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Confused about Chrons..........

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Crohn's Disease
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Posted 7/21/2010 2:46 AM (GMT 0)
hey everyone,

im the noobie down here in AZ.  glad to stumble across this page. hopefully this will help with a little more information for me. 

about 9 months ago, the drs found a stricture and inflammation in my small intestine because i was constantly throwing up after i ate.  i was also having constant stomach pains at the time that were pretty bad.  since ive been out of the hospital, the only problems i have had was a slight pain on my left side about 2 hours after eating. they said it was linked to the stricture. makes sense.  the pain after eating has gone, and i am just about back to my old self, except for a sparatic feeling, not even a pain, just a quick "oh, that was weird" kinda feeling that will happen throughout the day, and seems to be more sparked by cold drinks, and foods high in sugar.  my GI said the explanation for the stomach pains i had, and the inflammation i still have in the intestine, is chrons.  The inflammation has been defined as "chronic inflammation" even though i feel fine and don't experience the pains after eating anymore. i am meeting with him tomorrow for a follow up, and he gave me a heads up to check out "remicade" and "humira". well, after doing some reading, those things scare the hell outta me.  the side effects risks don't justify taking, especially based on the way im feeling.  i don't have stomach cramping, or many bowel movements like chrons symptons suggest, so i guess im just wondering if there are any people out there that have any thought on this.  the only thing i think im concerned about is the "chronic inflammation" since ive read that can lead to cancers.  so besides the very few and sparatic weird movements in the tummy after drinking cold bev's, i feel fine. i am taking protonix 40mg to help with the acid production in the stomach, since i had ulcers in my stomach when i was in the hospital that 9 months ago.

sorry for the long book, but just wanted to get it all out there, and take in any feedback. also, anyone have any experience with this product as it relates to chrons? very interested in feedback on that as well.  http://www.digestaqure.com/index.html

thanks wink

 

Posted 7/21/2010 1:12 PM (GMT 0)
any input from anyone?
Posted 7/21/2010 2:01 PM (GMT 0)
Personally I think digestacure is a bit out there. However with real meds you have options. I suggest you check out the med threads on Ivy6 sig. Ask your Doctor why they want to go to the big guns first? Is it because your disease is silently severe, and advancing or is it because of your previous issues with it. You do have other options besides humira and remi.
Sorry it took me so long to respond.
Hugs,
Navy
Posted 7/21/2010 2:56 PM (GMT 0)
Be very careful about how much you read into side affects of these drugs. ALL drugs have side affects. They say that if they tried to get asprin approved now, it wouldn't go through!

I was on Remicade for 8+ years, and I'm happy I was. It was a wonderful drug and gave me many years of symptom free living.

You've got to realize that Crohn's can be a very quiet disease, but at the same time it can be doing lots of irreversible damage. Just because you don't feel "sick", doesn't mean that there isn't some inflammation going on in your gut. Taking the right medications now can limit or prevent those issues, rather than letting them grow and create major issues.

It's a good idea to read up on the medications, but you've really got to filter what you read. Also, look out for other people that have been on these drugs and tell you not to take them. Everyone reacts differently to them, and not everyone has issues with them. In my 8 years on Remicade, I NEVER had any problems, reactions or side affects, just years of symptom free living.
Posted 7/21/2010 3:09 PM (GMT 0)
I also agree with matthew
Posted 7/21/2010 3:28 PM (GMT 0)

Hi and welcome to the forum. I felt fine with occasionally throwing up with a bowel movement before they found a stricture in my colon. I have had it surgically removed and feel good now as well. I am on methotrexate and the plan is to have another colonoscopy in September and we will re-evaluate then. Like Navy said there are other drugs besides Remicade and Humira. This is for you and your GI to decide. A lot of people on this forum believe in taking some kind of maintenance medication even if you are feeling good.

No easy decisions, good luck.

Posted 7/21/2010 3:55 PM (GMT 0)
Hi there we almost got the same name :-)  

What meds have you been on so far? And when did you last have a colonoscopy? I've never been on remicade or humira but did have a lot of inflammation going on for years before i finally had a resection and have been symtoms free (or almost) ever since.

If i were you i'd definitely try other meds before jumping right into remicade or humira. You should really talk to you dr.

