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I've got an IBD :(
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ThunderPoit
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2008-08-23, 16:56

So been having a quite a bit of a...umm, "stomach" problem for the past couple of months. Thought it was food poisoning at first, so the dr threw some antibiotics at the problem. Antibiotics did nothing except to give me a bad case of oral thrush (yeast infection). After having me go thru the horror of collecting a few "samples" for them, they decided that the next step was to shove a camera up there and take a look around.

Within 5 minutes, they told me it looked like I have Ulcerative Colitis. They took some biopsies to be certain. They gave me some pills right away for it and the results have been incredible. As far as the problems I was having before, they seem to have all but gone away. No more cramps, no extreme sudden urges to find a toilet eight times a day, I feel wonderful.

The downside is, I'm starting to feel the side effects of the drugs they have me on. They gave me Prednisone and Asacol. I have to take four of one and six of the other every day. The one that has me the most worried is the Prednisone. It can cause issues with muscle fatigue and joint pain. I was out doing some yardwork today and my arms and legs were killing me. My foot felt like I had sprained it and I needed to put it on ice so I could walk on it.

I was looking up some info on this drug, and it seems absolutely horrible. It can cause weight gain, hair loss, and acne as well as the muscle/joint pain I mentioned earlier. All this while supressing my immune system to reduce the inflamation from my colitis. I have a follow up appt. with my Dr. next month and I'm going to ask him how soon I can be taken off of it. I dont know what they will be able to do for me, but I've read too many horror stories about people who had to be on it for months on end and some of the effects they had for me not to be concerned.

Anyway, aside from having to take ten pills a day, they also want me on a low fiber diet, which really sucks. The only way I can eat my veggies now is if I eat them cooked, which I hate. I also cant eat many cereals or whole grain bread. The worst part is that I can't eat popcorn! No popcorn! I love popcorn

Anyway, not sure what I was looking for here, just needed someplace to vent a bit. Thanks for reading.
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AWR
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2008-08-23, 17:19

Sorry to hear that , tp.
Keep your chin up, popcorn notwithstanding.
There's always the picnic basket!
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ronmexico
Senior Member
 
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2008-08-23, 17:43

Prednisone is a serious drug and should be taken with caution. Hopefully you are only on it during "flair ups."
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thegeriatric
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Join Date: May 2006
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2008-08-23, 18:13

That's bad luck ThunderPoit.

Popcorn is highly overrated anyway!.............munch munch munch.........Shhhhhhh he'll hear you for crying out loud suck the damn stuff.
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Windswept
On Pacific time
 
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2008-08-23, 18:34

Well, perhaps you are young enough that you can get this under good control, now that you know what the problem is.

To keep your joints healthy, Costco.com has Glucosamine, Chondroitin, MSM in powder form. You can add a scoop to a glass of water each day. Might help. It is slow-working, but it does work, doctors say; and since you are just starting with all this, your joints are probably in good shape at this point.

I'm sorry you're having to go through all this.

This lady who teaches computer classes at the rec center just found out that she has stage three bladder cancer. I just can't believe it got so far along before she detected any symptoms. She just started chemotherapy. I sure hope it works. She's in her 70s though, but seemed healthy otherwise.

So do everything you can to figure out how to eat well with those restrictions. You might look for a support group that could help you along. I wish you well.
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ThunderPoit
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2008-08-23, 18:38

I dont know if it is safe to really take anything for the joint pain, as its a side effect of the other medicine. I'll have to ask my doc when I see him next.
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Windswept
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2008-08-23, 18:43

Quote:
Originally Posted by ThunderPoit View Post
I dont know if it is safe to really take anything for the joint pain, as its a side effect of the other medicine. I'll have to ask my doc when I see him next.
Good point.
  quote
judeobscure
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2008-08-23, 18:55

I hope you get a second opinion.
Through first hand experience with my mother prednisone is NASTY stuff.
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ThunderPoit
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2008-08-23, 19:29

Also, as if the side effects weren't bad enough, the pills taste like crap and leave a horrid aftertaste
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scratt
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2008-08-23, 21:51

Wow.. Sorry to hear about your problems..

I just read up on Prednisone and the list of minor and serious side effects makes me wonder how the hell some of these things get approved..

The kick in the teeth being bad withdrawal symptoms also! Even more ironic is that it will cause stomach pain!

If they are not going to get you off this fast then I'd start looking at homeopathic options... anything but continue to be poisoned by pharmaceutical companies.. From what I have read, purely out of curiosity this morning, they must think you have a fairly acute case if they are prescribing Prednisone. Perhaps they are being cautious.. But leaving it a month before seeing you again seems weird also.

