• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Not so sure about remicade

K

kristenco09

Hi, I'm new hear and have some questions, I hope this is the right place to ask :) I was diagnosed with Crohn's when I was 16 (I'm now almost 22) and I was put on Imuran at the time. I took Imuran for about a year but stopped taking it because I felt really tired all the time and I got colds and strep frequently, I guess because it lowers your immune system. Well anyway, about a year ago I was told by a Dr that he didn't think o had Crohn's after all and that I must have just had an infection to cause all the inflammation (I had inflammation all the way from my esophagus all the way down) well I recently had to go to another Dr because of hemorrhoids and bleeding and now this Dr is saying I need to have yet another colonoscopy because he thinks I really do have Crohn's and that if the test come back positive then he's going to start me on remicade. Needless to say I'm past frustrated with doctors in. General and I've read a lot good and bad about remicade and I'm just really not comfortable with it at all. I have autonomic nervous system problems so I'm on some other meds already and I don't want to be on anymore. Especially one that causes more problems than it fixes. I feel like if I do in fact have crohn's, that It's not near as bad as most people have it. I don't have bowel problems other than going several times a day and I've never had a weight loss problem or been super sick. My main problem is the hemorrhoids and pain but I feel like there has to be an alternative to fixing my problems, instead of being put on an immune system suppressant. Any information or opinions is greatly appreciated :) sorry this is so long :)
 
David

David

Co-Founder
Location
Naples, Florida
Hi Kristen and welcome to the community. First off, if you'd like to introduce yourself in our Your Story forum, we'd love to properly welcome you :)

Regarding what you said above. First off, I'm glad the new GI is getting you a colonoscopy. If you were diagnosed with Crohn's in the past, especially if it was via biopsy results, then chance are you do have it, especially with your new symptoms.

When you say you have, "autonomic nervous system problems" can you elaborate on that?

As for Remicade, well, it's a fantastic medication. I'm definitely a fan and think it's a great choice for many people. Yes, there are potential side effects but I find improperly managed Crohn's disease to be MUCH scarier than the medication side effects. Of course, I'm a fan of the, "Shotgun approach" (my term) to the treatment of IBD. Utilize the medication your doctor recommends but then make dietary and lifestyle changes as well. Do everything you can to get the disease under control.

We're here for you.
 
K

kristenco09

David, thank you for replying :)
You asked me to elaborate on my autonomic nervous system problems, well It's kind of hard to explain so bare with me :) they say I have P.O.T.S. syndrome but that's a very vague diagnosis. Basically my body is very sensitive to everything, my blood pressure and heart rate go both very low and very high, I have heat intolerance and there's a lot more to it but the main problem is I pass out because of the blood pressure and heart rate issues. That whole thing is part of why I'm hesitant to get on the remicade treatment. Another reason is becausein the past year and a half that I've had these other problems, I've been tried on a lot (at least 20) different medications and I've had pretty bad luck with adverse effects with all of them. I guess It's because my body is sensitive? Idk for sure though. I also already get strep at least 2 or 3 times a year and I get uti s a lot too. So getting on an immuno suppressant makes me a little nervous :/
I really appreciate you're input and I'm willing to try the treatment I just have concerns and my Dr basically doesn't even give it a thought... So I thought I'd try here :)
Also, I definitely prefer any natural/ home remedies as long as they're legitimate lol with all the problems I've had with medication, I'm not real big on taking anything unless It's a last resort :) I hope my explanation is understandable!
 
LonghornGirl

LonghornGirl

I have a mild case of Crohn's and am starting Remicade after having 2 colonoscopies and CT scans. I never had a "flare-up" until I happen to get a bacterial virus, and didn't know I had Crohn's before that point. Now the bacteria is gone, but it's been over 6 months and I still have inflammation, fistula, and ulcers so my GI Doc is putting me on Remicade in hopes of smoothing out the tissue and getting it under control.

Trust me when I say it's a difficult choice to make, especially as someone who is no longer in pain, not feeling any sort of negative side effects on a regular basis, and doesn't want to spend money on treatment that may lead to worse things. However, knowing that I have fistula and tissue that is pretty damaged, I figure I owe it to myself to listen to my doc's rec's and pray the Remicade will work it's wonders for me and help me get back to normal.

As far as home remedies, a lot of folks swear by the Specific Carbohydrate Diet and I've heard it has been a miracle diet for getting people healthy without medical intervention. If you are willing to make a dietary lifestyle change, then that might be something you should look into. I would also be hesitant to start on Remicade if I had a history of sickness on a constant basis, so I wish you luck if you choose to ask about alternative treatment plans that will help you get your body under control.
 
