let the waiting game begin/continue

In September 2012 I developed a peri anal fistula. Since then I have had a temporary loop ileostomy to see if it would help healing. I realized upon having my ileo that I have few choices to fix my peri anal issues except for remicade or permanent surgery. In December I was sitting on a fence as to what I wanted to do. After months of research and soul searching I know that i want to go through with surgery. I do not feel comfortable with remicade and hate being on biologics.

Now that i have made the decision I have been seeing my GI, my surgeon, a gynecologist. Things are underway to surgery but at my colonoscopy today I found slower than I would like. The hospital is under renovation and where there are usually four operating rooms, there are two until next year when there will be eight. I will have to wait six weeks until the end of July before I can go. Waiting is killing me physically, mentally and emotionally. I am tired of feeling great with the ileo but constantly leaking from my fistula.

I have not been able to work for two years because of my health and have been offered an amazing job. They will work around my surgery and let me start part time becoming full time in the fall. I was hoping to have surgery by now so that I could be healing much longer than five weeks before going back to work full time. Is it too much to hope that i can do this after such a major surgery?

I really want to get back to a normal life where I can enjoy my job, two young kids and husband and living crohns free. I cannot do this with the constant pain and discomfort of a fistula. I hate this feeling of being in limbo. I love my free Canadian health care but it also means working with the system and dealing with the delays. In the meantime I am trying to get my body in the best shape I physically can for surgery. This is challenging because walking hurts, moving hurts, sitting hurts, bending hurts.

I suppose I went to the Dr this morning with high hopes of hearing different news than waiting another 6 weeks and am bitterly disappointed. Now I can just wait and wait and waaaiiiiittttt some more.

I will be having a proctocolectomy with end ileostomy. It is planned to do it laproscopically but my fistula is very complex, a horseshoe with many tracts so they may not be able to. I do not know if the anal wound will be closed or left open.

Thanks for your reply, I hope that I heal as quickly as you.

I live in a rural community of 200 in North Ontario, two years,ago our general store and restaurant burned. It has left a large gap in our community. The new restaurant and grocery is almost done and I will be cooking in the restaurant. There are other muscles to do the heavy lifting so I am not worried about that. I will be on my feet for my work so i hope I have the stamina to stay up so long. Especially since I have lost so much weight and muscle in the past few years. I feel so weak so i am hoping work will get me back into shape again. I just spoke to my boss today and they will work around my abilities and will give me shorter shifts for the first little while. I have known my boss and most of my co workers since childhood (the pleasures of living in a small town) and am looking forward to working with them.

Wow! That job sounds awesome, congrats on finding such a great opportunity! I'm sorry to hear about the struggles your town has been facing lately...but it really sounds like a great little place to live.

I won't lie, being on your feet for hours at a time could be pretty tough at first, but not impossible. My biggest problem was that my back and right hip would get very sore. I was severely underweight, had lost most of my muscle mass and was very inactive for a good while leading up to my surgery. I'd say to get as healthy and fit as you are able to before surgery, and then get to walking as soon as you can afterwards, and as much as you can. That should help A LOT in your healing and getting ready for your new, great job!