Currently on no medication at all. Doesn't seem right?

[marmalade22]

Since my diagnosis a little over a year ago i have been on almost all the medications availiable that have worked to some extent but not enough to get me well which resulted in a really bad flare up over new year and eventually losing my colon this past Wednesday and having an ileostomy.

I am over the moon with the surgery as I am no longer on deaths door as my disease was isolated to my colon so my surgeon has said that my body is currently disease free.

However, my diagnosis has always been unclear with biospys always coming back indeterminate. I have had all the camera tests so we know it is not currently in my small bowel, stomach etc. however I do have anal skin tags apparently and have suffered from mouth ulcers that would appear and get increasingly worse when my other symptoms would. Also my main symptom all year was heavy bloodloss and the disease was continuous rather than segmental. So they are currently using my old colon to try and figure out if I have crohns or UC.


What I am concerned about at the moment (and wanted to ask on this forum if others experienced the same after surgery) . They have taken me off ALL ibd medication for the next 6 weeks of recovery until my outpatient appointment where I am reevaluated. I am currently only tapering down from 20mg steroids for the next 6 weeks and that is it! for the past 5 days. It just seems silly to me to take me off my maintenance med of 50mg 6mp (just in case it is Crohns) as I don't want to be flaring again 4 days after surgery.

I currently have a sore mouth/ tongue and what looks like could be a a tiny ulcer by on my gums, but I don't know wether this could be my crohns or because of the surgery/ tubes/ pain medication/ eating again after 3 months etc. I have absolutely no other symptoms apart from obvious post surgery pain and tenderness, but mouth ulcers were an ibd symptom for me.

Has anyone else experienced this?

 

[fuzzy butterfly]

Hi and welcome.☺
Sorry you need to be here
I had a re-section at my terminal ileum 2014 and a reversal of the stoma in 2015 . I have been on no crohns meds in that last 2yrs. No symptoms either.. please in form your docs about your worries n symptoms ie the ulcers .. best wishes n hugs

 

[Teacrumb]

There could be a lot of reasons you are on no meds following surgery. For one, most Crohn's meds increase the risk of infection. I was on remicade when I had my surgery, and they took me off remicade before the surgery due to concerns about infection.

It was a good thing, too, because... well. I did end up getting a major infection even without the remicade. Colon surgery is pretty high risk as far as infections go.

Also, it may be helpful for your doctors to see how quickly the Crohn's returns after surgery. I began having inflammation at the surgical site within about a week. But my symptoms quickly subsided, and I was symptom free for a long time without meds.

The important thing is just to keep close to your doctors during those six weeks so they can do their job and monitor your symptoms. They may want to reconsider your medication entirely after surgery. My meds changed completely - I was taken off remicade, went medication free for about a year, was then placed on 6mp for maintenance and later humira to keep me in remission.

I would also say that it is not uncommon for your symptoms to change post-surgery. I never had problems with diarrhea before surgery but began having that as a symptom later. Your docs probably want to start clean and make sure that you are on the meds that are right for you.