K

kristenco09

Thank you Longhorngirl :)
I'm having another colonoscopy next Tuesday so I guess we will go from there :)
I'm praying that the inflammation and stuff won't be as bad as my Dr is thinking it is :)
And I'm going to research that specific carb diet, I've never heard of that so thank you :) I'm sure just one thing won't fix it all but I know diet and what you eat has a lot to do with it.
Hope the remicade helps with your problems! :) if you wouldn't mind I'd love to know how it effects you/if it helps any :) have a great day!
 
LonghornGirl

LonghornGirl

The book "Breaking The Vicious Cycle" is really helpful in understanding digestion and the role it plays with these type of illnesses. Here's a website with more information the Specific Carbohydrate Diet:

http://www.breakingtheviciouscycle.info/legal/listing/

I personally have not gotten to the point of going to the strict diet (I have a hard time giving up dairy, ice cream is a BFF of mine!) because my symptoms aren't severe and my doc doesn't seem to think my flare-up was diet-related. However, I have heard from several people that this diet has changed their lives for the better and they don't even have any symptoms at all (severe or mild). It's a controversial topic, some "researchers" think diet can help change the affects of Crohn's and UC more than drugs can, but it seems like the doctors all push drug treatments instead. It can be confusing knowing which guidelines to follow or which direction you should focus on.

I'll definitely follow up after my first session and let people here know how my experience went. I am nervous, but luckily will have some company with me the first time around. I've never even spent that much time in a hospital my entire life (except maybe the day I was born), so this whole process is new to me. I'm just putting my trust into my doctor right now that this is as necessary and helfpul as they have convinced me.

Thanks for your cheerfulness, hope you also have a nice day!
 
rygon

rygon

Moderator
hi ya :)

Ive been on remcade for a year and a half and its been great for me. It was either that or my large intestines being removed so Im so glad I took the drug. Dont expect miracles as t will take about 6 infusions to start working, and you still have to watch what you eat/drink and keep stress down. With regards with side effects, I get flu like symptoms for about an hour or 2 after infusions (do sometimes feel dizzy whilst having it but it does disappear after 10mins).

To me the chance of getting cancer is much higher when crohns is not settles than the remicade so im all for it
 
sneezey

sneezey

Location
New Jersey
kristenco09 said:
Hi, I'm new hear and have some questions, I hope this is the right place to ask :) I was diagnosed with Crohn's when I was 16 (I'm now almost 22) and I was put on Imuran at the time. I took Imuran for about a year but stopped taking it because I felt really tired all the time and I got colds and strep frequently, I guess because it lowers your immune system. Well anyway, about a year ago I was told by a Dr that he didn't think o had Crohn's after all and that I must have just had an infection to cause all the inflammation (I had inflammation all the way from my esophagus all the way down) well I recently had to go to another Dr because of hemorrhoids and bleeding and now this Dr is saying I need to have yet another colonoscopy because he thinks I really do have Crohn's and that if the test come back positive then he's going to start me on remicade. Needless to say I'm past frustrated with doctors in. General and I've read a lot good and bad about remicade and I'm just really not comfortable with it at all. I have autonomic nervous system problems so I'm on some other meds already and I don't want to be on anymore. Especially one that causes more problems than it fixes. I feel like if I do in fact have crohn's, that It's not near as bad as most people have it. I don't have bowel problems other than going several times a day and I've never had a weight loss problem or been super sick. My main problem is the hemorrhoids and pain but I feel like there has to be an alternative to fixing my problems, instead of being put on an immune system suppressant. Any information or opinions is greatly appreciated :) sorry this is so long :)
Click to expand...
First, don't get all worked up until you know the test results. For sure getting that done is a first step. After that you can start to decide on a treatment. If your disease isn't all that active, then maybe something like Asacol or Pentasa might be enough to keep it under control.

If you feel uncomfortable with Remicade, tell the doctor and choose an alternative. Some find it very beneficial, others have very bad effects. Everyone's different so you won't know until you try it. There are just so many choices now eventually one will be the right one for you.
 
tots

tots

Location
Austin, Texas
kristenco09-

I am sorry your having such a hard time right now! Please know you are not alone in the
yes you do/ no you dont merry go round!

Finding a medication program that works for you is very personal and by no means an easy
choice. Don't get discouraged- talk and ask alot of questions.

I have just had my 6th treatment and am still waiting for remission. Its a long process for me but, I have every expectation of getting there. The sooner the better!

Good luck, I hope you find your answers and treatment that works for you very soon!


Lauren
 
You must log in or register to reply here.
Top