HELP! I'm new here. I am a stay at home mom (did teach 1st grade for 6 yrs). I have a wonderful husband and 20 month yr old son. I was diagnosed with UC nearly 13 yrs ago. I would fare every 2 yrs and then finally every yr. Everytime was a 2 to 3 wk hospital stay. I have been on all the normal meds: predisone, imuran, cyclsporan(?), and my last straw was the remicade. I had no results so I finally gave in and had the surgery.
I had it done in Feb at Vanderbilt. The first surgery was very difficult for me..fevers, NG tube, dehydrated, all the normal stuff I guess. I developled a leak and that put me with the bag for 12 wks. I have suffered the most emtionally, I think. I guess everyone here knows what I mean. So I'll get on with it. I had my TD and it went very smoothly until I developed an abcess. This was the most pain that I have ever been thru. It was on my right side, so thats where they jabbed the drain tube in.
So, now that I am nearly 2 months after the TD I am still having severe rectal pain and I am still having the spasms. I go about 10 times a day. By the end of last week I began having severe pain inside of my rectum. It is a constant pain, it feels like a knife is being turned around. I thought it must be a combination of hemoroids and BB. So I used the OTC meds for hemorids and the calmoseptine. I called the doc on Monday and he thinks that it is pouchitis. He hasn't seen me yet but went ahead and called in Cypro. He wanted me to give it a day or 2 and call back. He'll see me on Monday if the problem is not better. My main question is, does this sound like pouchitis? I'm not questioning him just new at all of this. I knew my body with UC and I haven't quite figured the pouch thing out. If it is pouchitis, is it a bad thing that I have developed it so early? Do you think that I will be one of the ones with chronic pouchitis? I hate to be negative but like alot of people here, it just seems that all the worst has happened. I haven't had a pain free day since my flare began in August of '06. I still have the night leakage pretty bad so my nurse prescribed Lomtil. Between the pain, the leakage, and still not being able to sleep I am at my wites end.
Can anyone relate to my situation? Thanks for being patient with me and listening to me ramble on.
PS.I am so excited about this site!

I'm thinking you may want to check for a fissure as well. The severe rectal pain can be a symptom of a fissure. A fissure is often treated with nitroglycerin ointment.

If it is pouchitis - no it's not necessarily a bad thing that you've developed it so soon after surgery. And it doesn't necessarily mean chronic pouchitis either. I believe that pouchitis can only be definatively diagnosed by scoping. Often people have a bout of pouchitis and then no more. It's usually quite easy to treat (even though it's so easy to go to the dark side with your thoughts....)

Going 10 times a day is actually quite good for only a couple of months past takedown. The spasming and nighttime leakage should get better with time. This process can take quite a while - up to a year or more. But most everyone gets to the other side. You might want to also try loperamide/imodium. It acts a bit differently than lomotil. And metamucil wafers really help to bulk things up.

And yes, most people can relate to your situation. Most of us go through some or all of what you are going through. But it does get better. Try measuring your improvements week to week rather than day to day. Are you doing better than you were a week ago? Two weeks ago? It IS often two steps forward one step backward. But you're still moving forward.

Welcome to the site.

kathy

Hi and welcome to the site!
I really don't know if the rectal pain means definitely pouchitis. It's a shame the doc didn't scope you before giving you antibiotics (I'm not a fan of frequent courses of antibiotics, but I suppose you're doc is the one with the medical degree, not me ). I've had rectal pain too, but had no sign of pouchitis or cuffitis. I think it could be hemorroids, and if you have strained or been on the toilet a lot and got hemorroids, maybe that's causing your pain too. I think you should ask for a scope anyway so you can really find out what's happening. A sharp pain like a knife sounds like a fissure to me. My pains are the intense, but duller kind. Does it feel like your pains are surface pains or deep in the tissue/in the muscle?

Thanks for the advice. I put a call into my nurse this morning for her to get back with me. I have been on antibotics for 2 days now and I see alittle improvement. (very little) I feel like the pain is surface pains but I can't tell enough about inside the rectum. I just know that it is very painful and I need some relief. It hurts all the time and not just when I go to the bathroom. I have tried baths, heating pad, and ice. The baths feel nice but I can't live there. I have been straining more because I feel that I must strain sometimes to get my bladder to empty. I can't feel there as well as I could so I seem strain more. I guess its from all the tissue damage (another thing to address with them)

I have been on imodium ever since the first surgery. I have not seen any improvements or differences in the nighttime leakage. I usally take around 4 throughout the day and another before night. I started the generic for mylan and I haven't leaked as much. I know that I will have to give this some time. I bought the wafers, need to give them a try.

I think that I'll insist to seeing the doc on monday. I hate to start this out with something wrong and not knowing exactly what it is.

Also can someone explain what a fissure is. Does it eventually get better or do you have to treat it?

A fissure is a tear in the skin of the anal canal and is ususally caused by straining at hard stool. However it can also occur with frequent diarrhea and straining. It causes severe pain during a bowel movement. This pain causes painful spasms of the rectal sphincters, which can ache for quite some time after the spasms stop. The first line of treatment is sitz baths, 2-3 times a day, as hot as you can tolerate. Do not use soap. After a bowel movement, clean yourself with toilet paper moistened with plain water (no rubbing) or use a squirt bottle. Just pat dry gently. If this does not help, you may need topical anesthetics or ointment that improves blood flow, such as nitroglycerine or nifedipine. If they are large, fissures can take many weeks to heal, sometimes much longer.

Even if you do not have pouchitis, the antibiotics may help by helping to cut down on the bowel movements, particularly if you have bacterial overgrowth. Probiotics may help keep this in check after you have finished the antibiotic.

Jan

Thanks again for the help. You have described my pain with the fissure. I have a stupid question what exactly is in a sitz bath? I will look for them at the drugstore.

No questions are stupid - ask whatever you like . The others will explain sitz baths - not something I know a lot about other than from reading posts here. Lots of things you use in the US that we just can't get here - at least, not that we get told we can get!

A sitz bath is just where you sit in a tub of warm/hot water. You can just sit in your bathtub. But, to save water and time, you can buy a portable sitz bath at a drug store.

Here is a link to some examples:
http://www.target.com/gp/search.html/601-7664894-144811...ref=tgt_adv_XSGT0812

Jan

Thanks again for the advice. This site is such a lifesaver! I am been on the antibotics for 3 days now and I am not seeing any improvement. I called my nurse back yesterday, she returned my call this morning. They called in me hydrocortisone suppositories and the lidocaine jelly. If this doesn't do anything you would think that they would see me and do an exam. Please say a special prayer that this works. I really am in alot of pain. She also got me alittle bit stronger hydro to take for pain. Right now nothing is really making a difference so maybe tomorrow will be a different story. Thanks again for all of the support.

Hope that everyone has a great weekend!
jessica