I just got diagnosed with UC...help!

Hi, as you can see from my subject, I'm new to all of this and very very freaked out by the fact that since I was diagnosed (sep 15th '08) by whole life seems to be changing quite rapidly.

I have many questions and came across this site. If anyone could help, it would be greatly appreciated! It is crazy to feel so lonely and helpless even with your family and friends by your side.

I've been reading books about UC and I'm on my 1st week of Rowasa 4gm; while I find it very annoying to use those enemas every night, I seem to be doing better (no more blood so far!). I still haven't got the results from the biopsy and the doctor told me after about 2 weeks, he may change me to a pill medication.

I'm very afraid to eat anything! and for the entire week since I left from my colonoscopy I've had 2 solid meals, other than that, I've been eating baby food every day... I don't really have an appetite anymore and I think it is mostly because I'm simply afraid to eat.

What kind of pill medications are out there, I keep reading about people NOT wanting to use Remicade. Why is that? I'm not really sure what my doctor will prescribe, since he's waiting for the results.

Also, has any of you gone to a nutritionist to go on a special diet?? I read that wheat and dairy shouldn't be consumed. But the doctor said that it doesn't matter what I eat.... I'm not so sure about that....

Please, your comments, input, experiences will be a tremendous help!
Thanks!

Welcome to HealingWell, soundlady.

I'm glad to hear the Rowasa is helping you, and you may want to consider using it every few days even after you start oral medications. The inflammation of UC usually starts in the rectum and spreads from there when it flares, and Rowasa is very effective at treating proctitis (rectal inflammation.)

Generally the initial drug you may be given is one of the 5-ASA's: Asacol, Lialda, Colazal or Pentasa. These are all in the same family, but each is delivered to your colon slightly differently, so sometimes you have to try more than one to find which works best for you.

For acute flares, Prednisone or other steroids are often used short-term to induce a remission. These drugs are not appropriate for long-term use and the goal is always to taper off of them.

For the minority of people whose symptoms are not adequately controlled on the 5-ASA's, immunosuppressants such as Imuran or 6-MP may be prescribed. If the immunosuppressants don't control the flaring, some people will use biologicals such as Remicade or Humira. This group of medications is the newest available to us and can work miracles for some of us, but also can have some scary side effects in a small number of people.

Diet is highly individualized. While lactose and gluten intolerance are more common among people with UC, not all of us have these issues. Your best bet is to start a food diary so you can watch over weeks and months to see what foods always bother you.

Hi and welcome to Healingwell :) Judy explained things very well but I just wanted to clarify for you. You will see mention of 5-ASA's here on HW. This is simply a class of medications to reduce the inflammation in the colon. The 5-ASA's are Colazal, Asacol, Lialda and Pentasa. However, there are different form of delivery mechanisms for each and all of them except Colazal are mesalamines. Colazal is a basalazide. Each med releases differently mainly depending on the PH level in your colon. That is why there are different oral meds to try to find the right one for you.

Rectal meds are Rowasa or Salafolk which are liquid enemas (as you are aware), they are liqiud 5-ASA's, suppositories which are called Canasa. And steroid rectal meds which are Colocort (hydrocortisone enemas) and Cortifoam (hydrocortisone foam). These rectal meds are usually used if the liquid 5-ASA's don't help.

As for diet, I found that while in a flare that I need to avoid certain foods. But while in remission, I can eat pretty much what I want in moderation. You need to find what foods bother you because we are all individualistic when it comes to diet. The basic rule of thumb is to keep to the "white" foods such as fish, chicken, rice etc. But once again, you need to find the diet that fits your needs. The best way to do this is by keeping a food diary. Record everything you eat and keep track of your symptoms. Food takes 12-72 hours to digest so keep that in mind. You may find a common link. For instance, lets say you eat a salad one day and the next day you have an increase of symptoms. The possible culprit can be that salad. You can try it again in about a week and see if the pattern repeats. By finding the foods that bother and avoiding them, you can allow your colon to heal faster.

Do you know the extent of your Uc yet? Meaning, how far into the colon it goes?

yes, definately EAT! however, i do know how difficult it is. and definately don't jump to Remicade...thats definately 2nd to last resort from surgery. Since you have just been diagnosed your doctor will definately try all sorts of treatments in order to find the right one.

Unfotunately, I am on remicade and I hate it. I've only had 5 infusions but Ive alreayd had a reaction and have developed severe anxiety.

when i was first diagnosed 5 years ago I was put on almost 24 pills a day.
some meds i have been on over the years (asacol which is very popular and i am still on, imuran(azathioprine), ive tried neuron(sp?) which is a drug that transplant patients use, prednisone which you will most likely get on at some point very helpful but terrible sideeffects, iron which alot of people take due to lose of blood.)

take some multiviatmins and Omega-3. Yogurt has also been proven to show relief since its a bacteria eater. oh and do NOT stress it definately triggers it.

Anyways goodluck!!! hope things go better for you then they have been for me!!

Thanks so much for all the wonderful information!!!
I just got my biopsies back and just like the doctor has said , I have UC. It is Proctitis, so he decided that the course of meds for this would be Canasa after I'm done with my second week of Rowasa. He gave me the option of taking the pill or the suppository... hopefully I chose right for the suppository, since the location is so far down the colon (and he explained it takes too long for the pill to have its effect vs. the suppository in my case) -not my favorite thing to do though...

I've been slowly trying to eat solid foods, I've had salads twice this week and today, I ate some rice and chicken. Overall, I think after the initial scare, I'm starting to adjust to all of this, it is definitely a lot to learn about and honestly I have to say it has been a blessing to find this site and been able to talk to people about it openly.

Thanks again!!
Danni.

30 (almost 31) y.o
diagnosed sept 15th '08