Crohn's Disease

mets2k · January 10th, 2007, 02:54 AM

Does anyone here have it? Just curious. I was first diagnose with Ulcerative Colitis in '95. Stayed in the hospital for a week. Took my medication and was fine for around eight years. Then in '03 I got very sick again. This time was much worse. I was in & out of the hospital I don't know how many times. Doctors put my on Predisone (steroids). It would help but when they'd taper me off I'd just get sick again. Finally I gave in. I had to have surgery. Had my entire large intestine removed in January of '04. I had to wear an ostomy bag till April. Had surgery to have that removed. My surgeon thought everything would be fine.

I was okay for a while. Then same thing. Terrible stomach pain & dehydration. I was in & out of the hospital over & over again. Doctors did x-ray after x-ray. Everyting possible. They couldn't figure out what was wrong. Finally last year they found I now have Crohn's Disease which is very similar to Ulcerative Colitis. I was having so much stomach pain that my surgeon did exploratory surgery on August 5th. He didn't find anything. That's what was very frustrating to me.

On September 14th I was real bad off again. Had to go back to the ER. I was so bad I was in for almost two months.

Most recent hospital stay was Dec. 24-31. What a way to spend the holidays huh? Thankfully I'm doing better right now but it's only because of the Predisone. I know when they taper me off I'll just get sick again. Same thing over & over again. I'm just about had enough.

I'm seeing a new doctor today. I've heard he's supposed to be the best here in Oklahoma. Sure hope he can help me. It's been a very tough four years for me.

Does anyone else here have Ulcerative Colitis and/or Crohn's Disease? Let me know. I understand if you don't want to post in this thread. If you want you can pm me.

Nocahoma · January 10th, 2007, 01:41 PM

No, but I know it's not very pleasant. Autoimmune disease where the body's immune systems attacks the nerves (like in MS and ALS), but in this case it is focused on the innervation of the digestive tract. You lose peristalsis and things, well, "back up." I'm sure that plays havoc with nutritional absorption, etc.

Right now, steroids like Prednisone are the only way of relieveing many autoimmune disorders. They act by inhibiting the activity of AP1, which is a Transcription Factor that up-regulates the production of pro-inflammatory cytokines and other immune modulators. Those cytokines are produced and induce inflammation in your intestines. Steroids block the activity of AP1 and therefore reduce the production of the pro-inflammatory cytokines.

The problem with steroids is that you can't stay on them for long periods. That's why your Drs. keep cycling you on & off of them. There are new treatments all the time for MS and ALS -- perhaps the cytokine-based ones of those might one day be used to treat Crohn's Disease.

Good luck and best of health to you, Metsie!

Tex · January 12th, 2007, 02:08 AM

I had a friend/roommate in college that had Crohns. He had to live his life around it, had to be careful what he ate and make sure there was always a facility near by, but other than that he was able to live a normal college life. It was not easy, and at times embarrassing but he had a good sense of humor about it. He had avoided surgery, but was on several anti-inflammatory meds which had side effects but nothing too serious.

I am sure the Doc's are working on what meds will work best for your case Mets, once you get that down things will be a lot better for you. In the mean time hope you start to feel better. Chrohns is is a rough road, but once the Docs can get it under control things will look up

mets2k · January 20th, 2007, 07:05 AM

Thanks Noc & Tex.

Noc,

Glad to see you made it back to FanHome and back as Braves Mod.

health update:

I went to another specialist on January 10. Asked me a lot of questions about what's been going on and just by that (and my recent chest x-rays)... he knows right away that I do not have Crohn's Disease (like my other doctors were telling me). They've been treating me for the wrong thing for who knows how long. Unbelieveable!

Here's what I do have though...

1) Sclerosing Cholangitis
- my primary problem

2) Bacterial Overgrowth in small bowel

3) Adrenal Insufficiency
- due to long term prednisone use

He wants my slides from my surgery I had back in December of '04 to determine what to do next. He's allowing me to taper off the predisone by 5mg/week until I get to 15mg. I was on 40mg. Thankful for that. Just hope I don't get sick again while doing so. He also put me on two new prescriptions. Metronidazole (flagyl) & Clarinex Reditab. He also wants me to go back on Urso which I was taking for a while until my former doctor for whatever reason took me off of it.

