New to UC

Hi, all.  My name is John and I'm a 34 year old male who was diagnosed two weeks ago with pancolitis, and BOY, has this been a whirlwind, and a life changing experience for me.  I never knew when I woke up about six weeks ago and started to have a little stomach pain and some diarreah that it would lead to this.  After four visits to my primary care physician, two rounds of antibiotics for what was thought to be EColi, and begging my PCP to refer me to a GI, here I am.  I've gone from aprox. 185 pounds to about 166 pounds in the last several weeks, and I quickly realized that my life is not going to be the same.  I'm currently on 20 mg of Prednisone twice daily and four 750mg Colazal twice daily to try to get it under control...my only problem is I am an "instant gratification" type of person, and of course I want to feel better now!!! 

Can anyone out there tell me their experience with the first diagnosis and how long it took for the medicine to "kick in?" 

I'm trying to remain positive, and thank goodness I have a desk job where I can sit most of the day and not really have to move around alot (I could never afford to stop working!!!).  However, it's so hard to do, when you go through the same thing over and over and over day after day. 

I'm so glad I found this board, so that I can share my experiences with people out there and know that I am not the only one suffering.

Thanks....and best wishes to you all. 

Hi John and welcome!

The pred took a long time to work for me if it even is at all. I also used hydrocortisone enemas (not fun the first few tries) but it worked for me in two weeks, not everyone is the same but rectal meds can I think sometimes help faster and are good to use in conjunction with the other meds. Also when I was first diagnosed the rowasa enemas were really helpful.

I know how you feel about work, I will always have to work and carry the health benefits for my family (husband is self employed) and it's really just not an option for me, though my co if very understanding when I need to take time off for appts or a sick day.

This is a really great place, I have learned so much.

Hope you are better very soon!

If you're in a pretty bad flare - and with a diagnosis of pancolitis, I'd assume you are - you're going to have to get past the "instant gratification" mindset. True healing to the point of remission may take a while and setbacks aren't uncommon. I don't mean to discourage you, but neither do I want you to have unrealistic expectations.

My best advice is to educate yourself. Learn all you can about UC, general digestive health and ALL of your treatment options... not just pharmaceutical meds. Here's a great article to get you started:

http://www.drhoffman.com/page.cfm/171

Hey John

Welcome. I remember it all so vividly, even though it was 46 years ago when I was 15. It was during the Christmas holidays. I had been out ice skating. Came home and went to bed early cause I didn't feel good. After about an hour in bed, suddenly I had the worst cramping and diarrhea and it didn't stop. Twenty four hours later and it was getting worse and what was coming out of me was black. It scared my parents. I had had a minor surgical procedure for sinus problems so they took me back to the doctor who did that thinking it was a reaction to the med he put me on. He just said it was no big deal, told my parents to give me aspirin for the fever. A few days later I was worse and we want back and he did the same. By this time, I had lost about fifteen lbs and my dad took me to our primary. He took a look at me and put me in the hospital. By the end of the first week I had lost 30 lbs and needed six blood transfusions. And still it took two more weeks and what seems like a zillion barium enema x-rays to diagnose (there were no colonoscopies in 1961, at least not in my hospital).

I spent a full month in the hospital and on prednisone for a long time......high dose for a while and then mostly minimum. But the good news is that a year later I went back in to the hospital for a check up, or so I thought but my parents told me later that the doctors told them they believed my colitis was so hot and it was pancolitis that surgery was the answer. However when they did the test they were shocked that my colon had improved so much and was down to just left side. So that was the good news....it can get a lot better.

It never does go away completely but here I am at 62, having lived a normal life, went to college, taught school, family...the whole thing. I have mild flares a few times a year. And occasionally have had a HOT flare. For me, the older I got the less intense the flares.

Good luck and hang in there.

Hello John,

Lots of interesting information has already been shared with you from other patients of UC in here. I am kind of tired and didn't really anticipate posting anything this evening, but I will share a little bit and possibly add another post or two in the near future.

