- Joined
- Jun 4, 2012
- Messages
- 209
Hey guys, wasn't sure where to post this in order to get the most responses, and I've never officially introduced myself so I'll try to keep it short and sweet!
I was diagnosed with Crohn's in 2004 at age 18, but was experiencing symptoms long before. Soon after dx I was put on Remicade. It helped some, as in it kept me from wasting away, but not much else.
In 2006 I had my first experience with the evil abscess/fistula. Took no less than 5 EUA's and trips to the ER but finally it got close enough to the surface for my Colorectal surgeon to see and operate on it. Almost immediate relief and very few problems after.
In 2007 I became pregnant with my daughter. I actually had a colonoscopy when I was a month a long and told I was in remission, only to find out later that the pregnancy was most likely causing my remission. Soon after my daughter was born, my symptoms returned ten fold and haven't really settled down since.
Remicade stopped working, switched to Humira. That worked for a little while but never truly achieved remission and had lots of nasty side effects.. Which brings us to my current predicament.
After Humira stopped working, my doctor put me on Prednisone (again) and switched me to Cimzia, mostly because I was showing signs of developing fistula problems again. The Cimzia did nothing, may have even made the abscesses worse. So after 6 months on Cimzia the doc took me off, leaving me with no treatment other than 40 mg of Prednisone, antibiotics, and some pain meds to help with the abscesses. This was also after about 5 abscesses drained and several EUA's and Seton placements.
He told me he had done all he could for me and was referring me to someone at Oshner's in New Orleans. The only options for me there were Tysabri or clinical trials. I honestly have no interest in taking any more immunosuppressants or immunomodulators, or anything of the sort. They have never gotten me into remission and have, for the most part, done more harm than good. It was time to look for alternatives..
At first I was set on trying the Whipworm therapy but soon realized it would not be feasible to travel to and from Europe every few months (especially with a very sore butt), then I stumbled upon the Stem Cell Transplant threads here on the forum. It seemed extreme at first, but the more I learned about it, the more I liked it.
I set up an evaluation with the team in Chicago and was accepted, I just had to get my fistulas taken care of and get insurance approval then it was all systems go! Easy enough, right?
Well the GI there referred me to a Colorectal Surgeon in Chicago, who could not see me until November 9th. I desperately tried to hold out until then but couldn't take the pain anymore. I set up an appointment with the Baylor IBD Clinic in Houston, TX. The doctor there immediately admitted me into the hospital (for pain management and to prep for surgery).
The surgeons there did a ton of scans so they would have an idea of what they were getting into, and basically told me the same thing I had been hearing, which was that there was nothing left to be done. But, they were willing to do an EUA and check things out.
The EUA turned into an almost four hour operation, and I came out with a huge chunk of my rear gone and very, very sore, gaping wound. The surgeon spoke to my Dad who was there with me for the surgery and basically told him that I didn't have one large abscess causing the pain, but rather a large network of small ones that weren't draining properly, and that I should have lots of relief very soon.
This was all fine and dandy at the time because I was still on good hospital meds and hadn't seen or felt the wound yet. But once I got home and had to remove the packing... I was HORRIFIED!!! (And still am horrified)
I have no idea what to make of this, I don't know what exactly the surgeon cut out, what the plan is, how it is going to heal, or anything. I'm due for a follow up within the next week, but that is a very long drive when you have a sore bum. I'm in excruciating pain all the time... I only thought I knew pain before with abscesses. This is like nothing I've ever experienced before.
Normally my cure all would be to soak in a hot bath with epsom salt, but I've learned the hard way that this is not what to do with a large open wound. I even tried lightly spraying it with luke-warm water in the shower and it still burns horribly.
I know I have to keep the area clean to prevent infection, but everything I do makes the pain worse. And it's bad enough already, the pain meds are barely even touching it. All I've been able to do since returning home is take pain and anxiety meds and try to sleep through the it.
Has anyone had a similar experience with fistula removal? How do you keep it clean and deal with the pain?
Any insight would be helpful... thanks in advance!
I was diagnosed with Crohn's in 2004 at age 18, but was experiencing symptoms long before. Soon after dx I was put on Remicade. It helped some, as in it kept me from wasting away, but not much else.
In 2006 I had my first experience with the evil abscess/fistula. Took no less than 5 EUA's and trips to the ER but finally it got close enough to the surface for my Colorectal surgeon to see and operate on it. Almost immediate relief and very few problems after.
In 2007 I became pregnant with my daughter. I actually had a colonoscopy when I was a month a long and told I was in remission, only to find out later that the pregnancy was most likely causing my remission. Soon after my daughter was born, my symptoms returned ten fold and haven't really settled down since.
Remicade stopped working, switched to Humira. That worked for a little while but never truly achieved remission and had lots of nasty side effects.. Which brings us to my current predicament.
After Humira stopped working, my doctor put me on Prednisone (again) and switched me to Cimzia, mostly because I was showing signs of developing fistula problems again. The Cimzia did nothing, may have even made the abscesses worse. So after 6 months on Cimzia the doc took me off, leaving me with no treatment other than 40 mg of Prednisone, antibiotics, and some pain meds to help with the abscesses. This was also after about 5 abscesses drained and several EUA's and Seton placements.
He told me he had done all he could for me and was referring me to someone at Oshner's in New Orleans. The only options for me there were Tysabri or clinical trials. I honestly have no interest in taking any more immunosuppressants or immunomodulators, or anything of the sort. They have never gotten me into remission and have, for the most part, done more harm than good. It was time to look for alternatives..
At first I was set on trying the Whipworm therapy but soon realized it would not be feasible to travel to and from Europe every few months (especially with a very sore butt), then I stumbled upon the Stem Cell Transplant threads here on the forum. It seemed extreme at first, but the more I learned about it, the more I liked it.
I set up an evaluation with the team in Chicago and was accepted, I just had to get my fistulas taken care of and get insurance approval then it was all systems go! Easy enough, right?
Well the GI there referred me to a Colorectal Surgeon in Chicago, who could not see me until November 9th. I desperately tried to hold out until then but couldn't take the pain anymore. I set up an appointment with the Baylor IBD Clinic in Houston, TX. The doctor there immediately admitted me into the hospital (for pain management and to prep for surgery).
The surgeons there did a ton of scans so they would have an idea of what they were getting into, and basically told me the same thing I had been hearing, which was that there was nothing left to be done. But, they were willing to do an EUA and check things out.
The EUA turned into an almost four hour operation, and I came out with a huge chunk of my rear gone and very, very sore, gaping wound. The surgeon spoke to my Dad who was there with me for the surgery and basically told him that I didn't have one large abscess causing the pain, but rather a large network of small ones that weren't draining properly, and that I should have lots of relief very soon.
This was all fine and dandy at the time because I was still on good hospital meds and hadn't seen or felt the wound yet. But once I got home and had to remove the packing... I was HORRIFIED!!! (And still am horrified)
I have no idea what to make of this, I don't know what exactly the surgeon cut out, what the plan is, how it is going to heal, or anything. I'm due for a follow up within the next week, but that is a very long drive when you have a sore bum. I'm in excruciating pain all the time... I only thought I knew pain before with abscesses. This is like nothing I've ever experienced before.
Normally my cure all would be to soak in a hot bath with epsom salt, but I've learned the hard way that this is not what to do with a large open wound. I even tried lightly spraying it with luke-warm water in the shower and it still burns horribly.
I know I have to keep the area clean to prevent infection, but everything I do makes the pain worse. And it's bad enough already, the pain meds are barely even touching it. All I've been able to do since returning home is take pain and anxiety meds and try to sleep through the it.
Has anyone had a similar experience with fistula removal? How do you keep it clean and deal with the pain?
Any insight would be helpful... thanks in advance!
I have not had problems with a fistula or abscess thus far (am VERY thankful for this) but from your time here you may have seen that we have a sub forum for these so do have a poke here as the folks here should have some suggestions for you. I take it that you are least having regular visits with a nurse regarding the dressing for these? When will you next be seeing your doc to have a check up?