I would at least get a second opinion.

'Remember, measure life by the moments that take your breath away, not by how many breaths you take'
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MBHockey
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Join Date: May 2005
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2008-08-23, 23:33

Prednisone is the devil! Not really, but I had to take it when I got a really bad case of Poison Ivy when I was younger. I had it all over my face, arms, back, eyelids, ears, neck, chest, and legs. It also didn't help that I was just leaving for 3 weeks of hockey camp in Canada!

Anyway, I was on that for a week I think and all I can remember is that it made me SUPER hungry. I mean, I was eating 2-3 times as much per day as I normally ate (probably also related to the 6 hours of ice time per day too though ). But I just was always famished and never once felt the satisfying "full"feeling when I was done eating.

The *good* news here is that I didn't experience any of those other side effects you mention, so maybe you won't either.

Either way, definitely get a second opinion. Good luck.

Last edited by MBHockey : 2008-08-24 at 12:21.
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drewprops
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2008-08-23, 23:49

Life always traps you between a rock and a hard place... that just plain sucks. With the inflammation reduced, you'll *have* to eat what your body allows and adjust your exercise to accommodate, yes? I think that you'll figure this out.

It just may force you to eat french fries and hamburgers all the time.....

Steve Jobs ate my cat's watermelon.
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leachboy
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Join Date: May 2006
 
2008-08-23, 23:50

I'm sorry to hear your news. I was diagnosed with gastroduodenal Crohn's Disease (another IBD) seven years ago, after a few years of being treated erroneously for acid reflux. I don't think that they ever use prednisone for long-term maintenance therapy. I've been on it three times--each time to treat a flare. It did give me some side effects, and while they were somewhat bothersome, they weren't serious and overall they were well worth it for the benefit that I saw.
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zippy
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2008-08-24, 01:32

Well ThunderPoit, I feel your pain. All of them.

I was diagnosed with Ulcerative Colitis earlier this year (Mid May) after suffering the same symptoms for about 5-6 weeks. I didn't go in until I noticed that I was passing a healthy dose of bright red blood when I went to the bathroom. That was enough for them to immediately resort to a colonoscopy for diagnosis, so I didn't have to bother with any misdiagnosis/mistreatments.

That said, they started me on Asacol and Entocort right away with much confidence. So while I was bummed about the diagnosis, I was also hopeful for a quick remission (for those who don't know, there is no cure short of removing the colon). Unfortunately, the Asacol and Entocort didn't have any positive effects for me.

In an effort to bolster the Asacol and Entocort, I was started on Prednisone at 60 Mg/day. I started feeling better within just a few days, but then started having some of the standard Prednisone side effects - especially fluid build up on the knees. For that reason, the doctor told me to reduce to 40 Mg/day, and we were confident that it would continue to help the other meds to bring things under control.

To my dismay, once I reduced to 40 Mg on the Prednisone, all progress stopped. More side effects started to creep up though, so we were not interested in increasing the dosage again. And at this point, the doctors decided that the Asacol and Entocort weren't going to work even if we could bring things under control. (Incidentally, my GI and GP both dismissed any benefits of modifying my diet - an attitude that I disagree with to a point).

The next plan was to get me on some 6-Mercaptopurine which is an immune system suppressor. Unfortunately, this particular drug takes 3 months or more to build up in the system to the point where it is really effective. Soon after I started it, I developed a sinus infection and I don't know what else - I felt like I had the flu. I had to stop the 6-MP while I went on an antibiotic. In the meantime, I was running out of the other drugs that weren't really helping anyway. I ran a 103 degree temp for about 2 weeks - requiring that I alternate ibuprofen and acetaminophen about every 4-6 hours - which has left my stomach reeling. Add to that that I think the Prednisone was really taking a toll on me.

So we started reducing the Prednisone - going to 20 Mg/day for a handful of days, and then down to 10, where I'm at right now (will be going to 5 on Monday). The less prednisone I have been taking, the better over all that I have been feeling. Plus I had to take a trip to the ER to get rid of the headache after it started making me throw up. Since then, I've been able to keep the headache away. Yay!

So back to the Ulcerative Colitis. I started a series of 3 infusions of Remicade - a drug initially developed for Rheumatoid Arthritis, but clinically demonstrated to also help Colitis so that it was approved for such use by the FDA. The goal of the Remicade is to get the Colitis under control while the 6-MP has a chance to build up in my system. So far so good on that front.

