Hi Niki,

We are definitely 2 peas in a pod here. I've had that awful "tailbone" pain since my takedown surgery & J-Pouch creation in 2000. I've been checked out a million times but only one Dr seemed to make any sense of it for me. She said when you're under anesthesia & all the other stuff they use for this surgery, they are in through your abdomen & anus and with all the pressure, the tailbone becomes somewhat pliable and possibly somewhat mis-shapen (although, it shows up A-OK in X-rays for me). If I sit for long periods, or sometimes short periods the wrong way, or sit too long on the potty, I'm MISERABLE!!! If I have to be in the car for a long period of time, I use a heating pad.... My heating pad is my best friend I'm a chronic pouchitiser. I'm taking Cipro right now but it only seems to half kill me. I may be starting remicade soon also. I've been feeling quite awful lately and I'm willing to try something new. I hope you feel better soon.

Margie

Niki
Maybe you could try another antibiotic? I take Levaquin with no side effects. Are you drinking alcohol with the Flagyl? That could make you vomit...Have you thought about probiotics? VSL#3 DS is sometimes covered by Ins.
Feel better soon.

Hi BarbieG,
i have tried vsl#3..and i do not drink alcohol. the flagyl makes me nauseated as a side effect. this time around i am not feeling as sick from it tho- as long as i take it with a big meal im okay this time.
i dont know if it is because of remicade or flagyl but the aching in my back seems to have improved a bit....
but i still strain so much to go to the bathroom and im always going ..and my muscles are spasming. now my doctor is going to see if i need a dialation on wed. so hopefully that helps and hopefully does not hurt too much.
im sort of annoyed that i asked my surgeon and G.P. if i could have a stricture and they said no...now my G.I. says "oh ya, sounds like a stricture" *rolling my eyes*

I don't get it...your surgeon said you couldn't have a stricture without checking for one????

Jan

pretty much. he just looked at the fistula from the outside, and he sort of felt a tiny bit around the rectum and said it seemed soft. my G.I. even told me i probably have a narrowing because of scar tissue from the fistula i have healing up...that is exactly what i asked my surgeon and he dismissed it. he said i just should not strain (i was so frustrated because i have a pouch for years and then start straining-obviously something's wrong). i feel like he was not even listening to me...i told him advil was not helping and then 5 minutes later he told me to take lots of advil. oh well..

Sounds like your GI is your better ally in this respect. No point going to someone who does not listen to you...unless of course, you are in need of surgery.

Jan

i have had my pouch for over four years, i think, and just started taking methotrexate for joint pain. it's a low dose to start, and only seems to help for a day or two a week. but the thing is, i have the same rollercoaster you do as far as straining, and then, when i try to correct it, lots of problematic diarrhea. i think the methotrexate is helping make my bowel movements more solid, but there is something in the passage that causes a problem. my pain begins at my stoma site, and extends upward to just below my ribs. i either strain, and feel like i'm not emptying completely, or when i eat or drink something to help, go every ten minutes, completely liquid. heating pad and hot baths are my friend. i can't find a happy medium as far as diet is concerned, and my skin is very very sore, no matter what i do. still, i think this all feels like the medication is healing something, and another something is awry. puzzling. i'll keep abreast of your situation, and hope you solve this!
ellen

well, my g.i. looked at my jpouch in a scope and it looks great (thanks to remicade i think) so he now thinks the reason i have to strain is because chronic fissures are causing the muscles to tense up once i start to push...and they will not relax so that i can let out stool. so i can only let out small amounts and the more solid it is, the more i have to push, and the more the muscles tense up...now my sphincter muscles are just spasming all the time. it has become very painful....we are treating with nitro paste on fissures but it is not helping after a week...i was putting it on twice a day and now increasing that to 3.

i hear ya about sore skin...i also cannot find the happy medium for eating .....if it is liquid i can get it out easier but then so much burning and running to the bathroom....

wow. i was just reading over my old post here and this same problem is still going on........i still have aching pain on the right side ...it goes away when i have diarrhea and crohn's flare up...and then i get remicade and i feel great, except the aching comes back until the remicade wears off again....it's such a rollercoaster. i just got my remicade last monday and this time the pain is more intense and constant. now i really don't believe the g.i.'s theory that a fissure is causing muscle spasms and pain- this is not just muscle spasms it is a constant ache. i really believe now that all along i have had an abcess. i can't believe i haven't been sent for an mri since i started complaining about this pain in march. everyone says be patient and the fissure will heal....i don't get it tho if it is just a fissure then why doesn't it hurt when i have diarrhea? it only hurts when my stools are normal. i thought acidic stool and going to the bathroom constantly would irritate a fissure too....it just doesn't make sense. im going to insist on an mri. i have been up since 4am because it hurts too much to sleep. i had an abcess very close to where this pain is...it was drained in december last year...it turned into a fistula and i had a seton put in in february...i wonder if there is still a little pocket of infection they missed. anyways, that is the update. moral of the story- i should have insisted on tests earlier and made sure the doctors realized how much pain i have really been in...i don't think they get how much pain i am in. funny thing too, back in march my g.i. was on holidays and all of august he has been on holidays too....just when i need him...