HealingWell
Search Close Search
☰

1 Year Post-Resection Colonoscopy...

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/12/2015 4:24 AM (GMT 0)
Hey all,

I had my one year post-resection colonoscopy done today. Unfortunately my crohn's returned in the form of 4 2mm ulcers at the resection area. I am extremely disappointed, as I have been eating gluten free, sugar free, organic, vegetarian, mostly dairy free, SCD, Paleo mixed in.

Basically I have been doing what I can. I'm very disappointed and feeling very down on myself.

I am going to have to start a drug now, maybe Humira or Vedolizumab. Do any of you know the cancer risk associated with Humira and Vedo? I do not have symptoms (never have) although I have had severe crohn's (micro perforation, absesses you name it!) in the past.

I am terrified of starting a biologic and ending up with cancer or horrible side effects :(

Please help .

thanks!!!

-L
Posted 6/12/2015 9:29 AM (GMT 0)
I'm sorry that you're remission isn't lasting after the resection. Although, for a severe case, you did pretty well without meds. If you had of used a biologic, you might have maintained your remission.

Fortunately, things seem minor, so getting onto a medication now will likely give very good results.

There's alot of biologics to choose from now. Remicade is still the state or the art treatment for Crohn's.

I think everyone that has had to wrestle with the decision to go that route has had the same fears and concerns as you are having. While the concerns are valid, the risks are really very small.

It's a personal decision, but I think most will tell you to take the next logical step.
Posted 6/12/2015 1:07 PM (GMT 0)
You are right that there are concerning risks associated with biologics, but there are definite risks associated with leaving your Crohn's disease untreated. If you go to www.ccfa.org you can watch some webinars that go into depth about the risks/benefits of all the Crohn's medications.

I am also one year post re-section. I am still lucky and in remission, but if/when my Crohn's returns, I will definitely be willing to take a biologic. I saw a Crohn's specialist at U of Chicago, and he recommended that I not take any medication until the Crohn's returns because he suspects my disease is very slow growing. He may or may not be correct, but I won't feel guilty that I didn't take biologics sooner if it comes back. We can only make the best decisions we can at each moment in time. Hang in there and let us know what you and your doc decide to do.

Please try not to blame yourself! Diet seems to help some people, but if diet were the cure, then there wouldn't be so many of us still suffering with this rotten disease.
Posted 6/12/2015 5:10 PM (GMT 0)
I recently started Remicade and it pretty much immediately put an end to a very nasty flare and I am feeling much better.

At the time I was also concerned about side effects but it is important to remember the most serious side effects are very rare. I spoke with my IBD nurse about Lymphoma for example and she said she had never seen a single case in over a decade of treating my hundreds of patients with Remicade. I'm not saying it does not happen, its just very rare. Also I'm sure your GI will be keeping a good eye on you with bloods etc.

More generally, I compare my lifestyle to my friends who are well and given the amount they drink, smoke, eat junk food I can honestly say I don't feel any more at risk of cancer than any of them. Obviously taking this medication is not an ideal situation for anyone but I take excellent care of myself otherwise so I'm really not too worried about side effects.
Posted 6/13/2015 8:34 PM (GMT 0)
Thank you all so much. I am disappointed, but I think you're right 73monte, because I did have severe inflammation and perforating disease along with abscesses, etc. I had no symptoms, but extreme disease. So in reality, I am probably even lucky I made it a year without recurrence. And I think the diet must have helped, although not 'fixed' it 100%.

I am willing to take the next step, take the medication (whatever my GI recommends). I have a feeling it will be a biologic, and although I don't 'want' to take medication, I have an extremely healthy lifestyle and like you say Jonny_Murray I am probably at the same or less risk as my friends (who smoke, drink lots, don't eat that well, etc) for cancer.

Thank you Gumby, I'm trying not to be hard on myself. I have literally done everything I can do with my diet. I realize now that it's more than just food for me...it's got to be genetic.

I found a great slideshow I wanted to share with you, it really helped me put the risk in perspective. Here it is: http://programs.rmei.com/CCFA139VL/Presentation/player.html

I also found a newer article stating that cancer risk is no more than the general population (with Humira): http://ard.bmj.com/content/early/2012/05/18/annrheumdis-2011-201244.full definitely worth checking out.

I should probably also be more grateful that I really don't have any symptoms, ever...I am lucky that way.

Thank you all!!

-L
✚ New Topic ✚ Reply