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Well, here it is.

First off I'd like to say howdy to everyone.

I've been lurking for afew weeks, reading up on what everyone has going on, helpful solutions, stuff like that. Figured it was time to register and let this all out. Might do me some good.

So, as you probably can guess, I have Crohns disease. I suppose I should start at the beginning, since that'd paint a better picture.

I guess I'll start at 20, since thats when things started happening. I had been having really bad pains in my rear end, and I kinda just lived with it for afew months. It became normal to feel a pain everytime I took a step or to sit down, and I just kind of filed it away under trivial. I hadnt brought it up until people started noticing. My mother [A Registered Nurse, thank God!] decided she'd had enough and wanted to look. It all seemed like Hemmeroids at first, but ended up being a rectal abscess. Even the surgeon I talked with about it said it was one. It grew to a rather large size, since I wasnt doing anything about it, but on my 20th birthday [up at my grandparents, of course] I ended up unable to sit down or even walk, it hurt so bad. Even going to the rest room ruined the day. I ended up the next day going to the ER for it, and they jumped right in, considering it was about the size of a golf ball. One drain later [the one with the internal drain head. Looks like a Mace from Midevil Times. I joked I could beat a man senseless with it] and everything was okay after that.

Well, not so okay. Seemed I was having gut problems before I even knew it. A year passed, and I kept having rectal problems. No abscess, but I ended up passing blood alot [turned out I did have hemmorhoids, at least for the time being, especially after everything that was going on] and leakage from that particular area. I just kind of assumed it had something to do with the abscess, and that it'd clean itself up in time. Boy was I wrong. Turned out I was carrying a fistula for quite awhile down there. Thankfully it never went internal. I just kinda filed everything away under "Its nothing, just let time heal it" and began putting toilet paper there to keep the leakage from ruining me. That was not a good idea. Turns out, if you do that, you'll rub yourself raw and make it worse.

Well, after so long of these problems, and sores in my mouth and throat, I ended up going to another town over [Anchorage] to see a specialist. Oh, this was while I saw another surgeon [One of the best in town, I cant thank him enough for being patient and caring] who did a Sigmoid scope, and found what appeared to be ulcers in my intestines, at the Ilium. So, going to see the specialist in Anchorage [no specialists in Fairbanks for things like this. Yeah, bad luck.] we ended up staying there for a good week or so. I had a Colonoscopy, the second one I've had [Nobody likes the prep drink the day before. Nobody.] and he pinpointed what it was. Sure enough, Crohns disease. My Mother also has Crohns, so it wasnt such a blowout thing. In fact I was quite pleased, considering I finally knew what I had. Not knowing what was going on was just downright horrifying. So, now at 22, I ended up dealing with the fistula I carried [Yeah, too long for comfort]. Turns out after afew visits to the ER and radiology, I ended up having another abscess with fistula [On the other side of my rear. Total bummer.] I had been having horrible chills and fevers reaching 102.9 every day, sometimes multiple times. I was prescribed anti biotics, and it just didnt seem to work out. So, after afew rounds at the hospital and with my doctors, the abscess was found out. So, here I sit, with another drain [this time just the straight tube, thank the lord. I can lay on my back!] and just eating pills constantly. Thankfully the fevers havent returned in afew days, and trust me, not shaking yourself into the electric bugaloo every few hours is heaven. Unfortunately, I think I'm having a flare up. My guts arent hurting so much as I feel sick almost all the time. I throw up every few days, and I cant really stomach much. Even my favorite foods I cant keep down, and thats really bumming me out. Laying in bed alot and unable to eat, but having to so I can keep these pills down is tough work, dont let anyone tell you different.

So, here I sit with a drain, nausea, thrush from the antibiotics, and throwing up every few days, which has made my throat hurt really badly, and of course I have alot of mucus in my throat, so thats contributing to some of the vomiting as well.

Anyway, I figured I'd let it all out. I apologize about the wall of text, I didnt know I'd write a novel about it. Heh. Anyway, I also want to send out a message to folks who might be going through alot of this and get depressed about it. Trust me, get help, and keep friends and family around. You need a support group for it, because if you end up like me, and I've noticed alot of us do, laying around day after day munching pills after pills, gets pretty depressing. So just try to keep a chin up and talk about it. Try to laugh!

Thanks.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

I must say you really have been through the ringer with this disease. What meds are you now on for the crohn's? How often are you seeing the doc and are they aware of the nausea and vomiting? We do also have a fistula's/abscesses forum that is definetly worth checking out so you can have a chat with others who have these: http://www.crohnsforum.com/forumdisplay.php?f=76.

Wishing you all the best.

AB
xx
 

David

Co-Founder
Location
Naples, Florida
Hi there Goose and welcome :)

Wow, I'm sorry you've already been through so much :(

What specific medications do they have you on thus far? Have they brought up the idea of enteral nutrition or even TPN with you as an additional treatment option to help get things calmed down?

I hope you're feeling better soon!

All my best to you.
 
Thanks guys. Yeah I'm on Cimzia injections twice a month, and I take Asacol HD daily. I havent informed my doctor yet because, well, I guess I'll have to blame it on being a little lazy, but I am going to see the specialist in Anchorage when I get the drain out so I can sit down on an airplane or in the truck. Nobody has mentioned enteral nutrition yet, but I'm downing Ensure and Boost when I can keep liquids down. Havent heard of TPN myself, but I'm sure the Doc will mention something about it. Its really great to have a support group on this, even just online. Cant tell you how much it means.
 
Well, abit of good news. After getting the drain out I was sent directly over to my doctor after what the surgeons office said. We took a risk and took me off antibiotics. I can honestly say that within a day I was starting to eat again. As I post this my guts are back to "Regular". I was on them for so long it started doing some damage, even though they say people can stay on them indefinitely, everyone is different.

Drain is clearing up rather well, although there was still a good amount of leakage. Now I just get to handle Crohns again! Woo! :worthy:
 

Angrybird

Moderator
Location
Hertfordshire
Thanks for the update hun, I will be keeping fingers crossed that things continue to improve for you. Please keep us updated on how you are getting on.
 
Hey everybody, been a while since I've posted, figured I'd get an update out there.
Finally rejoined the forum, and boy, have things changed.

I went to Mayo Clinic in November, had four [FOUR!] abscesses drained and placed in a drain and non-cutting setons. The drain has fallen out as its own and that area is healing rather well. The setons are still in and I see a doctor in Anchorage to check on the setons/get them removed [I hope, they're just getting a little too in the way]. Figured I'd let everyone know I'm still kicking and there is always a light on in the tunnel. Guts are doing fine now I'm on a regiment of Remicade and I'm getting some job interviews, so, yeah, I'd say I'm off the toilet and on my feet!
 
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