In the meantime - during the point when I was at the lowest of lows for how I felt this summer (like SHIT!!- dying) I started to implement at least some of the protocols of a diet that I found online. Basically, I eliminated all Dairy and all Gluten and all legumes from my diet. The other parts of the plan that I didn't necessarily follow were: do food allergy testing and eliminate allergens, don't eat fruit with your meal - eat it first or totally separate (the theory being that it will start to rot in your belly if it has to wait for other things to digest), and don't wash your food down - you can have water before, or 1 hour after (the premise here is that it dilutes the stomach acid too much). There were a few other things, like drinking only water, and doing some herbal supplements and probiotics (bought from the individual who came up with the plan at a cost of about $1,000 over 3 months).

I actually think I started to see some benefit from this after only a week and a half, but I can't be sure yet. But then I broke down and had to have a cheesburger or two, and later some pizza, and I haven't seen any negative effect yet. In the long run, I think I'll have to play with things a bit and see what I can and can't tolerate, but the "no dairy, and no gluten" seems to be a common thread I keep hearing. I don't think I can follow that kind of diet forever - unless I have to.

Sorry for the hijack, that's not my intention. I just hoped you might glean something from my experience.

To sum up, I'd say that I'm not totally down on Prednisone if it works for you - you just don't want to stay on it for any longer than you need. And I really hope that the Asacol does what it's supposed to for you, I wish it did for me. But if it doesn't, hang in there, there are other options.

Oh, and I decided long ago to spare everyone from documenting things in Drew's Poo Log. Suffice to say that when your colon is an inflamed, bloody mess - you can produce poo and gas that will curl your nose hairs.

Best of luck ThunderPoit, I hope your path to resolution/remission is faster and less painful than mine.

Do you know where children get all of their energy? - They suck it right out of their parents!
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ThunderPoit
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2008-08-24, 02:17

Wow. Reading your story makes mine sound like a case of the sniffles.
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Mugge
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Join Date: Jan 2005
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2008-08-24, 04:50

Wow. Never heard of this ailment before. You have my sympathy, Zippy and ThunderPoit. Why the hell dairy products and gluten is inflammatory to the guts is kinda beyond me. But then, I'm no doctor.

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Elysium
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2008-08-24, 21:27

Sorry to hear about your cases zippy and Thunderpoit. I was diagnosed with Crohn's disease about 14 years ago and have been coping with it ever since. It's an uphill battle, but I wish you guys the best of luck. I've had the same medical cocktail moe or less of prednisone, cipro, Remicaid, mercaptopurine and so forth. While I have never have had much luck with totally alleviating my symptoms I take the appropriate steps to avoid the big C's. Cancer and colostomy bag.

Formerly known as cynical_rock
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billybobsky
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Join Date: May 2004
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2008-08-24, 21:59

Quote:
Originally Posted by zippy View Post
In the meantime - during the point when I was at the lowest of lows for how I felt this summer (like SHIT!!- dying) I started to implement at least some of the protocols of a diet that I found online. Basically, I eliminated all Dairy and all Gluten and all legumes from my diet. The other parts of the plan that I didn't necessarily follow were: do food allergy testing and eliminate allergens, don't eat fruit with your meal - eat it first or totally separate (the theory being that it will start to rot in your belly if it has to wait for other things to digest), and don't wash your food down - you can have water before, or 1 hour after (the premise here is that it dilutes the stomach acid too much). There were a few other things, like drinking only water, and doing some herbal supplements and probiotics (bought from the individual who came up with the plan at a cost of about $1,000 over 3 months).
Wow. Your story sounds like medicine gone seriously awry. Mercaptopurine is a nasty piece of work -- non-specific as hell, potential carcinogen -- if you know any biochemistry the reason is clear -- it royally fucks up DNA and RNA synthesis, and this isn't a good thing... The problem with our current knowledge of auto-immune disorders is that the treatments tend to take out a good deal of the function of the immune system since we are still very much in the sledge hammer era of chemotherapy. Have you heard, or considered Low dose naltrexone... while very few (no) proper studies have shown its efficacy -- there is plenty of word of mouth evidence that at the very least it may be something to consider...

