Update: from Jilly & Life is soooo Bad

Jilly-

I am glad to hear you are doing well but just wanted to warn you that the combination of antibiotics (in slightly higher dosages of cipro) and 9 mg Entocort, taken over a long period of time (7 months) led me to have to skin issues due to the destruction of skin bacteria combined with suppression of the immune system. The result was yeast infections, warts and hemangiomas which all hit me simultaneously. This was after taking Entocort 9 mg with no reduction in dosage for a period of about 7 months. There is no doubt that it helped me a lot as well, but just wanted you to be aware you can ride that gravy train for so long and have similar issues. Ideally, they probably will not keep you on Entocort and antibiotics for that long, and will try to reduce one or the other. Talk to your prescribing Doc about these issues and good luck.

Jilly,

That's FANTASTIC news! Dr. M. gets rave reviews; I'm glad you went to see her and now have some options.

Hugs to you,

Sue

So happy for you Jilly.

Made my day Jilly! While NO ONE wants to take a bucketful of medications every day, if it makes you feel like a normal human again, I think it is a very reasonable approach. First order of business, get the train back on the track. Next order of business, see what you can reduce, eliminate, etc., and still feel human.

What a bonus it must of been to find out that surgery was not on the table, at least not yet.

Never in my wildest dreams did I think I would be taking biologics a decade after my colectomy. But, compared to walking with a cane, not sleeping, and missing out on life, it was a no-brainer!

I think we tend to think that we have tried everything, when sometimes it is just a new set of eyes is all that is needed. Like Felix and his bag of tricks!

Jan

Jilly,

Good deal, you did what you had to do, keep it up, stay on top of it, yaay;-)

MK

Congratulations Jilly! It sounds like she knows what to do and how fortunate you are to have such a terrific doctor to work with.

Thanks for the update

Jilly,
I so happy for you. You have endured so much pain for so many years and finally are getting a break. I can relate to your misery and pray that you will continue to respond with this regimen. The leaking can drive you crazy and woohoo, no more panty liners! Please keep us posted.

Jilly

So pleased to hear you've finally found some relief. You've had a long struggle.

Hopefully this will be a manageable long term soltion for you.

Wishing you all the best.

Lew

(I kind of hate to say this, as I don't want to jinx anything.)

I remember somebody, somewhere saying, "I feel so good. Some days I forget - do I have a j-pouch?"

It feels like nothing short of a miracle....

thank you SO MUCH!!!
Your support and well wishes help soooooo much!!!

Fantastic Jilly!

I have been trying to avoid being on antibiotics all the time but just put myself back on Augmentin today. I finished a round of flagyl 2 weeks ago and have been going down hill bit by bit until my abdomen is a big ball of pain again. I have IPS, not pouchitis. Loperamide and antibiotics are all that is helping. I still need to take daily pain medication and add antispasmodics when it gets as bad as it has been the last 4-5 days.

I want to thank you for starting this thread as it has helped me face the fact that I need to listen to the Mayo GI I switched to. He does know more about all of this than I do.

This had been going on since June, I take augmentin or flagyl and then go off until I get in bad shape so start taking it again, then after a round I got off until I get in bad shape, etc. I can't take cipro because I've gotten c.diff from it in the past and I've had c.diff several times since take down.

I also take an antidepressant, unfortunately Cymbalta didn't work at all for me. They are good for our pouches. We loose a lot our mind/gut chemical connection when our colon's are removed and I think it makes sense we need to take an antiD.

I would like to have a day I didn't remember I had a j-pouch, it's been almost 3 years already!

TE Marie,
It took them 12 years to find just The Right combo of drugs. I don't know if I'll flare the second I eliminate just a portion of one of the three pouchitis drugs I'm on (Flagyl, Cipro, and Entocort). The game plan is to have me start the taper next Thursday. Who knows what will happen?

My point to you? Keep fighting for better health! Don't just accept your "lot in life" as one filled with pain. And I guess I should also remind you to listen to the Mayo docs!? Hell yes, you should! Hopefully, they know more about this stuff!

Take care,
There is no reason why this couldn't be you, forgetting you have a pouch!!!!!

I need to remember the Canasa for my cuffitis too.

I was in denial when I was finally diagnosed with UC, even after a stern talking to from my GI telling me I didn't realize how serious my condition was, it was pan colon. I did let him put me on a heavy course of prednisone for 6 months. I kept on with life and working and doing everything I did before and more, with 2 teenagers, husband, my own business, volunteering the whole 9 yards. That's when I got slapped down by fibromyalgia. Then I had to listen to everything as the UC flares began coming and more often.

So it is my own stubborn fault that I am not listening to my GI, who on top of being at Mayo, is the director of the department.

I had my thyroid tested and found out that it is too low again, that also affects pouch function, so I need to give the new medication dosage on it time to work as well.

I haven't heard of anyone else complain about this but my thyroid has been all over the place since my surgeries for almost 3 years. It tested just fine at Mayo in July and last Friday it was to low again - 3 months later. So now I will have it tested in 6 weeks again. I have every strength of the medication from 175, 150, 135, 125, 112, 100, 88 and 75. This is crazy. The thyroid glad regulates the metabolism of our entire bodies. If you are having problems, even if you aren't, get it tested. I asked to have it tested again as my flipping hair is falling out. It is a good thing I had a lot of hair to begin with as I've lost half of it!

Sorry for jumping on your thread Jilly. I'm a frustrated, balding, tired, depressed grumpy old lady today

I am very happy for you

This is wonderful news, Jilly!! Stick with the plan that works and the doctor who prescribed the cocktail. After 12 long years, you know what's best!

Huge hugs!