Hi Everyone,
I am new to this website. I'm starting this thread because I have been searching these forums for months but haven't quite found someone in my same situation (though there are some similar ones).
I was diagnosed with Crohns Disease in June of 2017, and over the month following my diagnoses began to feel intense pain in my behind area. I went to doctors for help but they thought I just had a hemorrhoid. Finally, after weeks of this intense pain I developed a fever and was very faint, and decided to go to the ER. They did a CAT scan and found that I had a pretty deep perirectal abscess. They had me stay the night to try to get my fever down and then drained it the next day. The doctor said it was the size of a small fist, and had me stay in the hospital another night. When I was released, I was told to pack the wound twice daily and had follow up visits every two weeks. At first, it healed quickly. But once it got to about 8 centimeters deep, it began to heal into a narrow tunnel (maybe 1 centimeter wide), and stay that way.
It has been 9 months since the drainage procedure, and my wound is now at 6-7 centimeters deep, nearly 1 centimeter wide. It has been this same depth for the last 4 months. My original surgeon had me start seeing a colorectal surgeon a few weeks into the healing process. When the colorectal surgeon noticed that the wound was not healing and was still draining a lot, he had me get a fistulagram (which was a pretty crazy experience!). However, the fistulagram showed that I did not have a fistula. My colorectal surgeon then suggested I start going to a wound care specialist, since he couldn't figure out what to do. So, for the past 5 months or so, I have been going to a wound care center regularly (in addition to monthly appointments with my colorectal surgeon). I am still packing the wound twice a day, and the wound specialist cleans and occassionally cotorizes it to aid the healing process as well. The wound is still draining enough so that I need to wear a sanitary pad 24/7. The wound care specialist has no idea how to help beyond these regular appointment cleanings and twice-daily packings.
I should also note that my GI had put me on Lialda initially when I was first diagnosed, and it worked very well. My symptoms, apart from the wound, nearly stopped completely. However, my colorectal surgeon and wound care specialist urged me to go on Humira to help with the wound healing, describing it as almost a magical fix. I spoke with my GI and he reluctantly prescribed me the Humira. I've been on it for a couple of months now, and unfortunately, my wound has stayed the same. I am so disappointed.
Luckily, I am able to pack the wound myself (I just use a mirror and twist around to do it) at this point. I have made this a small part of my life. But I am concerned by the whole mystery of this situation. My doctors really have no idea how to help, and the Humira isn't working as they said it would.
Does anyone have advice?
I am new to this website. I'm starting this thread because I have been searching these forums for months but haven't quite found someone in my same situation (though there are some similar ones).
I was diagnosed with Crohns Disease in June of 2017, and over the month following my diagnoses began to feel intense pain in my behind area. I went to doctors for help but they thought I just had a hemorrhoid. Finally, after weeks of this intense pain I developed a fever and was very faint, and decided to go to the ER. They did a CAT scan and found that I had a pretty deep perirectal abscess. They had me stay the night to try to get my fever down and then drained it the next day. The doctor said it was the size of a small fist, and had me stay in the hospital another night. When I was released, I was told to pack the wound twice daily and had follow up visits every two weeks. At first, it healed quickly. But once it got to about 8 centimeters deep, it began to heal into a narrow tunnel (maybe 1 centimeter wide), and stay that way.
It has been 9 months since the drainage procedure, and my wound is now at 6-7 centimeters deep, nearly 1 centimeter wide. It has been this same depth for the last 4 months. My original surgeon had me start seeing a colorectal surgeon a few weeks into the healing process. When the colorectal surgeon noticed that the wound was not healing and was still draining a lot, he had me get a fistulagram (which was a pretty crazy experience!). However, the fistulagram showed that I did not have a fistula. My colorectal surgeon then suggested I start going to a wound care specialist, since he couldn't figure out what to do. So, for the past 5 months or so, I have been going to a wound care center regularly (in addition to monthly appointments with my colorectal surgeon). I am still packing the wound twice a day, and the wound specialist cleans and occassionally cotorizes it to aid the healing process as well. The wound is still draining enough so that I need to wear a sanitary pad 24/7. The wound care specialist has no idea how to help beyond these regular appointment cleanings and twice-daily packings.
I should also note that my GI had put me on Lialda initially when I was first diagnosed, and it worked very well. My symptoms, apart from the wound, nearly stopped completely. However, my colorectal surgeon and wound care specialist urged me to go on Humira to help with the wound healing, describing it as almost a magical fix. I spoke with my GI and he reluctantly prescribed me the Humira. I've been on it for a couple of months now, and unfortunately, my wound has stayed the same. I am so disappointed.
Luckily, I am able to pack the wound myself (I just use a mirror and twist around to do it) at this point. I have made this a small part of my life. But I am concerned by the whole mystery of this situation. My doctors really have no idea how to help, and the Humira isn't working as they said it would.
Does anyone have advice?