Ever since I have been taking the new medication I've been having less stomach pain. I'm praying it's the flagyl that's doing it and not predisone (steroids) because I have to get off of that soon. Too many side effects. I haven't felt this good in years.

Nocahoma · January 21st, 2007, 11:32 AM

Well, the Flagyl is to get things moving down there (so to speak) by encouraging peristalsis, but I'm not sure why Clarinex is related to your problems. That's an allergy-grade antihistamine. It's possible that this could be used to combat inflammation in your plumbing, but that's the first I have heard of it.

As for the AAD, I wouldn't be surorised to hear your Doc suggesting you take some probiotics, or at least eat some active culture yogurt. You gotta get those bugs balanced!

It's amazing how much our intestinal flora affect our daily lives. People are making a lot of money selling "digestive health" yogurts and supplements, but all you really need is store-brand yogurt that still contains active cultures (check the labels).

ganja · January 21st, 2007, 12:55 PM

David Garrard of the Jacksonville Jaguars has Crohn's I think.

Shea Hey Kid · January 21st, 2007, 04:30 PM

Oh Jeez Mets2K, sorry to hear about all this happening. I hope this new doctor gets you on the right track.

mets2k_fasthost_tv · March 7th, 2007, 10:13 PM

Thanks Shea Hey.

This just in... I personally attacked Fanhome on Myspace and called administration names and didn't think anything would come from it.

AlexdeLarge · March 8th, 2007, 11:50 AM

Had a buddy in high school who had it, (bad), he finally killed himself about 10 years ago

Nocahoma · March 8th, 2007, 11:52 AM

"Finally?" Geez, Paulie -- you make it seem like he needed to.

Anyway -- the above poster is 437 years old, so anyone in high school with him must have had a pretty long life, despite having Crohn's.

AlexdeLarge · March 12th, 2007, 09:44 AM

Just stating the facts, he did indeed off himself, and that was the reason. It's not a pretty story, but it's the truth none the less.

Edge · March 16th, 2007, 10:09 PM

Quote:

Originally Posted by mets2k

Does anyone else here have Ulcerative Colitis and/or Crohn's Disease? Let me know. I understand if you don't want to post in this thread. If you want you can pm me.

My brother has ulcerative colitis. I cried when he explained to me what he has. His life has been difficult.

He was on steroids, but now is using Nicotine patches - which seem to help reduce the pain and not having to go as often to the bathroom.

It truly is a horrible disease.

Ninersrule · March 17th, 2007, 01:25 AM

My wife has Crohn's, she has lived with it for years. Her GI doctor
tried everything- methotrexate, and steroids, injections, she even
tried an arthritis medication which took 3 hours to infuse. She did that
for about every 6 weeks to 3 months for over 2 years.

Nothing she did or tried worked in the long run. It affected our physical
relationship, her work and most of her just our home life. The only
time she did not suffer much at all was when she was pregnant.

Then finally the doctor threw up his hands and said there is nothing more we
can do, we have to do surgery- which of course is the very last resort.
I am happy to say that today is the 3 year anniversary of her surgery,
and she has been pain free and symptom free ever since.

Do what you can M2K to cope, but don't let it go too long, and good luck!!

Nocahoma · March 17th, 2007, 08:26 AM

Interesting. So, it was just that one section of her colon that was under attack? I didn't know that it could be so localized and never spread.

