipated could you be suffering a blockage or partial blockage?

Have they looked for strictures, abcesses, fistulas, etc.?

You say you are living with your mom and she won't let you take pain medication. I'm not trying to be nosey but is there someone else you can talk to about it, like your father, grandparents, aunts & uncles, minister, a friends mother, etc. You have to be depressed being in pain, not able to go to school and do normal things. I don't want to see you get too depressed.

I see why she doesn't want you to take pain medications long term but until they figure out what is wrong with you you need help. There is another medication that isn't as strong as vicodin called Tramadol. Have you been able to try that?

We are doing the same thing in eating lite all day to keep the pain away. Then I'm up several times a night unless I stay up late until I think I'm done going.

Are you taking probiotics? I'm taking VSL#3DS and knock on wood have not had pouchitis but I've been on antibiotics for abcesses so maybe I did and those took care of it.

I wish I could do more to help. Your mother wants the best for you and I know, from having a seriously ill child myself, she's having a hard time seeing you suffering. (My son had a surgery when he was 15 and all was fixed.)

We had surgeries and we are not all fixed yet. When they say it takes a year, year and a half up to 2 or 3 years to be completely recovered I get upset. I was told a year and the research I did before surgery said a year too. I just didn't realize how hard this year was going to be. The first birthday of my takedown is 12/29 and I don't think I'll be out of pain by that date.
Please let me know how you are doing. If all you want is for someone to listen PM me and no one else will see our discussion.

I'm going to try to sleep now, it's 2:30 a.m. where I live and you are probably at 3:30
a/m/I'm praying for you,

Yes I took metamucil at the same time as the antispasmotics. It didn't seem to help at all. Ive been through testing for blockages strictures, abcesses, fistulas ect. They have done exploratory surgery twice since my takedown.

There is no one else I could talk to about pain meds. I try to convince my mom, but she is too nervous about the addictive aspects of them. I know she is just looking out for me, but I am in so much pain. I've been on tramadol I believe intravenously and if it is what im thinking, I had an allergic reaction to it.

We do the exact same thing with our eating habits, but I am usually up all night in the bathroom. It is hard for me to get a straight nights sleep.

I'm taking culturelle probiotics right now, Ive been on them for as long as I can remember, I don't see them doing much, but the doctors say to stay on them even if I dont see any side effects.

I miss school, and seeing my friends. I hate being in Bed all day. The doctors say i should work out... but i dont see how they expect me to work out if i can barely move.

Hopefully what you are on now will fix you, so you can go on living a (semi) normal life (:

Thank you for everything!

RakeID,
I have been following your post, but really have nothing specific to offer, so I don't reply. At least know that I pray for you.
Couple of things came to my mind were a) can you try changing probiotics? If you insurance covers VSL#3DS, then get that. If not, some people had good results with Align. b) I know it would be hard in the situation you are but I thought I would mention - can you try yoga or meditation?
I hope you feel better soon.

I don't think tramadol is given through IV's, could you be thinking of demoral (I spelled that wrong).

Do you have an upcoming appt that your mom can go with you into the examination room? Maybe bringing up pain control in front of the doctor will help her understand how you need help. You've probably done that already.

Part of the problem is that we don't always "look sick". My husband looked at me the other day and said, are you in pain? That's the first time he's said something like that. I tell him when I'm in bad pain but not every day as I don't want to wine all the time. Maybe you should tell her more often how much pain you are in.

I'm praying for you and hope you are out of pain soon.

Hi Beucfree,
I will ask my mom about VSL#3DS, maybe that will help. I've never done yoga, so who knows, maybe it could help.
Thanks for the advice and well wishes I really appreciate it(:

You're right I'm thinking of torridol ( i think i spelled that wrong).

Because I'm underage, the my mom has to be in the examination room with me during all appointments, so she hears it all, she is just hesitant. My doctors always say narcotics and pain killers are my "last resorts" but what resort am I at now?

I complain a lot, which I think leads to my mom and rest of my family to think that I'm looking for attention, so when I'm quiet about it they leave me alone. Everyone thinks I'm the crazy one, and its gotten to the point that i cant even deny my crazyness because who wouldnt be if they were in chronic pain with no solution as to how to make it better and isolated all day.

Thank you so much for your prayers, I hope you feel better too.

Something someday will take the pain away, Im sure of it (: