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[SickofBeingSick]

I have been off work since June 2011. Had surgery July 14, 2011 after 2 years of constant pain, fatigue and weight loss. I had lost over 35lbs in last few months before surgery and was down to 80lbs. Surgery took 7 hours to resect small bowel in terminal ileum. Apparently due to massive adhesions which were a result of first 2 bowel resections. (2001 and 2003). I have been in hospital more than out, since surgery. I developed large hematomas post op, required 5 transfusions. Drains were inserted approx 3 weeks postop to drain fluid collections-6 of them. Abcesses developed and caused a fistula to form from anastomosis area on r, to one of old drain sites on lower left abdomen. Every time IV antibiotics are stopped, area on L lower abdomen swells, becomes fire hot with redness, and reopens to drain purulent drainage and then liquid stool. Noone in the area where I live knows what to do, so they have kept me on IV antibiotics. I finally got a PICC line inserted and I am able to receive IV antibiotics at home! It has been 7 months on this stuff and I do not think this is good for my immune system. I am taking Sulfasalazine, and according to surgeon-so far no active Crohn's since surgery. If anyone has heard of similar circumstance and has any ideas or treatment options- I am very open to suggestions. I am an RN and desperatly need to return to work soon! Please help!

 

[mikeyarmo]

Welcome to the forum SickofBeingSick!

I am really sorry to read about all the trouble you have been experiencing for the past 8ish months. I am glad to hear that there is no active Crohn's, but I agree that it is best to find a solution other than antibiotics.

Have you ever considered being seen by a doctor in Toronto? Mount Sinai Hospital has a reputable IBD centre and staff who might be able to give you some more guidance than the doctors you have locally. Even if you were able to only come for one visit, they might be able to recommend a treatment plan that you could take back to your hometown doctor to help manage for you.

Let me know if you think that is a possibility at all. While there are other treatment options that members of the forum are on (check out our IBD Treatment forum) it is hard for me to be able to determine what could work well for you (especially as I am no medical professional).

I hope the forum can be of some asssitance to you and that this year will see an improvement in your health and ability to work.

 

[Trysha]

I agree with Mike,and would suggest another opinion such as the one he mentions at Mt Sinai it is a very good set up there .
Another would be St Michaels hospital.
Hope you will feel better soon.
Hugs and best wishes
Trysha

 

[David]

Wow, I'm sorry you're having so much trouble I don't have any advice in addition to the above but wanted to welcome you and let you know we're here for you. I wish you all the best going forward and hope they can get this sorted soon!

 

[Angrybird]

Hi there, I also cannot add any further advice but I wanted to send my support and best wishes and I really hope that things improve for you soon :hug:

 

[SickofBeingSick]

Thanks so much for the warm welcome. It is nice to have support from people who know what its like with IBD. I have noone to talk to about this. So glad I joined this forum. I see my GP this week and see the surgeon next week. If I don't get anywhere with them I may just try going to Toronto. My brother lives near Hamilton. I have been to Ottawa, and was refered to a colorectal surgeon. I guess he is very busy, I was referred 2 months ago and still haven't heard anything. Very frustrated! Again thanks for the support.

 

[David]

If you haven't heard anything I would definitely call their office for an update to make sure you didn't get lost in the shuffle.

 

[SickofBeingSick]

Thanks I will.

 

[Angrybird]

Let us know how you get on hun.

 

[SickofBeingSick]

I will. Thanks again!