It's been 15 months since my take down. Overall I feel fine. Unmotivated and tired at times, but overall good. A couple of weeks ago I ate a lot of pumpkins seeds (yes-that was dumb but I was really craving salt) and drank a lot of Gatorade. I noticed some red in my stool and had some painful bowel movements. And of course, the butt burn.

Since I've moved out of state after my surgeon, I went to see a new GI doctor because I was paranoid about pouchitis and wanted to get a scope. He didn't examine me or do any tests. He said I had internal hemorrhoids caused by diarrhea. (I think he got the butt burn confused with hemorrhoids since I told him I use Tucks pads for that.) I asked him to do a hemocult blood test and he said that it wasn't necessary that my blood work would show it and the hemorrhoids would show the blood. I asked him about the scope and he said to wait 6-8 weeks until the hemorrhoids cleared up. Then he told me to stay away from fiber. I said are you serious - I'd have all diarrheas with no binding foods. He said I mean nuts and stuff. I'm thinking then why didn't you say that.

He gave me a script for a $120 topical hemorrhoid cream. When the pharmacist told me the price I said no way. There are over the counter stuff for that for $10. And... I didn't think I had hemorrhoids. I had UC for 7 years before surgery and never did they say I had hemorrhoids. I thought the redness probably was from the Gatorade and the cramping from the pumpkin seeds. I did want the scope just to be sure it wasn't anything else and to make sure everything was ok after the surgery. Anyone know a good GI doctor in Northwest Indiana?

Now I don't want to see any doctor. It's such a personal thing, I had a hard enough time getting the guts to go see one doctor, now I don't want to see any. He obviously knows nothing about jpouches or what we go through. I really wish my surgeon wasn't on the other side of the country. I trusted him and he really knew his stuff.

I hate drugs and am so happy that after surgery I don't have to take the terrible horrible prednisone. I really want all of this to be behind me.

Three days ago I felt better than ever. Then yesterday and today I've had gas, bloating, tenderness in my lower left abdomen below my belly button, painful bowel movements but only 5-6 a day. I also get occasional headaches, nausea and throw up. Is that normal??

My husband has been so great through recovering from surgery but I think he's sick of hearing about my bowel movements.

So I ask, is it better to be paranoid and ask the doctor about every little pain, bowel problem or buck it up shut up and try to live a normal life? I'm just so paranoid about getting pouchitis I freak out about every little thing. I don't want to have any ailment that requires drugs. And of course I want to be healthy-treatment free for at least the next 5 years so I can get good insurance. At the same time to don't want to ignore anything just for better insurance rates.

Sorry to vent. I just need to talk to someone that understands and has been there.

Thanks everyone for all your posts. They have helped a lot through these months.

I'm not sure this is the greatest advice (particularly since I am a nurse), but after practically living at the doctor's office for about a year before and after my surgery, I tend to have a wait and see approach. I just got sick of having frequent contact with my docs. I look up my symptoms on reputable internet sites and if they don't resolve with conservative self treatment, then I call my doc. Most of the time, watchful waiting is perfectly safe. If you are having severe pain, serious bleeding, high fever, dizziness, or similar symptoms of something serious, then it's time to see the doc sooner rather than later.

Jan

From your current symptoms, I wonder if you've got a partial obstruction.

Hi (gutless) Wondergirl, You certainly do need a new GI doc. If Toledo isn't out of the question, we have a great group here that knows what a J-Pouch is. Two other groups too, at least, but I don't know them well. But I'm sure there is a good doc between here and NW Indiana that deals with J-pouch patients that are good docs.

Hemorroids! Ugh that's nuts. That's what some people tried to tell me right after surgery. No way. People just don't know when they haven't encounter a case like us. After months of trials, I found that Calmoseptine was the answer. I buy it by the case at the K-Mart pharmacy. Tube or jar. And I always have it with me. If I don't - butt burn, welcome back. Over the counter but I have to order because for some dumb reason they don't keep it on the shelf.

