My Disease and I

[BWS1982]

Hey I'm Benson and was diagnosed with Crohns in Sept of 2006 via colonoscopy (and a bunch of other fun expensive tests) while in the hospital for 4 days. Symptoms put me in there and they wanted to know for sure. So, I started off on Asacol 3.5 grams a day in 3 doses, and some prednisone (for 6 weeks) and colocort enemas.

The flare died down after 7 months around Easter 2007 finally and I was so relieved. I was able to put my muscle back on from not working out and gained most of my weight back, went on a cruise and ate practically everything under the sun without a single problem. I felt like I'd been cured. It stayed dormant for about 4.5 months and then in mid August of last year it came back with vengeance. First slowly, then finally it got even worse, despite the Flagyl and Cipro and enemas and all, it still got worse, so a second colonoscopy was done in early October, and was discovered the disease has progressed and it's not mild Crohns anymore. Almost all the large intestine this time was inflammed instead of the 2 "bends", so they upped the Asacol to 4.8 grams and put me on prednisone and enemas again. I actually started to improve after a few weeks, but then as I went from 20 mg a day on prednisone to 10, I flared again (this was around a week before Thanksgiving), and over the next few weeks they kept raising the prednisone back up, but to no avail. It ruined my Christmas and Thanksgiving and New Years (at one time I had to run to the bathroom mid way through opening a few presents, I'm still so angry about it). Finally after fumbling around and only getting worse, they put me back in the hospital in mid January last month and did a few more tests. I have a goiter now and they are trying to rule out cancer, I've had to go on Metaprolol to slow my heart because the prednisone is make it race so fast, I've lost 50 lbs. since my diagnosis, I've had Crohns related arthritis in my knees, I've had to wear depends to bed and work because I can't control the symptoms in time. And of course all the other symptoms that make you feel like you're falling apart, from cramping to skin problems and nausea, etc.... Trying not to be negative though. The hospital stay brought about a new dr and now I've taken 2 infusions of Remicade, but things have been up and down. I'm still going every couple hours and I'm growing tired of this garbage. I have another Remicade dose on March 6th and I hope to God it's the one that kicks it out for good.

Meds on right now: Prednisone (30 mg/day), Metaprolol, Imuran, Remicade, Bentyl, Loperimide, Pepsid (for the prednisone), and Canasa suppositories.

I haven't been able to decipher a single dietary solution to what seems to be agreeable and what doesn't, as I see no patterns, sometimes I seem to be alright from food A and then a week later I feel horrible after eating the same amount of it. And since Crohns is different for each patient, it's only trial and error that is effective for sure.

I've been extremely depressed and angry about all this for a while and probably seem like I've been feeling sorry for myself. I wouldn't wish this stuff on my worst enemy and I almost feel like this is some sort of penance for my sins because this is so horrible. I just want to be normal again and I've seen failure after failure from treatment only to see my bank account change. Anyways, that's my pessimistic intro to myself, hopefully I'm not sounding like too much of a kill joy.

Nice to meet all you, and I'm glad I'm not alone in this war.

 

[butt-eze]

I'm so sorry to hear about your struggles. I too hope that your next infusion is the turn around you've been looking for.
The good thing is that you know you're not alone in here and that there is a light at the end of the tunnel. It seems most of us eventually find a combination of treatments that provide relief.
Please let us know what we can do to help!

 

[Sojourn]

Welcome. I know what you mean about how one week it seems a food will be okay and then the next it isn't. It's really hard to narrow down what works and what doesn't sometimes. Hopefully the Remicade will kick in. I agree that most of us find a combination of treatments from diet to supplements and medicine in varying forms and degrees of each. It can be a tough road but you'll find a lot of good info and support here.

 

[BWS1982]

Thanks

Thanks for the replies and support. I should also mention I've only recently come to accept this disease to the extent of having a support system (this forum). I've been too upset to focus on it more than I have to. There's a chapter for Crohns in the area but I'm in the far far suburbs of Chicago, and the nearest one is a long drive away. I feel this disease is always in my face and anchored to me, so when I've had the freedom of immersing myself in what I want to, I wanted to escape and get away from it, not spend time talking or reading about it. I read a ton on it when first diagnosed, but not much since then, so I do know a lot about it. I just try to block it out. I also get frustrated by all the times I talk about the disease to acquintences, friends, family, neighbors, coworkers, etc...and as understanding/supportive as they are, they have no first hand experience to relate to me with. I want to talk to someone who's been in my shoes. Sometimes people are insensitive about this too. My boss complained about my performance before giving any words of concern to me, and others have jokingly asked if it's contagious once I told them I lost 21 lbs. in 2.5 weeks once. I feel so alone when nobody "gets it", but at the same time I avoid the disease when I can so as to get it out of my mind. The really disgusting and embarrassing symptoms of this are something that you can't really talk to others about unless they have it too.

 

[Methofelis]

Hey there.

I know what you mean about friends and support systems. They either have no idea, or say things such as "Oh really? Yeah, when I eat Thai food sometimes I feel a bit rotten" in order to relate. It isn't their fault (hey, good for them they can't relate, right?) and sometimes their attempts can be almost humorous.

Talking about the symptoms can be harsh. Nobody wants to talk about the contents of their toilet bowl or the fact that they had to buy Depends this week -- again.
I was nervous about it... so instead of just going from person to person and explaining my issues when they asked, I wrote it all down and posted it online where 99% of my friends could see it. Those that didn't could hear it from them. It worked brilliantly.

I hope for you that you'll soon find the medications that work for your needs. I'm still fighting back a flare-up myself, and have not been put on any treatments yet -- no insurance.

You're not alone. This place is full of those that know exactly what you're up against.

Best of luck to you.

-- Nicole