Also, checking for allergies makes sense as does removal of likely sources of lower intestine allergic reactions (read plant material) but NOT drinking water because it "dilutes" the acid too much is one of the more absurd things I have ever heard. The effect of adding solid food to your stomach is far more significant than adding water.
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scrouds
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Join Date: Mar 2005
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2008-08-24, 22:29

That really sucks dude. If its really bothering you, call the office and have them move your appointment up. If its not working, don't wait, you know?
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drewprops
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Join Date: May 2004
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2008-08-24, 22:33

I suspect that I may also have some sort of bowel related syndrome/disease, and will begin pursuing a diagnosis at my next physical next month.

I find it interesting how common the disease actually is... I mean, I know a girl in her mid-20s who has Crohn's, and several girls who have gluten intolerance. I would suspect that bowel disease tracks with ethnicity, and perhaps even nationality.

Totally devoid of proof, I'm blaming high fructose corn syrup.... I mean, it's the main ingredient in Bachelor Chow.

Steve Jobs ate my cat's watermelon.
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Schnauzer
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2008-08-25, 06:03

ThunderPoit, Prednisone is the worst drug ever. When I first was diagnosed with leukemia and they put me on it for 29 days taking 100mg a day, that really sucked! Then when I stopped they just dropped me from 100mg to 0mg, that really sucked! I fucking hate Prednisone so much, I never want to take that shit again.

If you can read this this, please send to an admin, i am blocked and cant post....
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zippy
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2008-08-25, 10:27

Quote:
Originally Posted by ThunderPoit View Post
Wow. Reading your story makes mine sound like a case of the sniffles.
Sorry, that was not the intent of my post. You most certainly have something much worse than the sniffles.

The funny thing is that I was very close to starting this thread more than a few times these past few weeks thinking that maybe someone else on here had Colitis and could offer some wisdom. So when you did it, I jut took the opportunity to vent my own frustrations.

I'm really very happy for you that you seem to be responding to the 1st level drugs - though Prednisone is not always considered 1st level. Hopefully they can get you off of the Prednisone soon and the Asacol will do its thing for you - I wish it had for me. How much Prednisone are you on?

Here's a link to the Colitis/Crohns treatment plan I mentioned: http://www.drdahlman.com/pdf/DrDahlm...hnsColitis.pdf

I don't agree with everything he says in here, but some of it makes sense.

Do you know where children get all of their energy? - They suck it right out of their parents!
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pscates2.0
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Join Date: May 2004
 
2008-08-25, 10:40

Wow, what an eye-opening thread. I feel your pain, Thunder and zippy (sounds like a TV show ).

It's a shame those pills are causing as much grief as the thing they're supposed to be fixing or addressing. But that's, sadly, often the case.

I'm trying my damnedest to get through life prescription/pill-free. At 39, so far so good. Knock on wood...

In everyone I know, it just seems to start this freaky cycle of side-effects or other things to address, once they've started.



I hope things improve for you.
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zippy
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2008-08-25, 10:43

Quote:
Originally Posted by Mugge View Post
Wow. Never heard of this ailment before. You have my sympathy, Zippy and ThunderPoit. Why the hell dairy products and gluten is inflammatory to the guts is kinda beyond me. But then, I'm no doctor.

The reason dairy is a problem is that it is notoriously hard to digest the proteins. And things that don't get broken down properly tend to be treated as unfriendly by the digestive system - or so I've read.

As for gluten - including all wheat, barley and oat products - I think this one sometimes is a bit assuming. I know that there are many people who are allergic, and I know there is a lot of anecdotal evidence at least that shows gluten to be a problem for things like autism, and supposedly crohns and colitis. What I don't know is whether someone who has say colitis, but is definitely not allergic to gluten, should really still have a problem with it. And in my experience, the recommendations to eliminate these things come mostly from holistic practitioners and other sufferers, and not from your standard medical doctors.

Personally, I think there is an alternative to eliminating them that seems reasonable: enzyme therapy. This would entail taking some supplemental digestive enzymes before you eat that would help to break down the food and allow it to be digested properly. That way you can still eat the things you like, and hopefully not suffer any consequences. I'm debating trying this method at some point.

Do you know where children get all of their energy? - They suck it right out of their parents!
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Luca
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Location: Minnesota
 
2008-08-25, 10:47

As I was reading your story, zippy, I started to wonder if the disease or the meds were causing the most problems. That sounds terrible.

