Anyone else dealing wwith Crohn's Disease?

[Noah930]

Sorry to hear of your Crohn's, Mike. Living with the disease will be a series of ups and downs, as I'm sure the others on this board with it can tell you. But I'd have to echo Tobra's sentiment, on keeping the car. Crohn's is a series of remissions and flare-ups. Hopefully, the flare-ups are few and infrequent. And when in remission, you should be able to live a fairly normal lifestyle. You've spent so much time and energy (and probably cost, too) building up your car. Think about it for a bit--including when you're feeling better--to see if getting rid of it is really what's the right thing to do.

[NY65912]

Thanks Jay,

I went 10 years the last time. Let's hope it's longer than that this time.

Agreed Noah. Now that I'm feeling so much better....I'm back in the saddle baby!

Thanks

[stevepaa]

Great to hear that you are doing wonderful.
I know what you went through.

My son has ulcerative colitis. He lost 40 lbs, went to the hospital for 7 days over Christmas until properly diagnosed as having a reaction to prednisone which debilitated his muscles and he had to crawl to the bathroom. Found a wonderful doctor at UCSF and now two years later has regained his weight and his life.

[NY65912]

Well, here we go again. It looks as though the Crohn's has reared it's ugly head again.

I've been feeling crappy, fatigue and a general malaise.

Now the bad news. I've devloped a perianal abcsess with a fistula.

Let me tell you, you do not know how good you've got it until something likes this sneaks up on you.

The pain is ridiculous. The doc just ran a long wooden q tip from the fistula on the outside into my rectum, straight shot, no local. Holy crap, the worst pain ever.

He is also talking about Remicade,

Anyone have any experience with Remicade?

Sorry for the graphic nature of the post.

[Rot 911]

Mike I know it sounds bad, but at least this is a fistula that can be treated on an outpatient basis with no cutting on your bowels.

As to Remicade, that is the nuclear bomb option of Crohn's. Good results short term, but very dangerous long term side effects in some.

Hopefully you doctor has other options to try.

Hang in there and feel free to drop me a PM or email if you want. Although posting here can help me and others.

[TRE Cup]

Wow- did not see this thread till today. I was diagnosed with ulcerative colitis back in 75. Fought the inevitable for several years with steroids (liquid squirt bottles and pills) for a couple years. The treatments and medication back then certainly did not have good results compared to today. Eventually I could not stand it anymore and ended up with an ileostomy. Life was fine , even with a pouch, no more problems except when i ate too many nuts, corn, or meals with mushrooms: That got me in the hospital a couple times feeling like i would explode from the pain. Luckily it passed and it was back to biz as usual.

Then this past summer, I was starting to get stomach pain ,sweats, and ready to heave sensations. Went to UCLA med and now its Crohns. I can't say that the meds are 100% yet, as the doc has me on mercaptopurine. Which is usually prescribed for something else, but the big plus side effect is anti inflammatory to the small bowel. I am on prednisone course of steroids with tapering off. The pain is gone 100%, but every now and then (depending how bad i am with eating habits) i get that feeling from the stricture. So have to be careful with the diet and try to manage my stress better.
We'll see what the blood tests say next week.

I feel for you man, the pain from this is the worst. Looks like i had this from a very young age , as i would have the major cramp pains intermittently from 5 years old onward.

Wish you all the best and thanks for sharing

[exitwound]

Was diagnosed in 1996 with Ulcerative Colitis. For six years, I was on Imuran, Asacol, and prednisone routinely. By 2001, I was becoming toxic from the medication, and any increases in their dosages would be rough on my liver. At that point, I had my entire colon removed. Before, however, I wanted to die. There was no up. Life was terrible and I literally wanted to die. Unfortunately, there is no single surgery to fix Crohn's the way there is for UC

Just today, I went under again to remove some of the scar tissue that has constricted from the original surgery. I have to go back in three weeks to have it done again.

There are a LOT of Crohn's & UC support groups out there. Look on the net. Find the local group. TALKING to people will help with the depression a little bit. Just knowing there are others who have suffered the same might offer something...and they may be able to help you through it.

Good luck.