January 10th, 2007, 02:54 AM	#1 (permalink)
mets2k Banned Join Date: Nov 2006 Location: Oklahoma City, OK Posts: 429	Crohn's Disease Does anyone here have it? Just curious. I was first diagnose with Ulcerative Colitis in '95. Stayed in the hospital for a week. Took my medication and was fine for around eight years. Then in '03 I got very sick again. This time was much worse. I was in & out of the hospital I don't know how many times. Doctors put my on Predisone (steroids). It would help but when they'd taper me off I'd just get sick again. Finally I gave in. I had to have surgery. Had my entire large intestine removed in January of '04. I had to wear an ostomy bag till April. Had surgery to have that removed. My surgeon thought everything would be fine. I was okay for a while. Then same thing. Terrible stomach pain & dehydration. I was in & out of the hospital over & over again. Doctors did x-ray after x-ray. Everyting possible. They couldn't figure out what was wrong. Finally last year they found I now have Crohn's Disease which is very similar to Ulcerative Colitis. I was having so much stomach pain that my surgeon did exploratory surgery on August 5th. He didn't find anything. That's what was very frustrating to me. On September 14th I was real bad off again. Had to go back to the ER. I was so bad I was in for almost two months. Most recent hospital stay was Dec. 24-31. What a way to spend the holidays huh? Thankfully I'm doing better right now but it's only because of the Predisone. I know when they taper me off I'll just get sick again. Same thing over & over again. I'm just about had enough. I'm seeing a new doctor today. I've heard he's supposed to be the best here in Oklahoma. Sure hope he can help me. It's been a very tough four years for me. Does anyone else here have Ulcerative Colitis and/or Crohn's Disease? Let me know. I understand if you don't want to post in this thread. If you want you can pm me.

March 7th, 2007, 10:13 PM	#8 (permalink)
mets2k_fasthost_tv Banned Join Date: Mar 2007 Posts: 2	Thanks Shea Hey. This just in... I personally attacked Fanhome on Myspace and called administration names and didn't think anything would come from it. Last edited by TITANFAN; March 8th, 2007 at 03:43 AM.

March 17th, 2007, 01:25 AM	#13 (permalink)
Ninersrule Member Join Date: Nov 2006 Location: C-Bus/Buckeye Country Posts: 120	My wife has Crohn's, she has lived with it for years. Her GI doctor tried everything- methotrexate, and steroids, injections, she even tried an arthritis medication which took 3 hours to infuse. She did that for about every 6 weeks to 3 months for over 2 years. Nothing she did or tried worked in the long run. It affected our physical relationship, her work and most of her just our home life. The only time she did not suffer much at all was when she was pregnant. Then finally the doctor threw up his hands and said there is nothing more we can do, we have to do surgery- which of course is the very last resort. I am happy to say that today is the 3 year anniversary of her surgery, and she has been pain free and symptom free ever since. Do what you can M2K to cope, but don't let it go too long, and good luck!! __________________ "You may find that having, is not so pleasing a thing as wanting. It is not logical, but it is often true." -Spock from "Amok Time"

January 10th, 2007, 01:41 PM	#2 (permalink)
Nocahoma Moderator Join Date: Dec 2006 Posts: 1,238	No, but I know it's not very pleasant. Autoimmune disease where the body's immune systems attacks the nerves (like in MS and ALS), but in this case it is focused on the innervation of the digestive tract. You lose peristalsis and things, well, "back up." I'm sure that plays havoc with nutritional absorption, etc. Right now, steroids like Prednisone are the only way of relieveing many autoimmune disorders. They act by inhibiting the activity of AP1, which is a Transcription Factor that up-regulates the production of pro-inflammatory cytokines and other immune modulators. Those cytokines are produced and induce inflammation in your intestines. Steroids block the activity of AP1 and therefore reduce the production of the pro-inflammatory cytokines. The problem with steroids is that you can't stay on them for long periods. That's why your Drs. keep cycling you on & off of them. There are new treatments all the time for MS and ALS -- perhaps the cytokine-based ones of those might one day be used to treat Crohn's Disease. Good luck and best of health to you, Metsie!

