Newly Diagnosed with Crohn's

Hi Goldengirl,

I have a Daughter that was in a very similar position, and is now finishing up College.

It's very difficult when first getting diagnosed. Alot of confusion about meds, diet, etc. Everything is new, and I'm sure you're trying to absorb as much as you can about this disease, along with working hard at school.

The first thing you'll need, (and I'm assuming you have one), is a really good Gastroenterologist. If you do, and it's him that has prescribed the Prednisone, then that's fine. Prednisone, is a very typical drug used, especially the when first diagnosed, as it can get things under control very quickly. The side effects you're experiencing will subside in the coming weeks, as you begin to taper off, and particularly when you're off it completely.

After that, you really need to decide what type of maintenance medication you need. Can you relate some of the symptoms that you were having, and for how long? Also, what types of diagnostics have you had done. A colonoscopy with biopsies, is mandatory, and if you're showing inflammation in the typical Crohn's area, (the Terminal Ilium), than you might also need a Small bowel follow-thru.

As far as the long term maintenance meds. They might try Imuran or 6mp. This is a very logical step, before considering biologics.

I know when you look at the meds it's going to seem very scary. I'm not going to say it's not, but there are numerous Crohn's patients that thrive on these meds for many years, and many without any issues.

Lastly, you'll get alot of support and information on this forum. Keep posting and updating. Good luck, I'm sure you'll get things under control soon. Crohn's isn't a death sentence, but it's like a fire, that can become a raging inferno, if it isn't brought under control.

Hi!
I was diagnosed in high school and it was pretty rough.
My parents talked to the school to get me a special waiver to get out of classes quickly if I had to run to the bathroom.
Definitely go to accessibility and see what services they offer. I went to undergrad in Canada, where Crohns is considered a full on disability, so it was a little different for me there.
I'm an instructor now and I can tell you that it is better to establish communication with a professor early and show them what kind of student you are, before asking for any kind of favors. If you know that you will be missing classes, tell them up front about the situation and how you plan to meet your deadlines. The very worst thing you can do is completely go off the grid, which, although I understand as a fellow crohnie, will not win you any favors.
After almost dying as a kid, I got better and graduated high school. I went off meds completely. I spent the next 8 years ignoring my disease as it progressed to a more severe form. I never saw a GI and I ate whatever I wanted. The pain I felt was my normal and I judged it all as nothing because it was not as terrible as when I was a kid.
This was a deadly mistake that allowed my disease to progress to fistulizing Crohns
So don't do what I did.
Stay with a GI you trust. Take your meds. And accept your Crohns Diagnosis. Don't let family pressure convince you that you aren't sick because you don't look sick. Or you'll end up like me with an almost 6 year old inoperable perianal fistula.

I hate to tell you this - and I feel like I probably sound like a broken record on this forum - but Pentasa is not going to do squat for moderate to severe Crohn's disease. By putting you on prednisone and then recommending Pentasa, your doctor has demonstrated that he is a good 20 years behind the times in treating Crohn's disease. Recent studies the last several years have shown Pentasa is no better than placebo. Prednisone is effective but causes as many problems as it solves, and is only to be used in the short term as a last resort.

If at all possible, find another GI who specializes in treating IBD (Crohn's and UC). You should be on a more effective maintenance med. If your Crohn's is indeed moderate to severe, you should probably jump right to the biologics such as Remicade or Humira.

Just want to echo "beave's" sentiments immensely.

Pentasa is a useless med for Crohn's. Most GI's with current thinking wouldn't consider prescribing it anymore.

I too might be thinking about Remicade a this point, combined with an immunosuppressant. At the very least, try an immuno over Pentasa.

beave said...
I hate to tell you this - and I feel like I probably sound like a broken record on this forum - but Pentasa is not going to do squat for moderate to severe Crohn's disease. By putting you on prednisone and then recommending Pentasa, your doctor has demonstrated that he is a good 20 years behind the times in treating Crohn's disease. Recent studies the last several years have shown Pentasa is no better than placebo. Prednisone is effective but causes as many problems as it solves, and is only to be used in the short term as a last resort.

If at all possible, find another GI who specializes in treating IBD (Crohn's and UC). You should be on a more effective maintenance med. If your Crohn's is indeed moderate to severe, you should probably jump right to the biologics such as Remicade or Humira.

I throw my hat into the "agreeing with beave" camp.

I was diagnosed in 2000, so the biologics were barely available in America, let alone the UK. Going purely by symptoms, my case was a mild one to begin with. My doctors threw various mesalazines (which is what Pentasa, Asacol, etc. is) at me for the next 5 years, even though I could not tolerate them and got extreme reactions. Obviously didn't make myself clear enough 'cos they kept on trying the mesalazines with me.

By the time my hospital got around to prescribing a stronger class of med (azathioprine), my disease and symptoms had already taken a sharp turn for the worse. This was in 2005, I think. I perhaps didn't give it as long as I could've done (or am I thinking of the 2nd time I was on azathioprine? Aargh :-/), but it didn't help. Cue five years of steroids and immunesuppressants, and being messed about with. In 2011 I changed hospital and my new GI got me onto Remicade straight away. But by that time it was too late, my colon was beyond saving. Ended up needing a colectomy.

It was never going to happen, but if I could have got onto Remicade in 2000, I might still have my colon. I'd rather take nothing than Pentasa, which is precisely what I'm doing right now. Been in remission for 2 years and counting. If the disease comes back, I'm gonna try to get onto a biologic straight away - if I can't do that, then 6MP or azathioprine. What I won't do is waste even a week of my time on a mesalazine/mesalamine (same thing, different spelling).

I sincerely hope we haven't scared you away, goldengirllover. Welcome to HW.... :-/

Prednisone does that - it makes you feel much better quickly. That's good. But the bad part is that it does not heal the damage being done in your intestines, and it also becomes hard to stop. You try to taper down the dose of prednisone and the symptoms come right back.

I know it's tough to be assertive about your health care, especially when you are younger, but I strongly encourage you to skip the pentasa all together and go for a more appropriate medication. Pentasa is a waste of time and a waste of money. And as NiceCupofTea pointed out, while you try a med that is useless like Pentasa, there could be damage being done to your intestines that will cause issues the rest of your life. If you have aggressive disease - and it sounds like you likely do - then the quicker you get on an appropriate medication (NOT pentasa), then the quicker you can control the damaging inflammation. That will reduce problems you deal with in the long run - months from now, years from now, and even DECADES from now. Do not waste time trying a drug that has been proven useless in treating Crohn's disease. Irreversible damage could be done in that time.

Yeah... I probably wouldn't have listened either, gypsy. It seemed like the safest choice at the time, and it was only after the damage was done that I understood it was a mistake. These medical decisions are really hard to make. goldengirllover....we are just trying to help, but you need to make your own best choice. We are not docs and are here for support.

A word of caution on prednisone, I recently watched my mother nearly die from side effects from prednisone, please do not rely on it. It does wonders yes, I am prescribed it in emergencies too and I can say that up until recently I also followed the take some prednisone feel wonderful then wait for the next flare and take some more, but that is a bad cycle. My mother has been put on it for asthma flares and has been prescribed it here and there over the course of 20 years. One of the last times it damaged her kidneys. The last time it nearly caused respiratory failure because it cause fluid to accumulate in her lungs and caused her to be on a ventilator for 3 days. I know this does not happen to everyone and not the first times you take it, but over the years it causes trouble. You may need it down the road, please don't over use it now.

God no!
I'm never going off remicade.
They'll take me off of it when I'm either dead or in an allergic reaction caused coma!
That drug saved my life!