New to ulcerative colitis

[jms_9967]

I've just been diagnosed with UC.  It was a delayed diagnosis, which caused my symptoms increase in severity and required hospitalization for a few weeks.  I'm now back home, taking prednisone (which they are slowly tapering off), Lialda and enemas.  I also developed a deep vein clot and am on coumadin to heal.

I guess I'm simply looking for some wisdom and encouraging words.  I lost 20 pounds over the last month while being sick, am now anemic and quite weak.  I do see very tiny improvements each day and I realize this is going to be a long haul back to health.  It has scrambled my mind to see how quickly I went from a healthy 41 year old woman to a shell of my former self.  

The medications have greatly improved symptoms (no more blood and no frequent bowel movements), but I'm surprised at how much pressure pain I'm getting with bowel movements or even gas pains.  Of course, I've only been out of the hospital for a week, but I guess I had hoped it would have subsided more.  Not the excruciating cramping I had been experiencing, but it would be nice to have bowel movements be a regular, normal activity again.

Can anyone out there let me know if this is all normal, what I should expect and most importantly---am I ever going to feel normal again?

Janet

[melissw]

Hi Janet,
I'm 28 and I've had UC since 2001 and have experienced the ups and downs.  The most useful advise that I can give is to remember that the flare up will pass and that you won't always feel bad.  it's been a cyclical disease for me, alternating between good times and nasty ones.  I've learned to be a little patient and accepting of my condition; but of course, it still gets to me.  Rest up, stay hydrated, avoid fiber while you're feeling bad.  While everyone is different, diet/stress can play a big role.  Be gentle with yourself in all ways and hang in there.  

[TrudieC]

Hi there.  So sorry you are having to live with this awful disease.  I was diagnosed with UC when I was 22.  The first 5 years weren't too bad and they were able to treat with just asacol.  In later years (and with huge stress in my life - you need to find ways to keep that down) I had very severe attacks that put me in and out of the hospital and on Prednisone.  After 10 years my bowel perforated while in the hospital and I had surgery to remove my colon and was given an ileostomy.  After a year (the pathology was not clear as to whether it was UC or crohn's) I had the J-Pouch surgery which totally eliminated the disease and gave me back bowel function.  The first year was rough but it has now been 15 years and it has been heaven being healthy.

My son is 22 and now has UC.  I am so impressed at how many improvements there have been in how it is treated.  He has had 2 attacks and this last one was not as severe since he didn't have the delays of diagnosis (as did you) and got into the doctor quickly.  He is again on Prednisone.  He takes the steroid enemas most days to maintain.  His doctor is going to be putting him on Imuran (an immune supressant) which should force a long remission but I am nervous about the side effects.

What you are feeling is as is expected and it will improve once you heal some more.  You will feel normal again.  Pay close attention to your disease.  Keep your appointments and get in there if you feel an attack coming on.  You need to hit it off at the pass.  (I was very guilty of this and my doctor was not doing regular sigmoidoscopies as he should have known my colon was in such bad shape).  You might want to look at iron pills to get your anemia improved.  Watch your diet.  My son avoids spicy foods, has cut coffee, and eats limited dairy, high fiber items and sugar.  I've done some ready that a gluten free diet can be beneficial for UC but he won't go there.  This is highly controversial but smoking pot does help and there are even pot pills you can take now.  I am in Canada so is a little easier here since we have a government medical marijuana plan.

When you do gain your weight work hard to exercise and keep youself in good condition.  This will help to ward off attacks and give you the reserves to better fight one should it arise.  Good luck with everything.