Hi Everyone! (sorry for the novel in advance...)
Just want to get my story out there. I have severe Crohn's that I was diagnosed with at 12 years old (am now 26, so had it for 14 years now). First showed up in the typical spot for Crohn's; in my ileum. A couple of torturous years and a few medication attempts later, I had a foot of my small intestine removed. I was able to keep symptoms minimal for about 8 years after with steady medication (Humira) and was able to finish high school with a relativley "normal" life. Now it has showed back up with a vengeance and I have been struggling with a severe flare for the last 2 years or so. According to my GI and Colon and Rectal surgeon I now have Colo-Rectal, Perianal Crohn's. Stricturing/scar tissue in the anus that I have to get digitally dilated every 6 months so I can poop ok (which is very painful). So basically from the descending colon all the way out is inflamed. The last 2 years have been hell dealing with this as an adult. Switched from my double dose of Humira that I'd been on during my better time, to trying a dosage study for Cimzia. That was no fun at all. Now I'm on a double dose of Cimzia (which was a pain getting approved thru insurance) that is keeping me barely above water. I make urgent bathroom trips every 1 to 2 hours. There have been a few times where I haven't quite made it all the way to the bathroom, which can be very frustrating. I'm in a considerable amount of pain right before, during, and after a bowel movement. Have frequent fevers, fatigue, vitamin deficiencies, and all other variation of annoying problems that come with inflammation and reactions to medications that I'm sure a lot of you have been familiar with. My GI is talking about trying another study, different medication. I'm trying to keep down a full time job that I need to pay the bills. I'm really getting sick of living this way. My entire life revolves around whether there's a restroom where we're going and how accessible it is. I'm afraid to move up at work or finish school or really live my life because of this. Plus my poor husband has to put up with me and my health issues (he hates that there is nothing he can do for me). My Colon and Rectal surgeon has vaguely mention having to do an ileostomy (or temp ileostomy) if meds are not successful. Upon hearing this the first time at the beginning of my flare, I was really upset. But now after feeling like this and the struggle it has brought, it would be so worth feeling better. Vanity aside. This is something I see coming up in my near future (the next year or two). Reading about your experiences has been very helpful for me emotionally: Seeing other people who have gone through the same type of thing. I plan to talk to my surgeon and GI after this next colonoscopy to see exactly what my surgical options are so I can fully research everything and decide whether I want to attempt further meds or have a procedure done. With Crohn's I know I will never be totally out of the woods, but if this could give me another 8 or so years of liveable, enjoyable life it would totally be worth it to me. Who has experienced an ileostomy w Crohn's and how has it been? How was it adjusting to life with it? How was your self image/sex life affected? Anyone had a flare during a period after their ileostomy and was it hard to deal with?
Marissa
Just want to get my story out there. I have severe Crohn's that I was diagnosed with at 12 years old (am now 26, so had it for 14 years now). First showed up in the typical spot for Crohn's; in my ileum. A couple of torturous years and a few medication attempts later, I had a foot of my small intestine removed. I was able to keep symptoms minimal for about 8 years after with steady medication (Humira) and was able to finish high school with a relativley "normal" life. Now it has showed back up with a vengeance and I have been struggling with a severe flare for the last 2 years or so. According to my GI and Colon and Rectal surgeon I now have Colo-Rectal, Perianal Crohn's. Stricturing/scar tissue in the anus that I have to get digitally dilated every 6 months so I can poop ok (which is very painful). So basically from the descending colon all the way out is inflamed. The last 2 years have been hell dealing with this as an adult. Switched from my double dose of Humira that I'd been on during my better time, to trying a dosage study for Cimzia. That was no fun at all. Now I'm on a double dose of Cimzia (which was a pain getting approved thru insurance) that is keeping me barely above water. I make urgent bathroom trips every 1 to 2 hours. There have been a few times where I haven't quite made it all the way to the bathroom, which can be very frustrating. I'm in a considerable amount of pain right before, during, and after a bowel movement. Have frequent fevers, fatigue, vitamin deficiencies, and all other variation of annoying problems that come with inflammation and reactions to medications that I'm sure a lot of you have been familiar with. My GI is talking about trying another study, different medication. I'm trying to keep down a full time job that I need to pay the bills. I'm really getting sick of living this way. My entire life revolves around whether there's a restroom where we're going and how accessible it is. I'm afraid to move up at work or finish school or really live my life because of this. Plus my poor husband has to put up with me and my health issues (he hates that there is nothing he can do for me). My Colon and Rectal surgeon has vaguely mention having to do an ileostomy (or temp ileostomy) if meds are not successful. Upon hearing this the first time at the beginning of my flare, I was really upset. But now after feeling like this and the struggle it has brought, it would be so worth feeling better. Vanity aside. This is something I see coming up in my near future (the next year or two). Reading about your experiences has been very helpful for me emotionally: Seeing other people who have gone through the same type of thing. I plan to talk to my surgeon and GI after this next colonoscopy to see exactly what my surgical options are so I can fully research everything and decide whether I want to attempt further meds or have a procedure done. With Crohn's I know I will never be totally out of the woods, but if this could give me another 8 or so years of liveable, enjoyable life it would totally be worth it to me. Who has experienced an ileostomy w Crohn's and how has it been? How was it adjusting to life with it? How was your self image/sex life affected? Anyone had a flare during a period after their ileostomy and was it hard to deal with?
Marissa