My Story.

Hi, everyone. I've been posting here for a couple of weeks. Thought I'd finally post my story. I know that everyone has their own, but this is my story. I'm looking for any help and suggestions. This is my first time putting it online. I haven't gotten to have a lot of feedback about it from other Crohnies. This is me asking for help.

I was diagnosed in May of 2008 at the age of 23. I had been showing serious symptoms since September of 2007. Lost maybe 20 pounds or so. Started going to the bathroom enough (7-10x per day) that people pressured me into seeing a doctor finally in May of 2008.

By the time I had my appointment, it took my 1st Doc 10 mins to convince me to schedule a scope down both sides. Before I even made it to the date of the scopes, I wound up in the hospital from the pain. I was misdiagnosed by an ER Doc with some acid issue (can't remember, because it was so rediculous). So, I went home and waited for the scope date.

The scope showed a lot of ulcerations, inflamation, etc. Blood tests and Biopsies, along with the scopes, confirmed Ileocolic Crohn's. After beginning various meds (prednisone, Asacol, etc), they scheduled me for a Small Bowel Series. It didn't show much. I don't know if it was because of the equipment, of if my body wasn't cooperating. All I know is that the Tech changed from X-rays to some hand-held machine. He had to lean on me to be able to see anything. I think I stopped it before he was able to draw any real conclusions.

Some 6 months later, I still hadn't settled on having Crohn's. Nothing my 1st Doc was doing was working. I was stuck eating close to nothing, as the meds I was on wasn't working. I wanted a second opinion, so I went to MayoClinic. I loved the idea of being able to have everything done at one place within such a short period of time. I was able to meet my 2nd Doc. He understood why I would've wanted a second opinion, having it be such a "sentencing". He scheduled me for blood tests, a Capsule Endoscopy, and two regular scopes on both sides again. In the end, he confirmed my original diagnosis of Ileocolic Crohn's.

When I went to schedule a new appointment with my 1st Doc to see what else we could do as far as treatments were concerned, I was turned down. It turned out that that Doc did not take kindly to second opinions. He thought it would be best for me to seek help elsewhere.

I found Doc #3 not that far after. He's since had me on the same meds. The levels of them change slightly. I just had another double ended scope with him a couple of months ago. It was at the start of my remission, so symptoms were really controlled. There was a lot of scar tissue. And he did notice strictures though. I don't understand since I've never had surgery or any other issues but this Crohn's with my stomach or ab region.

I guess I just have some questions.

Is it okay to be on Entocort at these high levels everyday for 2 years straight? What else is available for me to take?

I'm allergic to Sulfa, which is why I take Asacol. I plan on having kids within the next 10 years too. So, I know I should try to stay away from Immunosuppresents. But I know that I haven't found any studies with Biologics and planning parents.

Current symptoms are just bm's about 2-3x per day (my new normal), pain (finally talked him into giving me something other than me taking 2,000-4,000mg of Tylenol every day for the past 2 yrs too - yay Tylenol 3 ) Oh, and a rediculous amount of headaches.

I know this is rediculously long, and I'm sorry if you've actually lasted through the entire thing. Hope I haven't left anything out.

Thanks, guys.

Hi Jessica,

Welcome! First, for pain I'd ask for Vicodin. One of the nice side effects is it slows passage of stuff through your intestines. You have crohn's, you should have good pain meds!

I can repeat what I've read in brochures concerning the medicines available but there are a ton of people on here who've taken everything and then some. Check out Ziggy's posts under the treatment section. That's probably one of the best reads on the site.

Good luck finding what you're looking for!

Hi Jessica
and welcome

I'm not sure about the Entocort, I only stuck with it for 6 weeks, I hated it!
Re: your headaches, ask about Amitriptyline, I can't stress enough how fab this med is! I've had chronic head, shoulder and neck pain for ever, I saw an osteopath 3 times, cost a bomb! Then my GP put me on Amitrip, the effect was immediate! Pain has gone, and I'm sleeping well for the first time in years. Fellow Forum member Cat has terrible headaches too with Entocort, she's on Amitrip now, and doing well. I believe this med has reduced my belly ache spasms too!
Glad you're sticking with us Jessica, lots of friends here for you
lotsa luv
Joan xxx

Hi Jessica. As Joan said above, I experienced bad chronic headaches as a side effect of Entocort. My GI put me on Amitriptyline, which immediately stopped my headaches almost completely. I'll still get a headache every so often, like last week we had a bad storm blow through and I got a headache due to the low barometric pressure (for some reasons storms/pressure always gives me a headache!). But for the most part, no headaches! And as Joan also said, Amitriptyline can also calm the gut and help put you to sleep at night. It's definitely worth asking your doctor about.

Hi Jessica and :welcome:

Good to see you here. I'm sorry I can't answer your questions but I can tell you that isn't a long post!................you should see my my first post! :lol:

I'm glad you have found another decent doctor, sure don't need one with the precious ego your first one had. You don't need to have surgery to have strictures, they are caused by scar tissue and this would have occurred over time with chronic inflammation, when the area heals it causes scar tissue to form and over time this can sometimes lead to narrowing (stricture). This doesn't always happen but the key word here for you would be chronic.

I hope you continue to stick around and look forward to seeing you around the forums. Good luck and welcome aboard!

Take care,
Dusty

Thank you, everyone.

Tmos - I have Lortab that I take when it's bad. I just don't like to take them because they make me feel more drugged than better. I'll have to talk to my Doc and see if there's anything else. Good pain meds is a necessity!

Astra - I'll ask my Doc about it. I'd hate to have to add another med to my regimen. The thought of taking a pill to treat the side effects of another pill seems redundent. If there's nothing left for me to change to, I'll have to see about adding this or something like it. Thanks!

Cat - I'm the same way with pressure headaches. Lucky for me, hurricane season is only another month!

Dusty - Yea, my doc talked about surgery the last time I had my colonoscopy. Well, it was my first with him. So, he finally got to see first-hand what I bitch about. I guess it's getting bad enough I might need surgery soon. Always awesome to hear.


Thanks again, guys. <3