• 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.

Long-time visitor is now a member

Hello Crohnsforum!

I finally joined the forum last month after numerous visits. I’ve placed a few posts/replies since then and thought I’d jump on and tell my story.

In my late teens, I had been ill with intermittent abdominal pain, alternating constipation/diarrhea and general GI problems. However, I could not get a diagnosis other than “it’s probably your nerves” which was the medical community’s way (back in the late 70’s) of saying I had some emotional issues. I recall one doctor telling my Mom that it’s all probably just in her head! I kept saying, “No, it’s all in my abdomen!” I was finally diagnosed at age 21 after emergency appendectomy surgery; at which time, they also discovered I had CD and performed a resection of the affected small bowel including removal of the cecum. Remission was short-lived and I began to show signs of active disease eight months later. Thus began the search for an effective medication and the elusive long-term remission. That search continues to this day.

I’ve had four more resections (have lost additional internal body parts besides bowel - that Crohn’s is a sneaky one grabbing onto neighboring tissue & organs) and continue to attempt several medications. I haven’t been in remission for quite some time and am considering Humira as my next option. I would like to try LDN but I’m getting heat to get the CD under control so I’ll save that “special” conversation for a little while longer. My last scope shows quarter size ulcers near the anastomosis. I also continue to battle a pesky rectal fistula that has been temporarily tamed by a Seton. I’m experiencing all the accompaniments of a rather brutal flare.

On the brighter side, I’ve an exceptionally supportive family, an amazing SO and a dear son! My medical team has been respectable and some on the team are superb. I have been able to work a full time position for many years now – though I have to admit it’s been tricky at times. And now, to come into this community of understanding and acceptance, with all of you, is just incredible - truly a blessing!

I look forward to being a part of this community.

My thanks to all of you

Melissa
 
Last edited:

afidz

Super Moderator
Welcome to the forum!
I personally had great results with Humira, but everyone is different, I wish you all the luck in the world in finding relief soon.
I see that you have taken Remicade, what was the reason for stopping it? What meds were the most successful?
 

SarahBear

Moderator
Location
Charleston,
Hi, Melissa! Glad you've joined up and decided to introduce yourself. :)

Your diagnosis story is very similar to mine (Afidz actually saw that and brought your post to my attention!) - although I didn't have surgery and have had a much easier time of it since my diagnosis. I was finally diagnosed via pill cam, but it took me nine years to finally achieve that diagnosis because it was, supposedly, "just nerves," and, "in my head." It sounds as if your mother was supportive of you, though (mine was the one saying those things). It's wonderful that you have such a great support system! Hopefully the forum will be able to add to that. :)

:hug: I hope things get better for you soon, Melissa!
 
Thanks for the welcome.

Afidz:

I developed antibodies to Remicade but had a pretty good two-year ride before that. Tried Cimza and the same thing so I'm keeping my fingers crossed that Humira will be the one to get me into remission and out of the surgery cycle.

SarahBear:

"Just nerves and in my head" - that was so insulting wasn't it? I'm so sorry your Mom wasn't more supportive. I think initially it was trying for my parents as well because there was so little known about CD in those days but they have hung in there with me and I'm so grateful for them.

Well, it's off to bed for me. I have to work the weekend because libraries never close, well almost never.

Have a good evening.
 
Hi Wildbill,

This is some pretty interesting info. My sister recently sent me an e-article from het local paper on the same topic.

I've read some of the info you sent and am amazed with the results. Not sure I'm ready to go there yet but it certainly worth considering.

I plan to read more as I am able. Thanks so much.

Have a good night.
 
Hey Melissa!

Welcome to the forum. I have to admit that I seek out the forum when I am in distress but lately have been more active and not in acute distress.

I am 48, diagnosed in 1992 and have pretty much done all the same meds as you. Only one resection but I am "very" close to my next one, which will remove about half of my ileum and I have had a good run with Crohn's.

I just started Humira last Friday and waiting to see how it works. I obstructed while I was on Cimzia and had 2 reactions to Remicade so had to stop it. My stricturing is severe so don't expect to have good results with Humira.

Hope you continue to reach out to the forum and you can message me anytime.

Darin
 
Hi Darin,

Thanks for the welcome.

Yes, we have tried many of the same meds and so as not to be outdone I am starting Humira tomorrow! I know it' s quite early in your process but have you noticed any change in how you're feeling?

I'm sorry to learn that you are likely looking at your second resection. Unfortunately, as you know, once the stricturing sets in it's a game changer. I have to say, it still seems unbelievable to me that I've done the surgery five times - I keep saying this the last time but my CD decides otherwise:(

Well, I will close for now. Need some sleep as tomorrow will be a busy day at work and taking time out to load up the Humira.

Likewise, PM me anytime.

Melissa
 
Top