A few questions

[cwf5020]

Hi, I am new to this forum. Here is a quick background on my Crohn's Diesease. I was diagnosed when I was 16 years old (6 years ago). At that point it was too far advanced to be treated with medication, so my doctors opted to go with surgery when I was 17 years old. I had 6 inches of my intestine removed. After my surgery the only medication I was on was Pentasa . I did not take any supplements either. Being a teenager, I did not take my medication everyday like I was supposed to, looking back I wish I would have, and I have grown a lot since then and wish I had been more proactive.

I have had a couple of flare ups since my surgery, but they were quickly treated with a course of Prednisone or Entocort. Now the last couple months have been pretty rough. It seems like I have been having a flare up for a few weeks now, and it just doesn’t want to go away. I am currently on Prednisone (40 mg), Entocort (9mg), Flagyl (1000mg), and Pentasa (3750 mg) per day. Next week I go into the doctor to have an Upper GI done. Then in two weeks I go to have a colonoscopy and endoscopy done. I should know a lot more about my current condition when these tests are done.

Now to my questions.
1. For people on Humira or Remicade, how has it helped your Crohn’s? I am worried about some of the side effects from these medications, such a cancers. Is this something you worry about? Is it very uncommon?
2. If my tests come back not too good, and I need another surgery, how much bowel can a person have removed and still function normally?
Thanks for your help.

 

[CrohnsHobo]

Now to my questions.
1. For people on Humira or Remicade, how has it helped your Crohn’s? I am worried about some of the side effects from these medications, such a cancers. Is this something you worry about? Is it very uncommon?
2. If my tests come back not too good, and I need another surgery, how much bowel can a person have removed and still function normally?
Thanks for your help.

Welcome cwf!

1) I was on Remicade for years and it worked well, but last year it just slowly stopped working. I am now in the process of moving to Humira. I had no side effects from it and I really didn't think much about the Lymphoma side effects. The % were not high enough to worry me. If it happens it happens and I deal with it then. Got to do what I can to get better now.
2) Have yet to have any surgery, so can't really answer that.

 

[kenny]

You have about 6 meters of bowel. So that would be like 18 feet. Different parts do different things so a lot depends on what parts are affected.

Your still normal, just like the rest of us

Don't psych your self too much if you can help it.

 

[imisspopcorn]

:welcome: cwf.....There is ton of great info here and support. I had surgery to remove 6inches of terminal ileum..I also went on Remicade 6 months after the surgery because the disease began to attack healthy bowel

At the moment, the Remicade is working great. I haven't felt this well in years. There is a Remicade club thread in the treatment section of the forum. There is also a Humira thread. You can read different perspectives from different peoples experiences.....

As far as how much bowel can go, it depends. The more that is removed, the more chances you have of being malnourished and vitamin deficient.....

Good luck. If you have any more questions just ask

 

[My Butt Hurts]

Hi CWF - welcome to the forum!
I was on Humira and it worked really really well and kicked in very quickly. It quit working after 4 1/2 months though. I have now been on Remicade for 14 months, and it is absolutely amazing for me. I feel fantasic almost all of the time.
I did worry about the cancer risk at first, and didn't want to go on either of those meds, but didn't really have a choice. I guess I just have to live for today. Odds are it seems, we're all gonna get cancer eventually. Cancer is often curable, Crohn's isn't.
Good luck with your procedures and your meds decision.
MBH

 

[Crohn's 35]

Hi there CWF, I too had 6 inches removed the first time and it laproscopically done. Had quite a few good years but ignored that I had a disease and kept smoking, and eating really bad.

Remicade and Humira are good choices, you are on a lot of medications now so they can be just as risky. Although all medications have risks , the HAVE to label every side effect even if very little, it doesnt affect everyone so you have to try and stabilize your Crohns now, because another resection is kinda too soon. The Ileum is where you absorb the most nutrients you really want to try and avoid cutting out unecessary amounts. Doctors knows this, hopefully the Remicade should help. Good luck and keep us updated.