So I am BACK in the hospital. This is sooooo frustrating. I have been on 40mg prednisone and 6MP, due for Remicade this week. Well, started having stabbing right side pain Sunday afternoon, called my on-call doctor, he said I needed to head to the ER for another CT scan, showed inflammation and an "abscess" so they admitted me again. Thought we were going to drain the "abscess", but the surgeons didn't think it was drainable so they put me back on antibiotics. My GI is on vacation and the on-call GI has no idea what to do with me. He is resistant to treat my Crohn's because of this abscess (which may actually just be a loop of inflamed bowel, no one can tell for sure) and keeps telling me I have the worst case of Crohn's he has seen, which really doesn't instill confidence.
My husband called my surgeon today who has taken over my case. She is soooo much more confident and has an actual plan. It seems that much of my pain is from strictures, which are going to need to be taken care of surgically via strictureplasty. She also feels I need a resection in my terminal ileum area where all the inflammation is. The inflammation has responded somewhat to the prednisone, but there is still a lot there. The plan is for me to stay on the prednisone for a few weeks to continue to cool the inflamed area, taper as much as possible, and plan for a resection/strictureplasty in about
6 weeks. I have been trying to avoid this, but I am starting to think there is just too much scarring and I will be stuck with this pain unless it is treated mechanically. I am taking the next few months off from work to prepare my body for surgery (gain weight and rest) and then recover from surgery. Has anyone had this type of surgery? What were your experiences? She is going to attempt laparoscopically, but the bowel that needs to come out may be too inflamed to finish that way, so it may end up being
open. She says being on prednisone at the time of the surgery isn't "ideal", but is better than a huge mass of inflamed bowel - and she is not worried about
it. She is confident that I will do well considering I am otherwise young and healthy. I am still scared though.
It sounds like I should plan on 3 months for recovery. My surgeon seems to feel that I will be able to have normal bowel movements once fully recovered (she is anticipating taking about
1 foot small bowel - hopefully overestimating). Has anyone had this type of surgery and gone into remission with normal bowel movements?
The surgeon I am working with is relatively young - but she has been involved with me since early June and very helpful during this flare. She has given me her personal cell phone number and seems very confident that she can help me. I have a good feeling about
her, but hope I am not being naïve not going with a more veteran surgeon. She will most likely be doing the surgery with a more seasoned surgeon that I have met with before - he is just not as versed in the laparoscopy, but will be there to assist. I have met with a surgeon at the CC and did not feel he had much more to offer than the local surgeons here - he actually said it was their protocol to do a 3-month stoma (if you have been on biologics in the past 3 months) following a resection no matter what the individual case, which is kind of a deal breaker to me. He did not say he agreed with that protocol, just that it was what they did there at the CC.
Thoughts? I know I am rambling (kind of foggy from pain meds and IV steroids).
Post Edited (Myrne) : 8/4/2013 8:13:38 AM (GMT-6)