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New diagnosis

Hi everyone,

I guess I'm lucky because I got a quick diagnosis. 5 weeks ago I went to the hospital with severe abdominal pain and constipation. I was worried I might have appendicitis or something, I had never even heard of Crohn's. I had a CT scan done the next day and that evening my doctor called and told me I had Crohn's with severe inflammation and stricturing. They put me on Entocort which didn't make a huge difference. About a week later the pain got way more intense and they put me on Prednisone which worked amazingly well. Since then I have had some of the side effects. I have been in a total fog because I haven't gotten a good night's sleep in weeks. I had a colonoscopy done a couple weeks ago and that showed inflammation and abcesses in the ileum and rectum and the biopsies showed that it was all chronic. I guess I have a fistulas as well. So now it's official. The pain hasn't been bad since I have been on prednisone but I just started the tapering schedule and the pain came back in a big way after just 3 days. This has me pretty freaked out but I'm determined to get off this drug. Once I get down to 20mg/day I will start up with Pentasa. Does anyone have experience with this stuff? It sounds like the side effects aren't that bad. My experiences have been really different from the stories of others I have read. I haven't had much diarhhea at all. If anything I lean towards the other end of the spectrum with constipation. I probably lost about 10 pounds the first couple weeks but then my weight stabilized. This past week though the weight has begun to fall off me again- about a pound a day. This also has me worried becasue it can't be healthy to lose weight that fast. But I haven't had diarrhea and I have been really conscious to drink a lot of fluids so I shouldn't be dehydrated so I don't know what's causing it. At least I started out a little overweight so I had a few pounds to lose anyway. I guess that's it for my story. I have no idea what's going to happen in the future with all this. I'd like to think that it will go in remission and I'll feel like myself again in a few months, but this hiccup with the returning pain has me worried. I was glad to find this messageboard with other peopl'es experiences and I hope to post more in the future.

Thanks for listening (or reading I should say),
Mike
 
hello mike in maine!

youre right you did get a quick diagnosis! sorry to hear about all the inflammation you seem to have. youre crohns sounds like its kinda all over the place :( i also have an abcess in my rectum area. wohoo what a blast that is lol

i was on pentasa quite a while ago and i didnt experience any side effects with it. i think you just have a lot of pills to swallow.
losing weight rapidly is another lovely complication of the crohns. your body consumes a lot of energy with the inflammation, plus poor absorbtion of calories and nutrients due to intestinal damage, and then its almost like you cant keep up no matter how much you eat!
i know its hard, but try not to worry too much about the future. worrying just casues you more stress! i do my best to focus on the now and what you can do to feel better, but like i said i know this is really hard to do and i end up getting ahead of myself too.

anyways, welcome to the forum mike :) you will find lots of good buddies here.
 
Thanks for the message. I know I shouldn't worry so much. I've never really had any health problems before- i've never even broken a bone or sprained an ankle! Dealing with doctors and insurance is all new to me. I'll try to keep my chin up.
 
Hi Mike and welcome!
I'm glad you got a quick diagnosis! Your story is a lot like mine, was put in hospital w/ what the doctor thought was appendicitis, had ct scan and colonoscopy and within a few months had my diagnosis. Never had any problems (stomach anyway) before then. I was on pentasa but did not do anything for me. I have never had any diarrhea either, just the constipation. Now I'm on Humira and doing pretty good overall. When I've had to be on prednisone, I really like how fast it works and luckily I've never experienced any crazy side effects. Things will get better. There is a lot of great information here and everyone is very welcoming and supportive.
Pam
 
Welcome Mike!!!

I was the same as you...never went to the doctor, never needed to. Never broken or sprained anything. Heck I hardly ever even got a cold. Now I go every month to see my GI. No biggie, you get use to the system after a while.
 

soupdragon69

ele mental leprechaun
Hi Mike,

Good to see you found us. Welcome!

Tough to get your head rough so much info but keep going over and over things. Keep asking questions of your medical team and in time you will learn to "hear" your body and what it needs.

Dont ever take no for an answer if you are unhappy about any form of treatment or plan set out.

Ask anything you want here. We will happily listen to your good and bad days, your ups and downs and sit beside you on the emotional and physical rollercoaster Crohns is ok?

Looking forward to seeing you around!
 

GoJohnnyGo

One Badass Dude
Welcome Mike!

I'm sure being newly diagnosed and the information overload has you in as much of a fog as the disease itself.
 
hi Mike & welcome to the forum :)

that really is a quick diagnosis - which is great, hopefully you'll find the right meds combination for you soon and start to feel like your old self again. re the weight loss, yeah this is unfortunately very often part of the Crohns effects.. maybe try a nourishing food supplement drink every day in addition to your normal diet.
 

Kev

Senior Member
HI Mike. Welcome to the forum. My advice to you (tho you didn't ask for any) is to just give yourself 'time'. That's the great thing about an incurable disease. you have the option of taking it slow, as it isn't going anywhere. OK, crohnee humor aside for the moment... The total reality of this disease DOES take time to fully set in. Tho many of us have complained in the past about how long it typically takes to get the right diagnosis, those slow to get correct diagnosis do have the benefit of having been granted the time to adjust to the whole idea. I recall thinking.. 'at last I know what I've got' That can have a real upside to it.
Having it all crop up so suddenly.. well, that can delay the final acceptance, ok
 

GoJohnnyGo

One Badass Dude
Mike, I think you'll be surprised by how much you can do to help fellow sufferers by sharing your story. Everyone seems to pick up a little bit of this or that from each other (even if sometimes it's not acknowledged) -- that's one of the great things about an online community like this one.

I know I have. It's a tremendous resource.
 
C

catfud

Guest
Welcome to the forums mike, I'm currently on pred and pentasa at the moment. Side effects aint too pretty for me put taking it as it comes!

The venting and support section of this forums is great for those days when it just feels like everything is getting on top of you.

:)
 
Location
Wisconsin
Sounds a lot like me, though not the health part. I went in for a routine every-5-years colonoscopy on November 4 and on December 3rd, was told it was Crohn's. I wasn't even aware I was having symptoms other than some pain with bm's and some blood. Just figured it was fissures or something. My rheumatologist wanted me to get checked due to the scarring that was found in my terminal ileum 5 years ago. I've always had abdominal pain, but I guess I just figured it was "normal". At least for me. I don't have any strictures or fistulas, or at least they didn't say I did, so I assume I don't.

I'm on Pred as well. He started me over with 40mg for 2 weeks, 30 for 2 weeks, etc and he also started me on Pentasa 1000mg 3 times per day. Not sure why three instead of 4 - 4 times seems to be the norm. I think I'm in the mild to moderate category though, so maybe that's why.

Hope everything goes well for you!
 
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