Haven't posted in a long while

To the regulars and newbies -- hello and Happy Thanksgiving.

It's been a hectic and crazy past 3 months. We did go to Aruba for 2 weeks and did quite well overall. A few ups and downs but nothing that compromised the vacation as the UC did the previous 2 years.

A trip up north for a wedding went well -- until the actual day of the wedding...........long story short thankfully immodium saved the day. And thankfully we bring the Depends just in case as a security blanket. By the time of the wedding things calmed way down and no emergencies. Happy it was an evening wedding.

Last week....Back to Mayo clinic for 4 days. He has improved "marginally" and the treatment is now a bit more aggressive. Forgot to update the signature line below......imuran is now 200 mg with monthly monitoring still and Rowasa nightly and cortifoam in the AM. Colonoscopy shows left sided still - the lower 12-14" quite rigid and the cause for the gas, pain and cramping. Dr wants him to reduce and wean off the morphine and the patch can stay for now.

It has only been about 4 days - the rowasa he is tolerating ok - retains it for 5 hrs at least before he has to go to the bathroom. He doesn't know if it is mind over matter but he feels a little "different" in that a little better and had one of the most normal movements last night.

(In late Sept he had 5 -- yes FIVE absolutely normal days and we were thinking oh boy maybe this is the long awaited remission but no it wasn't as he went back to the normal state. It was a great 5 days thouugh...lol)

Bottom line the Dr at Mayo is trying to get him in a much better place as down the road it could be the Remicaid infusions and ultimately surgery if that doesn't work. But that is wayyyyyyyyyyyyyy down the road and hopefully not necessary.

Me with my 50 questions.....the small intestine looks great - absolutely no signs of chrons and if it ever happened he needed surgery (or at least as we speak) he would be a likely candidate for j-pouch which I think is a good thing to know. Hubby doesn't want to know all that stuff but I think it is a good thing to kind of know the "what ifs".

Well gotta run as he has an appt with his local GI today to get her up to speed on the Mayo stuff.

Sorry I haven't been around.............just wanted to let all of you we are still among the living....Thank God!!

Again - everyone try and have a nice Thanksgiving.

thanks for posting. My husband was recently diagnosed with chrons but it's only in his large intestines and part of me still wonders if it's UC. Anyway, he's having a portion of his sigmoid colon removed dec 9th. I have all sorts of concerns and anxiety over it and I'm definitely doing WAY more research than he is. Like your hubby, mine also doesn't want to know about the what ifs... But I sure do!

Anyway, I just appreciated your update and get some type of comfort reading about others is a similar situation (although at the same time, hate knowing that others are suffering too!). I wish you the best of luck and hope your husband finds remission soon

Thanks --  the Dr from Mayo clinic called today with the biopsy results and everything was fine. 

It's funny hubby is somewhat satisfied with the way things are (especially when you have something so severe to compare it against) and has accepted if this is the way things will be he can deal with it. 

However the Mayo Dr and his local Dr he saw yesterday do not feel that way based on the photos of the colon and current diagnosis.  So hopefully upping the imuran and introducing the rowasa will help get the lower area in better control.  They're the experts and know what and why the current state is not all that good but hubby is somewhat puzzled.  They are really bent on getting this in remission.  Hubby is just so happy he has most of his life back and deals with the inconveniences.  Would be nice to get a better handle on the gas, urgency and frequency but at least he can basically control things which is a major improvement.

Happy Thanksgiving!