Hi, I'm new here.
I'm a female, mid-30s, was diagnosed with Crohn's at age 10 and had a bowel resection at age 14, which involved the removal of 2 feet of small intestine and my ileum. After that, I really didn't have any issues with my Crohn's aside from diarrhea caused by bile because I don't have an ileocecal valve (which is still a problem I have, though I am much more consistent about taking Welchol these days).
A few years ago I had a lot of diarrhea and rectal pain which I thought could be hemorrhoids or an anal fissure. I saw a GI in the area I had moved to and he agreed with my self-diagnosis without even looking at my butt, gave me some creams, and sent me on my way. After 2 more months of agony I called him back, demanded a banding procedure or at least a look at my butt, and he sent me to a CRS, who, upon looking at my butt, said "that's Crohn's." He gave me Flagyl and Canasa and it went away.
A few months later I noticed a lump between my anus and vagina. Dr. Google suggested a Bartholin Cyst, my primary doctor looked at it and agreed, and she sent my to GYN to get it taken care of. But because I'm anxious I did more Googling and found out it might actually be from my Butt Crohn's. So I went back to my CRS and he wanted to do an exam under anesthesia and sure enough, it was a fistula and an abscess. He completed the tract to drain the abscess and placed a seton, which I had in place for about 5 months.
During that time I also had a colonoscopy which showed quite a bit of inflammation so I started taking Humira about two months after the seton was placed.
The CRS was delighted with way the hole was healing after 3 months of Humira so he took the seton out. I was told the hole might close on its own, and was hoping it would.
It didn't. For a year I had gas and a small amount of feces coming out the hole, and sometimes it felt like I was passing gas or fecal matter through my vagina. This would get worse in the weeks leading up to my period.
The gas and light leakage is annoying. I don't like feeling like I'm tooting out my vagina. The CRS says he doesn't see a connection, but it's annoying enough and impacting my quality of life enough that he wants to do a LIFT procedure. In preparation for that, I had a seton put back in about 3 months ago.
Overall my CRS is very happy with how the hole looks. He always has been. He also told me he thinks the LIFT will be successful in closing the hole, and he doesn't think I need a temporary ostomy to allow it to heal because the area looks healthy and I'm not taking steroids, but he also said that choice is up to me.
I had a temporary bag back when I had my stricture. I was 14, it was for 6 weeks, and it was more cool to me than anything, so the "ew" factor isn't really an issue for me.
However, I am concerned about opening up my insides because I do have an ever-present ulcer where my resection was done. I fear any interference in my innards might exacerbate my intestinal disease.
I'm also concerned because he said the temp ostomy would be for 3 months. I don't know if I could do 3 months with my current lifestyle. I could and probably would do 6 weeks, but 3 months is just too much.
I came here to seek advice from anyone who has been in a similar situation. What would you do?
Additional info: I think my Crohn's is in remission. My colonoscopy after a year on Humira showed relatively little inflammation on the inside. I haven't had any new butt problems or fistulas, and as long as I take my Welchol I'm usually having one soft-solid movement a day. My blood work looks good, and I gain weight like crazy when I don't really watch it. I just can't get this hole to close.
I also don't totally understand the LIFT procedure or what to expect from it, so if anyone can point me to any helpful threads or diagrams I would greatly appreciate it.
Sincerely,
IHAH
Mid 30s / Female
Crohn's since age 10, bowel resection at age 14, butt problems began at age 33
I'm a female, mid-30s, was diagnosed with Crohn's at age 10 and had a bowel resection at age 14, which involved the removal of 2 feet of small intestine and my ileum. After that, I really didn't have any issues with my Crohn's aside from diarrhea caused by bile because I don't have an ileocecal valve (which is still a problem I have, though I am much more consistent about taking Welchol these days).
A few years ago I had a lot of diarrhea and rectal pain which I thought could be hemorrhoids or an anal fissure. I saw a GI in the area I had moved to and he agreed with my self-diagnosis without even looking at my butt, gave me some creams, and sent me on my way. After 2 more months of agony I called him back, demanded a banding procedure or at least a look at my butt, and he sent me to a CRS, who, upon looking at my butt, said "that's Crohn's." He gave me Flagyl and Canasa and it went away.
A few months later I noticed a lump between my anus and vagina. Dr. Google suggested a Bartholin Cyst, my primary doctor looked at it and agreed, and she sent my to GYN to get it taken care of. But because I'm anxious I did more Googling and found out it might actually be from my Butt Crohn's. So I went back to my CRS and he wanted to do an exam under anesthesia and sure enough, it was a fistula and an abscess. He completed the tract to drain the abscess and placed a seton, which I had in place for about 5 months.
During that time I also had a colonoscopy which showed quite a bit of inflammation so I started taking Humira about two months after the seton was placed.
The CRS was delighted with way the hole was healing after 3 months of Humira so he took the seton out. I was told the hole might close on its own, and was hoping it would.
It didn't. For a year I had gas and a small amount of feces coming out the hole, and sometimes it felt like I was passing gas or fecal matter through my vagina. This would get worse in the weeks leading up to my period.
The gas and light leakage is annoying. I don't like feeling like I'm tooting out my vagina. The CRS says he doesn't see a connection, but it's annoying enough and impacting my quality of life enough that he wants to do a LIFT procedure. In preparation for that, I had a seton put back in about 3 months ago.
Overall my CRS is very happy with how the hole looks. He always has been. He also told me he thinks the LIFT will be successful in closing the hole, and he doesn't think I need a temporary ostomy to allow it to heal because the area looks healthy and I'm not taking steroids, but he also said that choice is up to me.
I had a temporary bag back when I had my stricture. I was 14, it was for 6 weeks, and it was more cool to me than anything, so the "ew" factor isn't really an issue for me.
However, I am concerned about opening up my insides because I do have an ever-present ulcer where my resection was done. I fear any interference in my innards might exacerbate my intestinal disease.
I'm also concerned because he said the temp ostomy would be for 3 months. I don't know if I could do 3 months with my current lifestyle. I could and probably would do 6 weeks, but 3 months is just too much.
I came here to seek advice from anyone who has been in a similar situation. What would you do?
Additional info: I think my Crohn's is in remission. My colonoscopy after a year on Humira showed relatively little inflammation on the inside. I haven't had any new butt problems or fistulas, and as long as I take my Welchol I'm usually having one soft-solid movement a day. My blood work looks good, and I gain weight like crazy when I don't really watch it. I just can't get this hole to close.
I also don't totally understand the LIFT procedure or what to expect from it, so if anyone can point me to any helpful threads or diagrams I would greatly appreciate it.
Sincerely,
IHAH
Mid 30s / Female
Crohn's since age 10, bowel resection at age 14, butt problems began at age 33