[rattlsnak]

Ive been battling with it as well.. Had bleeding ulcers since high school, then diagnosed with UC @ 5 years ago, and now they think it Crohns. My sister has it as well and had several feet of her intestines removed. My issue is more like IBS though. I rarely have pain, but many days I cant go anywhere without being 5 minutes from a bathroom. That severely hampers your life. Ive tried Asacol, etc none of them worked except a form of Symax which only works when it flairs up. Ive had the Fistula also and still have issues because of that..

Keep us posted..

[steveo123456]

I've been a card carrying member of the club for 20+ years. Been through it all including Remicade (nasty stuff). Hang in there. It's a real roller coaster ride at times.

[RoninLB]

Originally Posted by NY65912

Well, here we go again. It looks as though the Crohn's has reared it's ugly head again.

There's a whole Chron's clique in metro that's pretty active. I know someone on the island that has info if you want. They probably know every MD in the area that's worth seeing.

If so e-mail me

[J P Stein]

I have Crohn's. I've been fighting it for about 25 years. I tried all the drugs your on....none worked. I got cut on at age 40 then again at age 50. I have 5 feet of small bowel left from the normal complement of 11 feet. I'm now 64 and overdue.

There are now drugs that work for me, but the bowel is so narrowed that surgery will be along within a year or so, me thinks. I gave myself a shot of Humira just before I saw this thread.....great fun...... in the belly.

I was on Remicade for a year but had to stop due to an unfortunate reaction....till "the swellings" it was working. Humira seems to be working now and it is a more ......I don't know the right word..tollerable...has fewer side effects as it is not a rat enzyme l(no s**t) like Remicade. It is an artificial enzyme.

Frankly, I can't believe your doctor does not have you on either of these drugs.....I'd get another wrench. All are not created equal. Some "practice" more than others. It sounds to me as if your "doctor" is either incompetent or trying to kill you.

A big downside of these drugs is the price. The Remicade infusions were over 4K every 2 months. I'm on the Humira once a week at 1K per pop. Thank God for my union won insurance coverage......that'll piss off some folks.

I've been going to the same Gastroentrologist (you try to spell that) for 25 years and he is top notch. He keeps on top of all the latest treatments. For instance, when the cutter goes in they now only have to remove the narrowed area, not all effected areas because now those areas can be treated with the aforementioned drugs......so I'll loose 6 inches rather than 3 feet again......not enuff left for that crap.

Now LISTEN UP. The above drugs work on the majority of people. They won't make you nauseous like that goddamn Flagal. I lost 35 lbs on that crap about 20 years back....and it didn't help a damn bit. Predizone (steriods) makes you loose bone mass long term......big time and slows dramitically any healing of cuts.....like the big zipper in my belly.....BTDT too & no help.

Another well known Pelicanite is presently on Remicade for his Crohns and tells me he is doing gud on it.

It's your life, take charge.

I'm not usually preachy like this but, dude, you need help.

Humm....more than just the original poster I now see.

[azasadny]

I'm very sorry to hear that you guys are going through this. You have my prayers and support.

[Erakad]

My son has Crohns, at one point he was down to 135 lbs (he's 6-1), he went on a research double blind study at a clinic in Ok City. When all is said and done, he was on the placebo (sigh), but now (as a result of the study) has been placed on azothioprine. I have to admit he appears to be doing much better. Now weighs in at 180 lbs, and doesn't seem to be suffering the affects. I know he's probably in remission, but for now is doing well (at age 25). His docs have talked about remicade, but said it could wait...but once on wouldn't be off it. Hopefully he'll be off a long time. As was said, the down side is the price. For a short time while finishing college he was scrambling to find healthcare insurance....it's tough if you have pre-existing conditions. On the up side, with graduation comes employment and group coverage.

[NY65912]

Thanks to all for the support.

It's the fact in our small P-car community we have the ability to support one another with these types of issues. Having the IROC project keeps me motivated.

Kurt, thanks for "just being there".

Dave, now why do you think it's taking so long for me to complete the IROC project?

Ron, we are overdue for a cup of coffee as I'm off beer for awhile, and thanks.

Art, I know that you have your own issues. You'll be in my thoughts and prayers. Thanks.

Rob, tell your son to hang in there and try to be strong.

I am going to try real hard to "pass" on those strong drugs.

To all yoose others, hey, what can I say but thanks for listening and I'll keep you all in my thoughts and prayers.

