My appt is tomorrow @ Cleveland Clinic....I'm not sure what to expect at all?
I've had crohns for almost 16 years now..was UC for 10 years prior but after the removal of my large intestine/temp colostomy when I was 15 they decided it was now crohns and I was no longer "cured"....bummer & heart-breaking at the age of 15! I am not taking any kind of meds at all, besides occasionally flagyl & cipro when my fistulsa are giving me trouble. Last month I was all set and ready believe me it took me many years to even make the decision to begin meds...I am a mother myself now and I need to take care of myself in order to take care of my girls...I was going to start remicade as my dr said I could very much benefit from I have crohns and hidradentis suppurative (HS) and remicade seems to work well for both diseases...I've had many problems with fistulas over the past 5 years...seton drains, cut & drained, even had a few surgeries to remove/dig them out, during this last visit I showed my dr this bump/lump that had been bothering me very much and though we had thought it was a fistusla and it has been treated as one for 3 yrs they decided it was from the HS not crohns...so I was not able to start on remicade with this open infection. I was sent home with both flagyl & cipro in hopes to double punch and knock this infection out, but after 4 days on both I was sick to my stomach dr told me to stop the flagyl and continue cipro on the 6th day this thing grew to the size of a golfball and finally on the 8th day it opened and drained alittle (YUCKY!!...but good Lord did that help!) well now this lump/bump has kinda ventured off and I have 3 new little lump/bumps all around the same area??? I'm sure this is the HS but I'm fearful in what my dr is going to say/do about it? Also my surgen @ CC was the one who told me this was HS, anyone with HS, where you dx by your GI/DR or did you get a dx from an actual derm/skin dr?? I'm not saying I dont believe my dr but I've read many articles that this disease (HS) can be very hard to dx, so my question is how can my crohns dr be so sure thats what it is? Both my dr (surgen & GI) think it's best to have this removed surgically, meaning pretty much dug out and deep, having to then heal on its own from the inside out...I forgot to mention this thing is on my inner thigh right when your thigh meets with your groin..PAINFUL...I am terrified of having this removed and really do not want to, but I'm not sure if I have any other options???? I understand that until this "infection" is gone I cannot start remicade but maybe this is some sort of sign not to start the remicade?? I'm weird I know..but I have not taken any meds for so long I'm afraid by starting I'm going to rock the boat so to speak?? I've also had pilodad (forgive my spelling please!) disease and in Jan had a few inches "dug" out of my tailbone/spine and that was packed and had to remain open to heal from the inside out...that was rough on me my girls are 4 & 2 and everytime I held on of them or got on the floor to play with them well heck anytime I pretty much moved was quickly reminded that it was there and I'm dreading having that kind of "wound" or pain again! Anyone out there that can offer some or really any info I would be so very thankful! I have a notebook full of questions & many many pages printed off on HS but really I feel like I have choice but to have this removed, and I don't like that feeling of not having a choice. Anyone have HS or been through something like this PLEASE help me out! Thank you all so much for taking the time to read this..I'm good at going on and on but again thanks for listening!
I've had crohns for almost 16 years now..was UC for 10 years prior but after the removal of my large intestine/temp colostomy when I was 15 they decided it was now crohns and I was no longer "cured"....bummer & heart-breaking at the age of 15! I am not taking any kind of meds at all, besides occasionally flagyl & cipro when my fistulsa are giving me trouble. Last month I was all set and ready believe me it took me many years to even make the decision to begin meds...I am a mother myself now and I need to take care of myself in order to take care of my girls...I was going to start remicade as my dr said I could very much benefit from I have crohns and hidradentis suppurative (HS) and remicade seems to work well for both diseases...I've had many problems with fistulas over the past 5 years...seton drains, cut & drained, even had a few surgeries to remove/dig them out, during this last visit I showed my dr this bump/lump that had been bothering me very much and though we had thought it was a fistusla and it has been treated as one for 3 yrs they decided it was from the HS not crohns...so I was not able to start on remicade with this open infection. I was sent home with both flagyl & cipro in hopes to double punch and knock this infection out, but after 4 days on both I was sick to my stomach dr told me to stop the flagyl and continue cipro on the 6th day this thing grew to the size of a golfball and finally on the 8th day it opened and drained alittle (YUCKY!!...but good Lord did that help!) well now this lump/bump has kinda ventured off and I have 3 new little lump/bumps all around the same area??? I'm sure this is the HS but I'm fearful in what my dr is going to say/do about it? Also my surgen @ CC was the one who told me this was HS, anyone with HS, where you dx by your GI/DR or did you get a dx from an actual derm/skin dr?? I'm not saying I dont believe my dr but I've read many articles that this disease (HS) can be very hard to dx, so my question is how can my crohns dr be so sure thats what it is? Both my dr (surgen & GI) think it's best to have this removed surgically, meaning pretty much dug out and deep, having to then heal on its own from the inside out...I forgot to mention this thing is on my inner thigh right when your thigh meets with your groin..PAINFUL...I am terrified of having this removed and really do not want to, but I'm not sure if I have any other options???? I understand that until this "infection" is gone I cannot start remicade but maybe this is some sort of sign not to start the remicade?? I'm weird I know..but I have not taken any meds for so long I'm afraid by starting I'm going to rock the boat so to speak?? I've also had pilodad (forgive my spelling please!) disease and in Jan had a few inches "dug" out of my tailbone/spine and that was packed and had to remain open to heal from the inside out...that was rough on me my girls are 4 & 2 and everytime I held on of them or got on the floor to play with them well heck anytime I pretty much moved was quickly reminded that it was there and I'm dreading having that kind of "wound" or pain again! Anyone out there that can offer some or really any info I would be so very thankful! I have a notebook full of questions & many many pages printed off on HS but really I feel like I have choice but to have this removed, and I don't like that feeling of not having a choice. Anyone have HS or been through something like this PLEASE help me out! Thank you all so much for taking the time to read this..I'm good at going on and on but again thanks for listening!
