New to Forum - Diagnosed 2005

[soloman69]

Hello,

I'm Tracy and I am glad to be a part of this forum as it takes away that separated feeling that accompanies Crohn's.

I am on Remicade 500mg each 4 weeks, and Immuran 150mg daily. I have a rectal/vaginal fistula that has seriously complicated my life. I have now had 4 surgeries in the past two years trying to close it - all unsuccessful. Each time they operate, it is worse for me. Originally this fistula was absessing, so I had a seton suture, it became painful as the suture was twisting with all the activity and gradually got tighter - opening the fistula even more. I had it removed and have been living with it's aftermath ever since.

I had a general surgeon for the first two failures and a colo-rectal specialist for the third and fourth attempt. I have the best guy in British Columbia according to my research - and admittedly, he seems very competant to me.

I am terrified of the next surgery, which is yet a mystery to me - not sure what direction they will go. I am running out of labia (sorry for the graphic nature of this post) and with the constant diaper rash, irritation - the pain is unbearable. Not to mention the affect it has had on my physical relationship with my husband (wonderfully understanding as he may be).

I am now to the point where I am finding it hard to see any light at the end of my tunnel. I have been dealing with this particular fistula for 6 years now and have even considered taking the easy way out due to my lack of hope. I am now on anti-depressants which have taken at least that desire away.

Can anyone recommend the best way to find the best surgeon in Canada?
I want a referral from my current surgeon and am not sure how to find the right information.

Cheers to you all, it is a very difficult thing to live with and I think only other fellow patients can truly understand.

Thanks in advance.

 

[Crohn's 35]

:welcome: Tracy...looks like you found us just in time! There are some here with your problem, I have not had any of your symptoms and areas for surgery. I have had 2 resections and exploratory but none such as yours. Remicade usually works for most people... can they up the dose? I would try that rather than repeated surgery which must be excruciating to say the least. I dont know of surgeons in BC but I do know of a good one in Thunder bay who is an intestinal bowel/cancer surgeon. I went to his seminar but this is way out far from you . His name is Dr Mapaso, and if I had to have surgery again he will be the only one for me.

I can't help you much but wanted you to know you have alot of support and help here. Some one is bound to help you. Hugs, glad you found us!

 

[soloman69]

Remicade

I recently saw another doctor... he's young so I was inspired as his knowledge is fresh and up to date. I went to him to see if I should go on Humera, as the remicade was not working.

I had a lapse in my treatment because I had to pay for my perscriptions up front and then are re-imbursed by my benefits. I just didn't have the $4000 which at the time was my cost every two months for 400 mg.
I had joint pain so bad that I could not dress myself (ankles/elbows/hips/wrists/fingers) Rheumatoid Arthritis I am told but the Remicade seems to keep it at bay. During my lapse is when I discovered this.
I was without meds for about a month before I could afford it.
I have remedied this now and have found a pharmacy that will get the money from my benefits company. Canada Safeway Pharmacy would not do this.

When I saw this new young doctor - he said that I was at the starter dose for Remicade and that we should double the amount and up it 100mg.

So now instead of 400mg every two months - it's 500mg every 1 month.

My "Crohn's" doctor told me that I was already at my maximum dose for my weight when I asked him to increase it. I think that some of my pain and discomfort could have been avoided.

As it is - I still get only about 3 weeks relief (mostly arthritis) and my fistula is too large to close naturally. My stomach has been bad lately but I'm sure that's just to do with the stress in my life (not working/not playing/not comfortable socially etc...)

 

[Crohn's 35]

I had to pay upfront too but used a credit card to purchase it and got reimbursed from our insurance. Glad you got if figured out. Hope you get relief soon.

 

[Del]

WOW!!
That is tough Solomon. I have nothing to offer in the way of comfort or suggestions or advice. I am just amazed at how much people suffer with this disease and still go on...
Your very strong..
Take care..

 

[xJillx]

Hi Soloman and welcome! I am so sorry to hear you have been dealing with this fistula for 6 years! I sure hope that your next surgery is your final surgery, and it successfully takes care of that fistula once and for all. Hang in there!

 

[soloman69]

I appreciate the kind words of encouragement. I'm doing my best to stay optomistic. I see my specialist and my surgeon Nov 9th, so hopefully I will get some good answers.

Thanks again for listening. xo

 

[Sunshine Cat]

:welcome:I have a feeling this time things are going to work out for you. Just keep your spirits up, life has a way of making roadblocks and if we have faith we can knock them down. Good Luck!