I think that the main thing is that we all come here for the same reason and this lends itself to mutual support. I know there are groups for each of our particular ailments out there on the interwebs. But sharing them in this particular venue makes it so much more personal. Basically we "know" each other, from posts, meetings or transactions through this board.

You know I was gonna sell off the IROC project and my Trailex, but I'll hold onto it for awhile longer.

[J P Stein]

Crohns does not go away, it just becomes more or less active. It is slow (but sure) acting.....which is one reason it is so difficult to study. I was told some years back that the only other creature they are able to induce it into is goats. They don't live all that long.

Supposedly, as one ages and ones immune system becomes less active, the disease becomes less active. This seems to be true. I've gotten an extra 4 years on my 10 year cycle......so get old as quickly as you can.

The aggressive treatments are Remicade, Humira, and a new experimental drug...the name escapes me....but you can bet it's not any cheaper.

You can't wait. Damage is being done tho it may not obvious.....like rust, Crohns never sleeps. A low grade fever, a case of the runs......that is your buddy Mr. Crohns talking to ya. By the time you get a blockage ....try to ignore that!......the damage is done and you're looking at the knife. A bowel resection is one of the most miserable experiences you can buy.

[NY65912]

JP,

I was in hospital last year with a blockage. The surgeons wanted to cut but my GI doc was sure that letting my digestive tract rest (no food) for 12 days. Antibiotics, potassium and whatever else were in those bags hanging over my head did work.

My doc believes in slow steps. He feels that I have a "moderate" case. I have had really bad days in the past, but the flares seem to pass relativley fast.

I am deathly afraid of Remicade. The fact that it all but shuts down your immune system is real scarry. I imagine catching a cold and checking out permanantly, how about the flu? What do you do? Sequester yourself?

I'm now 54, hopefully this things slows up as we get older.

I think my next course is to bolster the doc's treatment with seeing a nutrionist.

Guys, any experience with a nutrionist?

[TRE Cup]

I haven't made the time (yeah i know contributing to my own problems ) but a friend's wife has this bad and she has been going with the nutrionist route and is much better

There is a whole list of foods we should not be eating , so if we follow the guidelines the flare ups are much less severe when / if they happen. I have been more careful on what i eat, chew slowly and patiently and its been much better for me since the recent flare up with the crohn's. Everytime i cheat (corn products, mushroom, too much lettuce) i know it

[exitwound]

Friend of mine has gone the way of PRObiotics, and has had remarkable response to it.

[J P Stein]

I too have a moderate case. I know one fella that's had it bad.....fistulas & the whole enchilada.....it's best not to go there.

The enzyme treatments do not shut down your immune system. I get a few colds, flu, infections, yada and when I do they heal just like normal folk......I just got over a cold. It lasted a week.



Steve Weiner is on Remicade. Ask him how he's doing with it. I'm on twice the normal dose of Humira and I'm doing pretty well....all things taken into account.

After a year, Remicade gave me drug induced Lupus (I think) ....the bad kind. I quit taking the stuff and it went away in a few months. It was not all peaches & cream for me.

If you want to be afraid of something, go with steriods. They hammer your immune system and cause bone mass loss. It took me months for the surgery incisions to heal after being on Predizone for 6-7 years. Heavy doses make you nuts.

I got no reason to BS ya. Just telling you what I have experienced with our friend and what I do to try to keep ahead of it.

[MadameButterfly]

Hello Mike. My husband is a regular contributor here and told me about your thread so I hope you don't mind my jumping in.

My adult daughter has had Chrons since grade school - horrifically painful and debilitating. We tried everything including steroids, hyperbaric oxygenation, and an intravenous backpack that totally bypassed her digestive system.

Finally, in her mid 20's, her former pediatric gastroenterologist told her about a diet that was having excellent results in the majority of the kids he was working with.

The book explaining it has been around for decades: Breaking the Vicious Cycle by Elaine Gottschall. The basic premise is that most persons suffering from bowel disorders have difficulty digesting complex carbohydrates.

My daughter followed Gottschall's Simple Carbohydrate Diet and the difference in her health has been incredible. She's totally off all meds, eats whatever she wants and only follows the diet if she senses she's overdone it or is under a lot of stress. She's avoided several flare-ups this way and is just going on with her life.

It's worth a look-at