Zudi a new member

[Zudi]

I am not certain where i am supposed to post my story. It isn't clear to me how to begin.

I had a severe bout of ulcerative colitis about 10 years ago. Even though I told three different MD's that I was taking Motrin for arthritis pain, not even the gastroenterologist picked up on it. I was so ill that he told me that I would either have to have surgery or go to a large hospital and participate in an experimental program. I went home & did an internet search & found out about NSAIDS. I stopped the Motrin and within 48 hours was in almost symptom free. I stayed well until the fall of 2007 when a series of catastrophic events (family surgeries, deaths, etc.) caused so much stress that I virtually collapsed on New Years Day of 2008. I saw the gastroenterologist and then got him to refer me to the Mayo Clinic for a second opinion. There I was diagnosed with Crohn's Disease. Since then I have been taking Humira injections every two weeks. I am doing fairly well, but still have annoying belly pain most of the time. It isn't severe and I can be distracted from it, but it does wear on the nerves.

I would love to stop taking the Humira since it depresses the immune system so, but am afraid to. Guess I just would like to know that there are others out there who understand what I deal with.

 

[Peaches]

:welcome: Zudi!! You posted in exactly the right spot!! Glad you have found us. We have had many a conversation here about people not being told to NOT take NSAIDS with IBD by their docs. I keep saying to my husband that there should be a generalized handout that the docs give to the patients about Crohn's that hits at least the highlights of the do's and don'ts - it would help the docs as well - oh well!

Not sure about quiting the Humira. If you really do have Crohn's I think it is a good idea to stay on some sort of maintenance drug as most of us have issues with the disease worsening over time and the chronic inflammation can do a number on your guts. I have been on Remicade for over 6 years now and have done very well on it. I am not sure if Humira is the same as I have never taken that - but I know with Remicade if I come off of it - I really shouldn't go back to it as that will increase my risk of building up antibodies to it and having a bad reaction.

Hope things stay quiet for you and welcome again to the forum. There is a Humira Club here - do a search for it - and join, you should find good information there!

 

[Rob]

Welcome aboard zudi

IMO I'd stay with the maintenance drug your on

the benifits far outway the downside
if ya feelin well, that's better than suffering in anyones eyes

 

[Mountaingem]

:bigwave: Welcome Zudi! In my experience stopping maintainence meds usually causes the disease to return with a vengence. Ask your Dr. about other meds if you're nervous, but pretty much all Crohn's meds are gonna depress the immune system-it's kinda the point.

 

[Guest]

hi and welcome, Zudi yep you've come to the right place when it comes to understanding life with Crohn's!

sorry to hear you still have tummy ache... it's amazing how we can actually get used to frequent pain

i would say stick with the meds for now, they seem to be helping you - and voice your concerns about Humira to your GI next time you see him/her.

 

[Zudi]

I have a new laptop that sometimes has a mind of its own. I started a reply & it whizzed off into the ether. Anyway, thanks for the input. I didn't realize that it could exascerbate problems to stop taking Humira (or other kinds of drugs for Crohn's) The Dr. at Mayo said I had the deep leisions of Crohn's so I'm pretty sure that is what I have.

In the last 6 months I have started to "live" again and start doing things in community service again (I'm retired so that had been my "job" in recent years.) For about 18 months, I was pretty much a couch potato and that isn't a healthy way to live. I joined a 6 week long wellness class last week & that has given me the opportunity to set some realistic goals like more exercise and keeping a food diary. Also found and joined this group. Thanks!

 

[imisspopcorn]

:welcome: Zudi....Glad you found the forum....I am glad you are feeling better. It has been my experience that quitting my meds when I feel good only backfired on me. I hope your health continues to improve.

 

[Jennjenn]

Welcome

 

[Pirate]

Welcome Zudi, you will find a great gathering of knowledge and advice here. Plus a lot of laughs which really help as a pick me up.

 

[Crohn's 35]

Welcome to the forum! Lots of information, and friendly people here.. glad you came to join us.

 

[shazamataz]

Welcome Zudi - Glad you found us

 

[kenny]

sounds like you had a really rough time and It is too bad you ended up in this position. But this place is a great resource for those of us stuck there with you.

If you want to get really serious about food and make major lifestyle changes you might be able to reduce your dependence on immune suppression and other meds. But that is a big might and this is the right place to get well grounded perspectives on all kinds of options.

Hope you get back to feeling better soon

 

[tamesis]

:welcome: