Hello all. My first post and figured I'd introduce myself and see if I can get some advice and help. Feeling down and people closest to me just don't understand. Haha. So let me start at the very beginning.
July 2nd 2014 I had a crazy fever, and slight pain on my left butt cheek. I didn't think much of it really, went home and rested. The pain got worse and worse as hours past. Woke up the next day and I felt a very large lump on my inner butt cheek while showering. I assumed it was just a boil since I am prone to them. Very painful but nothing I couldn't handle. Over the next couple days the pain increased to a level I had never experienced before. I refused to go to the doctor for a couple days and didn't have an up to date health card so I would have to go few a new card. I have never gone to the hospital, I don't go to doctors because generally I'm healthy with no problems a walk in clinic can't fix!! I waited. Finally the pain was a slid 9/10. I could not sit, couldn't use the toilet, couldn't walk.. Nothing. Went to get a new health card with a high fever so I could go to a walk in clinic!!! Haha big mistake. Walk in clinic told me to go to hospital immediately. I did. I had an abscess!! Yikes! I got lanced, drained and packed within a couple hours and felt like a million bucks!! Went home and was set up with a home nurse who came daily to change my packing and bandage. All was well for a couple days. But then the wound was closing, packing couldn't fit in anymore and I needed to be cut open again at the hospital. I knew something wasn't right. It felt like a pole was running from my butt cheek to my leg. Horrible. I kept going back to hospital (shocking from the girl who never goes to the hospital)... I went 6 times before the doc gave me an ultrasound which showed a fistula. I was then scheduled for an MRI 6 days later. Did that and was told I couldn't be seen until October!!! It was only July!!! Ugh! So I kept going back to hospital because of me being scared and in severe pain. I saw 3 specialists, all who would either under qualified by their own admission or completely useless in my opinion. Ended up getting fed up and went 2 hours to a different larger city to the hospital there to the ER to hopefully get to see a colorectal doctor. It worked... Kinda. Got an appointment with a general surgeon in London who by her own admission couldn't help me.. So she ran and grabbed the colorectal surgeon! Yes! Colorectal surgeon was amazing and told me I needed colonoscopy and a new MRI since my original wasn't good enough for them. I was pleased. MRI and colonoscopy happened in 3 weeks and I went in for an appointment and told I have a high perianal fistula (I knew that.) and I also have Crohns disease. I knew that too.. Self diagnosed of course haha. I was scheduled for surgery to get a Seton for the fistula assuming they were able to do that. They wouldn't know until they got in there. Surgery day came and I wasn't nervous at all! I ended up not getting a Seton, I got a partial fistulotomy (Sp??) and a drain tube. I was happy because as long as my fistula can drain, I'll be happy. Surgery was December 10th,its now February 15...within 3 days of surgery, the stitches keeping the tube in ripped out, and the tube has slid out at least 5 inches, I've had the tube trimmed twice now. It's still in there but just hanging on... I'm in the same kind of pain as I was prior to surgery. My fistula feels very full, drainage is nasty, and it's hard to walk/sit. I don't have any appointments booked with a surgeon, or GI.. Nothing. I feel forgotten about. I know I'm skipping a lot of this story but it's just so long and I'm long winded. Lol. Basically I've been to the hospital at least 20 times. I've seen 4 surgeons, 1 being a colorectal surgeon. I've been lanced and drained twice, have the tube put in, and the exact same pain. I know nothing more than what google and forums is telling me about crohns disease. I'm so tired. I'm so sore. No one has any clue about this and I feel like I bug them all with my "constant complaining" or just talking about what's going on with me. It's consumed my whole life!!! This fistula is the worst thing I've ever experienced. I'm told it's a grade 4 fistula..it's high, lots of "branches".. It's" complex" I'm told.. Lol. I just feel like no one has really done anything that really helps me!! Nothing has been solved. I'll know when my gastro doctor appointment will be on Tuesday, so that's a positive. But I don't have a lot of hope with the doctors that I've come in contact with in the past 8 months!!! Sorry it's so long. Any advice will be great. Please don't tell me sitz baths!! Haha before getting surgery I was told sitz baths are the only thing that will help me"... I refuse to believe that in 2015 all I can do to fix me is a salt water bath!! No!! And I take 2 a day anyway lol to keep the tube clean and free flowing.
So sorry it's so long winded. Please any advice will be appreciated!!!
July 2nd 2014 I had a crazy fever, and slight pain on my left butt cheek. I didn't think much of it really, went home and rested. The pain got worse and worse as hours past. Woke up the next day and I felt a very large lump on my inner butt cheek while showering. I assumed it was just a boil since I am prone to them. Very painful but nothing I couldn't handle. Over the next couple days the pain increased to a level I had never experienced before. I refused to go to the doctor for a couple days and didn't have an up to date health card so I would have to go few a new card. I have never gone to the hospital, I don't go to doctors because generally I'm healthy with no problems a walk in clinic can't fix!! I waited. Finally the pain was a slid 9/10. I could not sit, couldn't use the toilet, couldn't walk.. Nothing. Went to get a new health card with a high fever so I could go to a walk in clinic!!! Haha big mistake. Walk in clinic told me to go to hospital immediately. I did. I had an abscess!! Yikes! I got lanced, drained and packed within a couple hours and felt like a million bucks!! Went home and was set up with a home nurse who came daily to change my packing and bandage. All was well for a couple days. But then the wound was closing, packing couldn't fit in anymore and I needed to be cut open again at the hospital. I knew something wasn't right. It felt like a pole was running from my butt cheek to my leg. Horrible. I kept going back to hospital (shocking from the girl who never goes to the hospital)... I went 6 times before the doc gave me an ultrasound which showed a fistula. I was then scheduled for an MRI 6 days later. Did that and was told I couldn't be seen until October!!! It was only July!!! Ugh! So I kept going back to hospital because of me being scared and in severe pain. I saw 3 specialists, all who would either under qualified by their own admission or completely useless in my opinion. Ended up getting fed up and went 2 hours to a different larger city to the hospital there to the ER to hopefully get to see a colorectal doctor. It worked... Kinda. Got an appointment with a general surgeon in London who by her own admission couldn't help me.. So she ran and grabbed the colorectal surgeon! Yes! Colorectal surgeon was amazing and told me I needed colonoscopy and a new MRI since my original wasn't good enough for them. I was pleased. MRI and colonoscopy happened in 3 weeks and I went in for an appointment and told I have a high perianal fistula (I knew that.) and I also have Crohns disease. I knew that too.. Self diagnosed of course haha. I was scheduled for surgery to get a Seton for the fistula assuming they were able to do that. They wouldn't know until they got in there. Surgery day came and I wasn't nervous at all! I ended up not getting a Seton, I got a partial fistulotomy (Sp??) and a drain tube. I was happy because as long as my fistula can drain, I'll be happy. Surgery was December 10th,its now February 15...within 3 days of surgery, the stitches keeping the tube in ripped out, and the tube has slid out at least 5 inches, I've had the tube trimmed twice now. It's still in there but just hanging on... I'm in the same kind of pain as I was prior to surgery. My fistula feels very full, drainage is nasty, and it's hard to walk/sit. I don't have any appointments booked with a surgeon, or GI.. Nothing. I feel forgotten about. I know I'm skipping a lot of this story but it's just so long and I'm long winded. Lol. Basically I've been to the hospital at least 20 times. I've seen 4 surgeons, 1 being a colorectal surgeon. I've been lanced and drained twice, have the tube put in, and the exact same pain. I know nothing more than what google and forums is telling me about crohns disease. I'm so tired. I'm so sore. No one has any clue about this and I feel like I bug them all with my "constant complaining" or just talking about what's going on with me. It's consumed my whole life!!! This fistula is the worst thing I've ever experienced. I'm told it's a grade 4 fistula..it's high, lots of "branches".. It's" complex" I'm told.. Lol. I just feel like no one has really done anything that really helps me!! Nothing has been solved. I'll know when my gastro doctor appointment will be on Tuesday, so that's a positive. But I don't have a lot of hope with the doctors that I've come in contact with in the past 8 months!!! Sorry it's so long. Any advice will be great. Please don't tell me sitz baths!! Haha before getting surgery I was told sitz baths are the only thing that will help me"... I refuse to believe that in 2015 all I can do to fix me is a salt water bath!! No!! And I take 2 a day anyway lol to keep the tube clean and free flowing.
So sorry it's so long winded. Please any advice will be appreciated!!!