January 12th, 2007, 02:08 AM	#3 (permalink)
Tex Member Join Date: Jan 2007 Location: K-Town Germany Posts: 15	I had a friend/roommate in college that had Crohns. He had to live his life around it, had to be careful what he ate and make sure there was always a facility near by, but other than that he was able to live a normal college life. It was not easy, and at times embarrassing but he had a good sense of humor about it. He had avoided surgery, but was on several anti-inflammatory meds which had side effects but nothing too serious. I am sure the Doc's are working on what meds will work best for your case Mets, once you get that down things will be a lot better for you. In the mean time hope you start to feel better. Chrohns is is a rough road, but once the Docs can get it under control things will look up

January 20th, 2007, 07:05 AM	#4 (permalink)
mets2k Banned Join Date: Nov 2006 Location: Oklahoma City, OK Posts: 429	Thanks Noc & Tex. Noc, Glad to see you made it back to FanHome and back as Braves Mod. health update: I went to another specialist on January 10. Asked me a lot of questions about what's been going on and just by that (and my recent chest x-rays)... he knows right away that I do not have Crohn's Disease (like my other doctors were telling me). They've been treating me for the wrong thing for who knows how long. Unbelieveable! Here's what I do have though... 1) Sclerosing Cholangitis - my primary problem 2) Bacterial Overgrowth in small bowel 3) Adrenal Insufficiency - due to long term prednisone use He wants my slides from my surgery I had back in December of '04 to determine what to do next. He's allowing me to taper off the predisone by 5mg/week until I get to 15mg. I was on 40mg. Thankful for that. Just hope I don't get sick again while doing so. He also put me on two new prescriptions. Metronidazole (flagyl) & Clarinex Reditab. He also wants me to go back on Urso which I was taking for a while until my former doctor for whatever reason took me off of it. Ever since I have been taking the new medication I've been having less stomach pain. I'm praying it's the flagyl that's doing it and not predisone (steroids) because I have to get off of that soon. Too many side effects. I haven't felt this good in years.

January 21st, 2007, 11:32 AM	#5 (permalink)
Nocahoma Moderator Join Date: Dec 2006 Posts: 1,238	Well, the Flagyl is to get things moving down there (so to speak) by encouraging peristalsis, but I'm not sure why Clarinex is related to your problems. That's an allergy-grade antihistamine. It's possible that this could be used to combat inflammation in your plumbing, but that's the first I have heard of it. As for the AAD, I wouldn't be surorised to hear your Doc suggesting you take some probiotics, or at least eat some active culture yogurt. You gotta get those bugs balanced! It's amazing how much our intestinal flora affect our daily lives. People are making a lot of money selling "digestive health" yogurts and supplements, but all you really need is store-brand yogurt that still contains active cultures (check the labels).

January 21st, 2007, 12:55 PM	#6 (permalink)
ganja Member Join Date: Jan 2007 Location: North Carolina Posts: 194	David Garrard of the Jacksonville Jaguars has Crohn's I think.

January 21st, 2007, 04:30 PM	#7 (permalink)
Shea Hey Kid Member Join Date: Nov 2006 Location: Central Jersey Posts: 18	Oh Jeez Mets2K, sorry to hear about all this happening. I hope this new doctor gets you on the right track.

March 8th, 2007, 11:50 AM	#9 (permalink)
AlexdeLarge Veteran Member Join Date: Feb 2007 Location: England Posts: 1,409	Had a buddy in high school who had it, (bad), he finally killed himself about 10 years ago

March 8th, 2007, 11:52 AM	#10 (permalink)
Nocahoma Moderator Join Date: Dec 2006 Posts: 1,238	"Finally?" Geez, Paulie -- you make it seem like he needed to. Anyway -- the above poster is 437 years old, so anyone in high school with him must have had a pretty long life, despite having Crohn's.

March 12th, 2007, 09:44 AM	#11 (permalink)
AlexdeLarge Veteran Member Join Date: Feb 2007 Location: England Posts: 1,409	Just stating the facts, he did indeed off himself, and that was the reason. It's not a pretty story, but it's the truth none the less.

March 17th, 2007, 08:26 AM	#14 (permalink)
Nocahoma Moderator Join Date: Dec 2006 Posts: 1,238	Interesting. So, it was just that one section of her colon that was under attack? I didn't know that it could be so localized and never spread.