I hope you can pull through and find something that works for you (both you and ThunderPoit).
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zippy
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2008-08-25, 10:48

Quote:
Originally Posted by Elysium View Post
Sorry to hear about your cases zippy and Thunderpoit. I was diagnosed with Crohn's disease about 14 years ago and have been coping with it ever since. It's an uphill battle, but I wish you guys the best of luck. I've had the same medical cocktail moe or less of prednisone, cipro, Remicaid, mercaptopurine and so forth. While I have never have had much luck with totally alleviating my symptoms I take the appropriate steps to avoid the big C's. Cancer and colostomy bag.
Sorry to hear that. If I had to have one, I'd rather have colitis than crohn's, so you definitely have my sympathy. I'm curious if you've ever tried any of the dietary approaches to treatment and what your results were.

When I first was diagnosed, my reaction was "damn, gettin' old kinda sucks" (and I'm really not that old). But then I did some reading and found out that colitis is typically diagnosed between the ages of 15 and 30! So now I feel lucky that I made it all the way to 37 5/6ths before I developed it.

Do you know where children get all of their energy? - They suck it right out of their parents!
  quote
zippy
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Join Date: Jul 2005
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2008-08-25, 10:52

Quote:
Originally Posted by billybobsky View Post
Wow. Your story sounds like medicine gone seriously awry. Mercaptopurine is a nasty piece of work -- non-specific as hell, potential carcinogen -- if you know any biochemistry the reason is clear -- it royally fucks up DNA and RNA synthesis, and this isn't a good thing... The problem with our current knowledge of auto-immune disorders is that the treatments tend to take out a good deal of the function of the immune system since we are still very much in the sledge hammer era of chemotherapy. Have you heard, or considered Low dose naltrexone... while very few (no) proper studies have shown its efficacy -- there is plenty of word of mouth evidence that at the very least it may be something to consider...

Also, checking for allergies makes sense as does removal of likely sources of lower intestine allergic reactions (read plant material) but NOT drinking water because it "dilutes" the acid too much is one of the more absurd things I have ever heard. The effect of adding solid food to your stomach is far more significant than adding water.
I don't know squat about biochem, so thanks for the info. I was a bit reluctant to do any immune system modulator given my history of sinusitis, but at this point, I was almost willing to do anything to feel better. I'll look into the nalrtexone and talk to my doctors about it. Unfortunately, if it hasn't actually been approved for this specific use by the FDA, some doctors won't go there. It's worth discussing though.

Do you know where children get all of their energy? - They suck it right out of their parents!
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zippy
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2008-08-25, 10:57

Quote:
Originally Posted by Luca View Post
As I was reading your story, zippy, I started to wonder if the disease or the meds were causing the most problems. That sounds terrible.
Exactly. I was at that point where I really couldn't tell and even if it meant that I wasn't taking anything to actively battle the colitis, I was looking forward to getting off as many things as possible - especially the Prednisone.

My other fear is that this is what life might be like for me on an immuno-modulator. I've always been one of those that will catch what is going around, and with 3 kids, there's plenty going around.

So far, I've felt pretty good for the last 5 or so days = no diarrhea and no bleeding. And I'm about a week or two away from being prednisone free.

Do you know where children get all of their energy? - They suck it right out of their parents!
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zippy
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2008-08-25, 11:02

Quote:
Originally Posted by Schnauzer View Post
ThunderPoit, Prednisone is the worst drug ever. When I first was diagnosed with leukemia and they put me on it for 29 days taking 100mg a day, that really sucked! Then when I stopped they just dropped me from 100mg to 0mg, that really sucked! I fucking hate Prednisone so much, I never want to take that shit again.
WTF?? Dropping from 100 all the way to 0 on prednisone sounds like absolute hell - and terribly irresponsible of your doctor. Damn. I went from 40 to 20 to 10 and will now go to 5 then 4,3,2,1. Everything I've read about Prednisone stresses how important it is to gradually wean off - the longer you are on it, the slower the weaning. 29 days at 100 Mg seems sufficient to require some kind of taper.

Do you know where children get all of their energy? - They suck it right out of their parents!
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zippy
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2008-08-25, 11:09

Quote:
Originally Posted by ThunderPoit View Post
Also, as if the side effects weren't bad enough, the pills taste like crap and leave a horrid aftertaste
No doubt!

I'd second the recommendation that some posted above about going in sooner to the doctor and discussing a tapering plan to eliminate the prednisone. All of my side effects seem to be of the temporary nature, so as I reduce the dosage, I do feel better in that regard. But there are some potential long-term/permanent side effects that are worth avoiding.

If your colitis symptoms are under control already, hopefully the Asacol can manage from here. Of course, if symptoms start to reappear as you reduce the prednisone, then you and your doctor can decide what you need to do.

Do you know where children get all of their energy? - They suck it right out of their parents!
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