And it does sound like you have the beginning of an obstruction or partial obstruction. DON'T eat solids until it clears. I suggest; sip hot tea or something, put a hot pad on your belly and relax relax relax until it passes. Some J-Pouch patients find that walking moves the obstruction along but that doesn't work for me.

Good luck and keep us posted. If we can help at all - just ask.

I wish you could travel to Ann Arbor next weekend for our first Michigan J-Pouch support group gathering.

Whether or not the current condition requires medical treatment, I agree with Peggy that you do need to find a new doctor you can trust. (Good Lord, where would we be without our doctors?!--eventually there's bound to be something.) Even though he's clear across the country, you could start by asking your surgeon if he knows anyone--or knows anyone who knows anyone--he could recommend in your area.

Thank you everyone for your input. I value all of them.

Jan - I love the wait and see approach. I've been waiting on the sidelines waiting for the other shoe to drop - and trying to catch it first. I should just relax. My dear friends that love me get me paranoid and tell me any time I have a little pain or something that I should go see a doctor. Then if I am not feeling well later, they say why didn't you go to a doctor. So when I did - nightmare. However, thanks to this site, I've learned that many things are common among jpouchers and are not urgent medical matters (and great solutions like Calmoseptine). I wish nobody had to go through any of this but since there are I'm glad I can communicate with all of you. It beats unnecessary trips to the doctor.

And I agree with Peggy and Connie, I do need a new GI guy. Just so that if, God forbid, I have real complications I have a good person to go to so I don't have to go through wrong diagnoses again like, hemorroids.

Mike, thanks for bringing up partial obstructions. I've been so paranoid that I could get pouchitis that I didn't think about it being anything else. I'll do some research about that.

Connie, you said, "where would we be without our doctors?!--". Well if that were up to GI doctors, for my UC I'd still be taking prednisone, immune suppressors and other harmful drugs which would probably destroy my kidneys and liver and kill me(like what happened to my friend's uncle). I have a very low trust for doctors that are script happy. When I told my GI guy that I was going to have the surgery, he was so sad. He tried everything to steer me away, ie. more drug ideas, and looked so sad when he didn't convince me not to do it. To me it was a no-brainer. Freedom from my diseased colon. Life without prednisone which made me nuts. My health was on a very downhill course anyway, why not try surgery while I'm still youngish to recover well. And most of all to have a better healthier gutless life to live.

Surgeons - bring it on - thanks for saving my life, but doctors that prescribe drugs for a living... don't like to go there. I know what you were saying and you are right, I just had to get that out. The keyword you said is 'trust'. I'll have to do some digging. And if I can't find one local, I'll have to try Peggy's doctor in Toledo.

Obviously, as you have seen, it depends on the doctor. I like to think that after awhile you develop a nose for the bad ones. We've had one really bad one (I'd still like to see lose his license), a couple of mediocre ones, and some really great ones. Our second GI recommended surgery almost immediately--after first hitting it hard with medical therapy that failed. He is my hero. As Jan said, it helps to do some research yourself. When in doubt, get a second opinion. And even a third. If something clearly is wrong and nobody's identifying or addressing it effectively, sometimes you have to become a relentless PIA until someone does. I used to feel bad about that, but I'm getting over it--too many times when it turned out something WAS wrong and/or COULD be treated more effectively.

"relentless PIA" - I like that!

I'm sure you have a lot of stories about the doc you'd like to see lose his license. I'm very sorry you had to go through that ordeal. I hope you raised his/her incompetence to someone of authority - it is so easy to let things go but sadly, that person is probably doing the same thing to somebody else. I'm not one to want somebody to lose their livelihood but if they are not acting ethically they are hurting other peoples livelihood and quality of life, hence they should lose their livelihood. There is a site (I'm sure many others) http://ratemds.com/ where you can rate doctors. You may want to consider putting in an entry for that doctor so others will know your experience.