New to forum....hope for some information for husband.

Hi, I have been reading all of the serious problems you have all been going through and it is truly scary what might be down the road for my husband.

He just spent a week in the hospital after being immediately admitted following his first ever colonoscopy.  The dr said it was the worst colon he has seen in his 30 yrs of doing this.  He had been bleeding and going to the bathroom up to 12 times a day for nearly a month.

The pathologist that read the findings says acute colitis but not ulcerative but the dr who did the scope says it is ulcerative colitis.  Dr who did the scope is an internal med guy not gastro specialist.

He had  IVs w/flagyl, lots of prednisone, cipro and Delzicol and got better fast.  Right now he is on just the delzicol 800x2 day and tapering off prednisone, down to 10m daily.  He is so happy that he only has to 'go' once or sometimes twice a day and it is fairly normal but when he has to go he has to GO.  Maybe can hold it a minute or two.

I know most of you are dealing with much worse problems than this but I wonder if this will ever get back to normal.  It has been 2 months and we are very happy that there is no more blood or diarrhea but it still restricts his activities as he can't start his day till he goes to the bathroom.

I sure hope that research can find some true cures and help for all the folks that have to deal with this disease.  Thanks so much for taking the time to read this.

Here's another vote for mesalamine enemas, they really help heal the lower region which causes much of the urgency. They are better than suppositories but he could use both. Enemas at night and suppositories daytime. Insist on getting an Rx for both of them.

For me it took diet changes to get healed but perhaps your hubby will be able to get there with Rx alone.

He really needs to get a better diagnosis. If it is just colitis he can eventually get better and be off all meds. I suspect though that he does actually have ulcerative colitis. He can get better with that too but UC is a lifelong disease, usually requiring some kind of meds (such as Delzicol) forever, even when in remission. With UC if you get better and quit meds it will always come back, many times worse than before and the drugs you used to fight it the first time often don't work as well or at all next time around. That's why with UC you need to continue meds even when in remission, so you can avoid a future flare.

I am in a very similar situation. My GI did the scope and was convinced I had UC. He started me on UC meds immediately. When biopsy came back we were all surprised that pathologist didnt indicate UC, but only noted the inflammation and signs of Ischemic injury. My GI told me it could still be UC, but it could also be an infection, viral or bacterial, that got way out of hand. It could also be a crazy reaction to medication (I was previously on a round of cipro/flagyl that made me very ill instead of better). My GI's plan is to treat the symptoms (with asacol hd and salofalk enemas and suppositories) and then re scope, take more biopsies. If biopsies come back clean I am going to ween of all meds...and hope no symptoms return. I will then have a third scope for follow up. He said sometimes it can be hard to get the right biopsy and diagnose for sure, or it could be that something else caused my inflammation, ulcers mucous etc. he's pretty sure it's UC and keeps preparing me for it....but I'm hopeful it was some freaky infection and I won't have to deal with it for life

Pancolitis means colitis everywhere. Ulcerative colitis is IBD, along with Crohn's disease, and chronicity means 'forever' - a chronic illness. That sure sounds like Ulcerative colitis to me, but of course I'm not a pathologist.

Please clarify with the doctors. I spent 15 months 'undiagnosed' when the doctor really had a diagnosis in my first pathology report all along.

I don't know if they were treating for c-diff or not.  I am not well versed in all the terminology associated with this disease.  He was very sick and I thought the flagyl was like a double dose of antibiotic along with cipro.  He is only on the delzicol and today was his last on prednisone. 

They don't really tell you anything if you don't know the right questions to ask and I still really don't.

Thank you for giving me a new question for doc.

Infectious colitis that they just couldn't pin the tail on. Take lots of probiotics!! His sigmoid is just hoping to need more time to heal. Try rectals, but sometimes time is all you need. I think that UC causes a functional issue with the sigmoid and transverse folds of the rectum/Houston's valves. Sometimes you can preform pelvic floor work, take turkey rhubarb or do an applied kinesiology massage to help heal. Quicker. If you still have very thin stool then getting the inflammation under control is the first step.

To add. You need multi multi billions. Just 2 - 5 billion is chicken feed. You need at least 50 billion to 100 billion or even more.

Pathology report will NOT state UC or CD...it will state consistent with if the doctor suspects it.

I suspect the doctor put him on all the meds including antibiotics and pred before the pathology report came back?
Since nothing was reported regarding an infectious invader, the conclusion was UC by the doctor.

Do you have a copy of the report?

welcome to the forum!
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