REMISSION PLEEEEAAASSEEE, JUST IN LIMBO....

I am so sick of being in limbo, I know I shouldnt complain as much of you are going through much worse, Having had UC for so long now Diverticulitis to add to it. Just came out of a flare but not quite there , this is different than my past history. Mabey its just the Diverticulitis, I dont know what to eat. Abd discomfort, no proper bm s, straining urgency, gas. Nausea...no queezy.MAJOR FATIGUE!!!!!!!!!! Three naps a day and early to bed! What the hell. Sick of cortifoam ...poor bum.Trying to stay positive but failing today. Dr. wants me to go on 6-mp . toooooo scared of side effects but still unsure. Mabey low dose will be ok?

UC 25-30 yrs dx as pancolitis
Asacol 8-10 prn
Pred 40 mg then taper prn
Cortifoam
Dysplacia found 8 yrs ago mild, took a wait and see approach .
good biopsys after, no dysplasia
periods of good remission up to 3 yrs.
last yr 3 flares all requireing 30 mg pred
MAJOR FATIGUE!!!!!!!!!!!!!!!
Off on med leave
Dr. app june 26
Surgery discussed a few times , Cancer risk getting up there, age 52.

Thanks for all who post . great site tons of info and caring people.Hope I can help someone someday.

Ellie

thanks Marianne,

It is such a difficult choice to make as all 3 of my choices stink! I realized today that I need to go back onto Prednisone AGAIN! So doing cortifoam for flare and 6-mp looks like it is now out of the running as clearly the cortifoam for flare is not enough. Option 2 , stay doing what Ive done for 30 yrs only its getting harder and I stay sicker longer. Option 3 j-pouch. So scared of surgery and all its problems I cant get on j-pouch.org site. but have got tons of good and bad info on it. And my pan colitis may be fizling out to just lower colon and rectum. I will know when I get biopsy back, but does it really matter?
Im so glad you are doing well and come to this site to mention it as to not all but many of us go through the thoughts of surgery.

I know the choices stink. UC stinks! I hate that anyone has to go through all this stuff. I was very surprised when my doctor told me that 40% of UC sufferers ultimately will end up having surgery. That is a large percentage. I really did exhaust all my possibilities first so if there are things left that you are willing to give a shot, then it may be worth trying them. I was on 6mp for a while and it helped a little at first then just completely stopped working. I still check in on this forum I guess because I want to let people know that surgery can really be a blessing in disguise. There is a lot of mis-informatioN out there about it. You can't let the things you read on the Internet scare you too much. MosT people posting on the help forums are people who just got out of surgery and they may be experiencing Complications. Even I had some complications and I was not too happy after surgery but theses things pass and you heal and get on with your life. The fact is that the j pOuch surgery has a 90 to 95% satisfaction rate. Unfortunately there will always be some folks who have major problems but it's certainly not the norm.

Ellie,

Sorry you're having such a rough time of it.

And if you don't want surgery, then take the time to explore different avenues.

I agree with stereo.

IMO you could also add:

- L-Threonine powder

- diet modification does make a huge difference in energy levels

- LDN - low dose naltrexone

I hope you start to feel better soon.