Urgent help needed please!!

I´ve had my J-pouch since 1999 and I´ve had pouchitis a number of times during the years! But i´ve always been able to get rid of it with either flagyl or cipro!

But now I´ve had a severe pouchitis which didn´t react to either flagyl or cipro and the biosy showed it was a virus causing it instead of the usual bacterial infection...
It´s called cytemegalo virus, and is wellknowned to AIDS patients or other patients with immunodepressive illnesses! And it´s seen in UC patients when they´ve had major ammounts of prednisone! But my surgeon have never seen it in pouch patients!!!
So has anyone ever heard of it or suffered from pouchitis due to this virus?
I´ve been on an antiviral drug (valcyte) for 21 days! (Due to major sideeffects you can only take the tablets for the prescribed 21 days) and now the 21 days have passed and the pouchitis is back!!! And my surgeon can´t find any other option but to remove my pouch and give me a permanent ileostomi!!! AND I SIMPLY CAN´T DO THAT!!!!!!

I really hope someone can help me, as Denmark is a very small country and we´re not as far ahead medical or surgical wise as you are in the States or Canada or Australia!
So please please help....

Greetings,
Lotte from Denmark

Hi Lotte,
I did a quick search and found that a treatment that had positive results is gancyclovir for cytomegolovirus and is documented in this link:

http://www.ingentaconnect.com/content/bsc/ajg/1998/00000093/00000002/art00068

Maybe if the first treatment didn't work, another could be tried? I hope others will be along for more suggestions for you. Try to stay positive!
Elise

Hi Elise!
Thx for ur quick reply!
Gancyclovir is the treatment I´ve already had (overhere the tablets are called valcyte!) and at the moment my surgeon wont give me another go at it since it hasn´t really worked! (too many sideeffects!)
But after all my searching on the internet I´ve found it´s obviously the only treatment for the virus..?!
But I still hope to get in contact with someone having the virus as it seems it´s quite rare for pouch patients!?
But thanks alot for ur advice ;-)
Lotte

The only thing I noticed different from what has already been said here is from the Cleveland Clinic site. They indicate the drug (valcyte) is usually delivered via IV to fight this virus. I know sometimes the delivery of the drug does make a difference in its effectiveness. Not sure about this one - but it's a thought:

http://www.clevelandclinic.org/health/health-info/docs/...?index=9972&src=news

There are a few other related drugs, but with similar toxicity and more limited effectiveness. They are noted in this recent abstract:
http://www.ncbi.nlm.nih.gov/pubmed/18246516?ordinalpos=...anel.Pubmed_RVDocSum

Valganciclovir may be an option, but it is basically the same (turns into gancyclovir in the body). But, you never know, it might make the difference.
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a605021.html

Foscarnet works differently, but is also toxic. It can also be used in conjunction with gancyclovir or valganciclovir. It's use for GI CMV infections is not as well established as for eye infections.
http://www.drugs.com/pro/foscarnet.html

The treatment for CMV colitis should be the same as for pouchitis.
http://www.emedicine.com/MED/topic505.htm

Hope this helps.

Jan

Hi ElmerFudd! Thx for ur response, and for the advice! I don´t know either whether it makes much difference taking this medication orally or IV! But roaming the Net made me realise that it only helps between 75-90%... and I might just be during the last 10-25% it doesn´t help who knows.....

And Jan! Thx alot for answering! To be honest I had hoped you´d answer ;-)
I´ve read your advice to others, and it´s always so brilliant! (Makes me wonder whether your a doctor or a nurse??) I love the way you always use links in ur answers and I´ve read several of your links on pouchitis! In one of the links one of the doctors referred to two different articles regarding CMV and pouchitis published in Dis colon rectum and AM J Gastroenterol! I went to their homepages but couldn´t find the articles :-( But the article also mentioned VSL#3 and I´m actually going to try that to see if it is any good!

I´m going to see my surgeon again on tuesday for another endoscopy, and I´ll read your links and have a chat with him regarding them!
Thx again for your advice!

Lotte

Hi Lotte,

Just wanted to wish you good luck for your appointment on Tuesday.

You've hit the nail on the head with our Jan. She's our resident medical adviser and a retired RN. She is the most knowledgeable person I know and lots of us have been able to use her excellent advice when talking to our doctors. If she doesn't know something she will research it for us. Nothing is ever too much trouble and we are very lucky to have her.

Take care and keep us posted.

Shell

Hi Lotte

Hope it goes well for you on Tuesday - Make sure you stand your ground with your surgeon!

Shell, I second what you said about Jan, she's one-in-a-million, and you're not bad yourself!

David.

Hi Shell and Dyvid!
Thx alot for ur good wishes for my appointment for tomorrow! That´s so sweet of you :-)

And Shell, I just realised you live in Jersey! I´ve lived and worked in Guernsey a few years ago... And I miss it like crazy :-( Although I´m danish and I´ve lived most of my life here, I feel really homesick for Guernsey ;-) Weird! "You can take a woman away from the island but you can´t take the island away from the woman" (or something like that i think it goes )Oh your spring must be well ahead overthere by now? We still have a bit of frost which makes the jointpains quite bad! Wish I was back in Guernsey ;-)

Lotte