Fistula Small Intestine- to Resection or not to Resection and other stuff...

[Jenny1121]

Hi, so I am 34 and new here. I was diagnosed with Crohns over 20 years ago when I was 9. My father also has severe Crohns. Between him and I I feel like I have a solid handle on all the fun times that Crohns can throw at us...but, I have encountered a new one! 11 years ago I had a protocolectomy and have a permanent illeostomy. For eights years I was solid- no symptoms, no disease, nothing...then in 2015 I ate Chinese food and woke up at 3am with an obstruction (I had NEVER had any problems with ANY type of food prior to this event). Since then I have been in a persistent flare with obstructions. I recently had an illeoscopy and MRI- the MRI showed fistula in my small intestine, severe inflammation, a small abscess, and other Crohns...the illeoscopy showed inflammation, fibrosis, crohns ulceration etc etc. Essentially severe disease. I have been on Entyvio and Prednsione the plan is to switch to Stelera. I have not ever encountered a fistula in my small intestine before and I am not really sure how worried I should be...my doctor said that even with Stelera I am more than likely heading towards a resection due to the fistula and severe inflammation and fibrosis...the kicker, my mom is currently in the late stages of a terminal illness and I do not want to have surgery until after she dies- I can't imagine how I would feel being in the hospital post-op and having her die without me being able to be there...she is terminal and currently in nursing home care but she has a rare illness called PSP and we can't get an accurate prediction on how long she has- it could be weeks it could be a year...it depends on a variety of factors none of which I have any control over (obviously). At this point, my doc. (who I trust and is above board) is willing to let me try the Stelera and hope for a quick response and he understands my strong desire to avoid surgery until Mom dies. But, I don't want my personal feelings about Mom to get in the way of my health- she would never want that. So I guess I am asking- any advice, thoughts etc? I really don't want to have surgery period (I am already missing my large intestine and I don't want to just start cutting out pieces of my small intestine) and I really don't want to not be there for Mom and I also really really want to start feeling better and I am kinda worried about Stelera as this is my last medication so I want to give it the best possible shot. I am just not impressed right now, overwhelmed, and trying to figure out what to do- I feel like if I said to my doc. let's resection he would go that route similarly if I said can we give it a few months he would go that route too. Right now, my knee jerk reaction to our discussion about these results of these tests was to say let's wait and try Stelera and now I am doubting myself...and I just kinda wanted to see if anyone had any thoughts. Thanks (sorry for the long rambly post).

 

[ronroush7]

Welcome. I am sorry for all you are going through. Don't let your symptoms get too bad. I think the Stelara can take several months to take effect. I know it is hard but try not to stress about the situation with your mother too much. I have been in a similar situation with my father recently and the stress made my symptoms worse. If you decide on Stelara, try to start it quickly so you can get better sooner. I send my support and prayers.

 

[Jenny1121]

Thank you! And yes, the stress with Mom I believe is partly what got me into this mess...my first Stelera infusion is scheduled for March 13th. I am just going to hold on and wait and see...one step at a time.