im a 17 year old girl living in Singapore. i have been suffering from Irritable bowel disease since the age of 8. my doctor said that it might be Crohn's disease as i had a fistula before, however pathologist reports said that it is UC. hence, i went ahead with the j-pouch surgery in january 2004.

things were alright for me until last year around march when i began to experience pain and more frequency to the toilet. an endoscopy shows that my j-pouch had some inflammation, so i was put on flagyl. but it doesnt seem to get better. now i am on pentasa 500mg 3 times a day and two tablets of prednisolone (5mg per tab). does two tablets of prednisolone per day cause "moon face"? apparently my face is starting to bloat up.

the problem is when the attacks come, my lower abdomen will hurt real bad. sometimes going to the toilet helps to relieve it, but most of the time i cant get everything out. there seems to be some sort of constriction. due to that, i have to go a few times in an hour to try to force it out. sometimes it works, other times it doesnt. sometimes i have to roll about and hug a pillow tight for hours before it subsides. this is seriously affecting my sleep and lifestyle. when i feel this "constriction", i will experience either pain around my abdomen and backbone, or just a paralysed feeling from the left side of the back of my waist down to the left side of my thigh. is this normal?

i tried taking aloe vera gels and my condition improved quite a bit, but i realised that stress did play a part in aggravating my condition. plus the fact that my immune system is low due to prednisolone, hence i keep contracting stomach flu from the people around me. does diarhhoea aggravate my condition somehow?

sorry for the long post. i hope to receive some answers as im sick of being in this condition.

Hi JOL, Welcome to the group.

I'm so sorry that things are not going too well for you. I can fully sympathise as I'm going through a similar thing myself regarding the question over my original UC diagnosis. See this link:

http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/8931010412

I haven't been on Prednisone for 11 years but was on and off for the 20 years of UC before my j-pouch surgery and yes, just 10mg would give me moon face!

I know that you said you've tried Flagyl but it's possible that you may need to try another antibiotic such as Cipro, although I'm not sure if it's appropriate for the treatment of Crohns. Flagyl never really worked for me and used to make me feel worse rather than better. Cipro made me feel yuk too but it did get the pouchitis into remission. Once in remission I was able to stay there with probiotics (VSL#3) and that may be something worth trying if you can get into remission.

I can relate to the abdominal pain and cramps too and it's really debilitating when it affects you sleep and life style. Has your doctor put you on any antispasmodics? That might be something else worth asking about.

I can't really think of anything else at the moment but I'm sure there will be others along soon who will be able to offer advice.

I hope things improve for you soon.

Take care

Shell

hey, thanks alot for your help!

i have never tried cipro or any antispasmodics before. however, when i was still having UC/ crohn's disease, i did try an immunosuppressant drug called Immuran. im allergic to it though. it caused me to develop severe pancreatis and lots of rash over my body.

im seeing my doctor on the 7 march. im still on these two medications. apparently budesonide doesnt seem to make a difference as i have not taken it since i finished my dose a month ago. im still on pentasa and prednisolone.

is there any way to prevent "moon face"? like perhaps is there any food to avoid or something so as not to add on to the puffiness? is "moon face" caused by water retention? also, is there any food i should abstain to prevent these abdominal cramping and the increased frequency to the toilet?

does it mean one has to take medication for life even with a j-pouch surgery?

Hi JOL,
For me the only thing that got rid of the moon-face from Pred was weaning off it. I hate pred!
Only when I was on a short course (4 weeks) about 3 years later did I manage to take it without swelling like a blimp. Imuran worked well for me, but ruined my skin so badly I had to stop. My skin specialist worried I´d get skin cancer instead!

Make sure that your doctor checks for a stricture, and if s/he has slender fingers, have him or her use 2! Sometimes a stricture at the anastomosis site can cause the pouch to not empty, which causes the stool to remain and cause bacterial overgrowth and inflammation. Sometimes these can be missed because even though a scope might fit in the opening, the opening might still be too small for proper pouch function. If it is a stricture, a dilation is relatively simple and can sometimes be done inside the office, but in your case, they would probably want to do an exam under anesthesia and look at the pouch completely as well.

Yes, even 10 mgs a day can cause moon face unfortunately.

You might ask about Remicade treatment. It's used for both Crohn's and UC diagnosis right now.

Keep us updated and let us know how your doc visit goes! I hope you feel better soon.
Take care..Lori

You've gotten some excellent advice and I don't have much to add. I would have suggested Entocort (budesonide) instead of the prednisolone, but it seems that you have already tried it. However, I am not clear about how it was prescribed. If you were taking both prednisolone at the same time as the budesonide, I would not expect much change. The budesonide is just a topically acting steroid. You can take it orally or by enema and the systemic effects are supposed to be greatly reduced over drugs such as prednisolone and prednisone. The only way to get rid of the moon face is to taper off of the prednisolone. The idea is to replace it with the budesonide, so you don't have the side effects like moon face.

I also agree that you should be checked for an anal stricture. You may also have a partial obstruction from a stricture that is related to adhesions or Crohn's elsewhere that is causing your abdominal pain. Changing antibiotics could help if you have developed a sensitivity to Flagyl.

Jan

thanks so much guys for your advice. you guys have been a great source of help. really appreciate it

what is a dilation? sorry im absolutely clueless about this kind of thing as UC & Crohn's disease are quite rare here in Singapore, hence we do not have much discussion about it.

im not on any antibiotics since i stopped flagyl. the doctor kind of suspect it might be Crohn's disease cos flagyl didnt seem to work, but again the pathologist reports shows that it was just pouchitis. however the medication that the doctor is giving me now is that of when i was having UC/Crohn's. he put me on both budesonide and prednisolone, that was the reason why i taper off budesonide. it doesnt make a difference somewhat and i dont wish to be on so much medication. im really confused now.

the last blood test shows that my inflammation went down by alot, almost to the extent of remission. perhaps that was due to the fact i tried aloe vera for about a month prior to that and the fact that i was on holiday break. but ever since i started a part-time job as a telemarketeer, it sort of became worse as i kept contracting alot of virus from the people around me, such as flu, diarrhoea etc.

any advice on diet? i realised food does play a part in the frequency to the toilet and the cramping too...

Dilation is just a stretching of the anal area to break up any scar tissue and make sure the opening is working properly.

You might ask about Cipro as a treatment and/or a combination of Cipro and Flagyl. If pouchitis does not respond to antibiotics, some doctors will start the use of UC drugs to help control the inflammation. Something helped your inflammation, could be the aloe, could be the steroids.

I would avoid foods with a lot of sugar, and a lot of fat. Some people have problems with veggies, and some have NO problems. You'll have to try that and see.

You can try psyllium fiber (Metamucil wafers here in the states are great!), chia seed or Salba has helped some recently. Immodium (OTC) up to 8 per day and Lomotil (Rx) up to 8 per day can also help. As with any new food or supplement, add only one at a time, see how it works in you, then gradually increase amount, or add new things.

Keep us posted!
Lori