Posted 7/21/2010 3:58 PM (GMT 0)
welcome to the forum! I Agree with Matthewalso! and I am one of those firm believeers on being on a maitenence drug for the rest of my life, even when feeling fine, because from my experiences everytime I stop my maintence drug, I flare up.
Posted 7/21/2010 4:02 PM (GMT 0)
Your dr. may have a reason for wanting to start with one of the biologicals, but ask him if you have other options, if you are concerned with the side effects.  By the time my Crohn's was diagnosed (after 8 years), I was so sick they immediately put me on Remicade and it put me into remission.  I didn't have the "typical" symptoms like diahhrea either, just really bad stomach pain, wouldn't eat, joint pain, etc.  We've tried other meds now over the years, but only the biologicals keep my Crohn's in remission.  And so many of the pills elevate my liver enzymes, that I actually feel like I have less side effects on the biologicals than I do on some of the more "mild" pills.  It's only something you can decide what you are comfortable with, but you need to talk to your doctor on why he/she wants to start with the big guns...there may be a good reason that you decide is worth the risk. 

Posted 7/21/2010 5:18 PM (GMT 0)
mss82, I agree with everyone here, including your DR, LOL. The decision of which drugs to try first is very, very individualized. What you choose will depend on how your DR feels about the drugs, how you feel about the drugs, and how you respond to whatever you try.

For me, I've been treated by pretty conservative docs all along, and come from a family where interventionist medicine is strongly frowned upon (and my dad is a doc!). So philosophically, I was ok with the plan I was given - use steroids to achieve remission, 5-ASAs to maintain it.

Ten years down the road I have 3 short bouts of prednisone under my belt, one longer stay on entocort, and a lot of 5-ASAs down the gullet (plus now sulfasalazine). My bowel symptoms have never been terrible (well, except for the first 2 years or so). On the other hand, I have permanent arthritic changes in my sacroiliac joint that is linked to my bowel disease. If I had treated my Crohn's with biologics 10 years ago, I probaby would not have had this much joint disease. So I'm facing a philosophical conundrum like you are - are the side effects worth it? For me, the 5-ASAs have been free of side effects, but maybe I'm not in as much remission as I think....it is a tough, tough choice, with life-long consequences. Sorry.
Posted 7/21/2010 10:39 PM (GMT 0)
Firstly, DigestaCure is quack stuff. There was a thread about it not that long ago. If you do a search for DigestaCure it'll come up - second link.

Secondly, I agree with what everybody else has said. Crohn's can simmer away in the background, silently getting worse, which is pretty much exactly what happened to me. Ten years down the line I'm wondering if I would be in this condition today if I had got onto a maintenance drug which worked from the very beginning. Personally, Remicade/Humira as a starter drug for a case which appears to be currently mild and under control seems a tad overkill to me, but I'm not your doc and don't know his rationale for it. All you can do is ask him.

the only thing i think im concerned about is the "chronic inflammation" since ive read that can lead to cancers

Would put this particular worry out of your mind. After 10 years of UC/Crohn's, the risk of getting bowel cancer does increase but only if you have the disease in your colon, not your small intestine. And you have to have the disease for 10 years first before the increased risk begins.

Finally, I would get onto a maintenance drug of some sort, even if you feel well now. Most people need to be on medication to keep Crohn's at bay. Or to at least reduce the severity/amount of flare-ups.

Good luck.
Posted 7/22/2010 3:25 AM (GMT 0)
thx to all for the advice. the reason my dr said he wanted to start with those 2 major ones, was because he felt the others didn't really do anygood. he said its working from "the top down". and what are these flare-ups everyone keeps referring to? can you describe what happens and what you feel, and how often you experience them. im just kinda looking for signs to look for i guess. the only reason the dr thinks its chrons is because of the inflammation in the intestine. he said other than that, i dont have any of the symptoms. so im not sure which way to go. really confused. arghhh....
Posted 7/22/2010 3:58 AM (GMT 0)

Sorry I took me so long to respond.

I have a extreme case of chron's and have taken humira for a couple years. I am on Entocort, percocet, and Codine. I had to take it pregnant. My baby is 7 months old and doing great. I haven't have a problem from side effects from Humira.  I am not going to lie... the shot hurts like a bee sting. But the pain only lasts for a minute.  

On the other questions...

I can tell I am starting to flare when I start getting really tired, start forgetting to eat, and having those "sparatic" pains on my sides. I usually takes about a month or so to become a full flare up (like right now for me).

Where is your crohns located? Mine is from my stomach all the way threw with ulcers near the end of the large intestine. I have had this for over 5 years. You?

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