Hello there. My name is Teri, and I'm a 42 year old mother of 2 boys (one is 20, in his 3rd year of college, and the other is 4). The past 4 months I've been dealing with a massive Crohn's flare-up. I actually only just got diagnosed during this time, but on hind-sight it seems obvious that I've had it for quite some time - probably at least 15 years. The biopsies and tests I've had, have my doctor thinking the same thing.
I was put on a 2 month round of Prednisone which didn't stop the pain and inflammation. During this 4 month period I've had so many tests (CT, MRI, 2 colonoscopies, endoscopy, small bowel follow thru, blood work, stool study, etc) by various doctors - I'm on my 3rd doctor right now. The first 2 were just not for me, but the 3rd I really like a lot.
So to get to the reason for my post... my G.I., after looking through all of my files, the test results, etc, she highly recommends that I have a bowel resection. I met with a surgeon yesterday, and he seemed really great - qualified, experienced, patient with me while I asked him 2 pages worth of questions. He also agreed that I need surgery. We talked about doing it the first week of January, once the holidays are past.
I'm also BRCA1 positive - this increases my risk of breast, ovarian, colon and other cancers. Because of this genetic mutation I've had preventative, risk reducing surgeries and have had a double mastectomy and hysterectomy & oopherectomy. I've experienced some pretty rough complications along the way from the surgeries - the worst being a DVT in my leg (blood clot) that went into my lungs. That was incredibly scary and I was sure I was going to die. Thankfully I didn't! My last surgery resulted in a slight and accidental overdose while I was in the recovery room, after surgery, and a code blue!
There have been more problems, but that sampling should give you an idea of why my husband and I are understandably nervous about another surgery.
The surgeon recommends I have about a foot of small intestine removed and about 4" of large intestine removed. This is all due to narrowing from years and years of undiagnosed/untreated inflammation. Also, there is current inflammation that the round of prednisone didn't take care of.
I'm starting to wonder if I've exhausted all of my non-surgical options, and that's the main reason behind this post. I'm hoping for some advice -- such as, have any of you, after having been advised to have surgery, decided to NOT have it, and had a positive outcome from that? I'm just at the point that I'm so confused, and not sure what to do. I could really use some words from experience, and greatly appreciate you're taking the time to read my post.
Teri
I was put on a 2 month round of Prednisone which didn't stop the pain and inflammation. During this 4 month period I've had so many tests (CT, MRI, 2 colonoscopies, endoscopy, small bowel follow thru, blood work, stool study, etc) by various doctors - I'm on my 3rd doctor right now. The first 2 were just not for me, but the 3rd I really like a lot.
So to get to the reason for my post... my G.I., after looking through all of my files, the test results, etc, she highly recommends that I have a bowel resection. I met with a surgeon yesterday, and he seemed really great - qualified, experienced, patient with me while I asked him 2 pages worth of questions. He also agreed that I need surgery. We talked about doing it the first week of January, once the holidays are past.
I'm also BRCA1 positive - this increases my risk of breast, ovarian, colon and other cancers. Because of this genetic mutation I've had preventative, risk reducing surgeries and have had a double mastectomy and hysterectomy & oopherectomy. I've experienced some pretty rough complications along the way from the surgeries - the worst being a DVT in my leg (blood clot) that went into my lungs. That was incredibly scary and I was sure I was going to die. Thankfully I didn't! My last surgery resulted in a slight and accidental overdose while I was in the recovery room, after surgery, and a code blue!
There have been more problems, but that sampling should give you an idea of why my husband and I are understandably nervous about another surgery.
The surgeon recommends I have about a foot of small intestine removed and about 4" of large intestine removed. This is all due to narrowing from years and years of undiagnosed/untreated inflammation. Also, there is current inflammation that the round of prednisone didn't take care of.
I'm starting to wonder if I've exhausted all of my non-surgical options, and that's the main reason behind this post. I'm hoping for some advice -- such as, have any of you, after having been advised to have surgery, decided to NOT have it, and had a positive outcome from that? I'm just at the point that I'm so confused, and not sure what to do. I could really use some words from experience, and greatly appreciate you're taking the time to read my post.
Teri