I am 25 years old, now. I initially begain experiencing symptoms of UC back in July or August of 2005. It started with always having an urgent and loose bowel movement every morning. Then the urge to go to the bathroom became more and more frequent and more and more urgent as time went on. By September, enough was enough and I decided to see my general physician. I had the standard blood and stool samples to check for common offenders, but the tests came back negative. So I was referred to a gastroenterologist and upon an initial brief "physical" examination, the specialist put me on 40 mg of prednisone per day with 2.8 grams of mesalamine (Asacol) per day. I wasn't very compliant with my medications, as at the time I had an irrational resistance and fear of medications. I was under the naive impression that I would be able to correct my illness through manipulating standard lifestyle variables and living more healthfully. This didn't turn out to be the case. Anyways, I had a flexible sigmoid endoscopy in October of 2006 and was told I had Crohn's disease. I think saw another specialist as the first specialist I had seen was older and implied that he would be retiring soon, and that I should seek out a younger specialist to monitor me over the long-term as this would be a long-term health problem for me. I had a small bowel follow through (barium enema drink) and colonoscopy in March of 2007 and was told I had ulcerative colitis. To make a long story short, I have been sick for the majority of the past two years and have yet to find a drug treatment that will hold me in remission. I guess my situation is towards to more severe end, but I am hoping that the next drug treatment I use (infliximab/Remicade) will be the answer to my UC difficulties.

To share experiences of mine that are more relevant to your current situation, I will tell you that I have used prednisone five times in the past two years for at least two months to control acute phases of my UC. I have also had mixed results with the prednisone. The first time I ever used it, I experienced significant relief within a short timeframe... I think I might have even felt "perfect" in regards to my colon health within 7 to 10 days. I did suffer pretty noticeable side effects, though. I felt very hot, like an internal sensation of burning, due to the stimulation of metabolism that prednisone has on body tissues. I also experienced hair loss and difficulty sleeping. Superficially, I had a big moon-face and felt bloated in the abdomen. It made me feel self-conscious. There was another time, though, that prednisone didn't really do anything for me at all. After using it for two weeks at 40 mg/day, I eventually ended up being hospitalized because my symptoms were so severe and I was losing a lot of blood and weight. I am currently on prednisone again to control another flare, tomorrow will be my eighth day on 40 mg/day, and I am having moderate success. My pain and frequency has decreased, but not as significantly as I would like. It is weird how prednisone has affected me differently during different episodes of its use. Just as I am experiencing not-so-impressive benefits from the prednisone this time around, the side effects are also less severe than I have experienced before during a couple of prednisone phases. I have little difficulty sleeping and feel much less of an internal burn this time around than before.

As for mesalamine (Asacol), I think it takes two to four weeks(someone please correct me if I'm mistaken) for it to provide you with a benefit, *if* it provides you with a benefit. Hopefully you will have strong relief from the Asacol and won't need to try out other medical options as Asacol is a very well tolerated and very safe long-term drug. Asacol provides me with minimal relief, and I have been using it for the greater part of the past year, as a dose of 4.8 grams per day (6 x 800 mg tablets, daily).

If you do need to stop working, temporarily, you can apply for employment insurance benefits to cover you. Hopefully you job can pay you some sick days, as well? Keep us up-to-date and I hope things work you quickly and relatively easily for you.

 Hi, and welcome.  I too had issues of ' instant gratification'.  Wow, how soon you see that mentality has to go away.  I needed to learn patience and let meds work because I would stop and start and get upset and sad.  Finding a mixture of meds that help you feel well takes a while.  I am now learning that after a year and a half, slow learner..hehe  Hang in there and you will do well!

Hi John..welcome to the forum.
You could/should ask your doctor to add some rectal meds to the mix.

You're on prednisone....tapering will take a while..and you may have some regression of symptoms.

Eventually, you'll realise that the "want it now" way of thinking doesn't work so well. Learning patience will go a lot farther.

Is your UC throughout or limited?

I've never been on prednisone....just 5ASA meds ... Asacol (oral), Salofalk retention enemas (rectal). I learned patience with meds a long time ago...with the encouragement of my GI, who was right. It's paid off for over 18 years.

quincy