And I don't miss it!
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Nope, don't miss mine either....happy anniversary!! 
Congrats on your anniversary!
Congrats on your anniversary.
I agree, that organ is way overrated!
I agree, that organ is way overrated!
It will be 17 years this August for me. Even though I was in remission most of the 23 years after my pancolitis diagnosis, by the time I had my colectomy, it was good riddance to bad rubbish.
No looking back for me either! Happy anniversary!
Jan
No looking back for me either! Happy anniversary!
Jan
It will be officially a 20 years anniversary tomorrow, July 10, 2012, that I had step 2, and the J pouch was "activated", so to speak. I believe tomorrow is also the 20 year anniversary of KangaRoe's step 1. KangaRoe and I were patients the same day, with the same team of surgeons, in the same operating room at Mount Sinai Medical Center in New York City, on July 10, 1992. The only difference was she was having step 1, while I was having step 2. We never actually met, we found this out when I posted about my 20th anniversary. So Happy Anniversary to KangaRoe as well. And hope your 20 years were as good as mine have been up to now.
Despite my recent testing suggesting my diagnosis was Crohn's Disease all along, my colon absolutely had to be removed, and was close to perforating when finally removed, so there is absolutely no second guessing on my decision.
Despite my recent testing suggesting my diagnosis was Crohn's Disease all along, my colon absolutely had to be removed, and was close to perforating when finally removed, so there is absolutely no second guessing on my decision.
Congratulations Spooky!! I also want to thank you for all the support you're providing people on this site. You're a wonderful resource!
kathy D:
kathy D:
hi spooky, this is my very first post here, i commend all of you for sharing your experiences, it gives comfort, support and guidance to us who are trying to learn about this very challneging process.
i want to ask you about your sub-total colectomy, which means the rectum was spared, right? but later you had a j-pouch, anyway?
my son (35) had a sub-total in dec of 2011 and is hoping to reconnect the ileum to the rectum if/ when the latter is free from dysplasia for this he has been using certain enemas that seem to be working. but needing a j-pouch is a high probability which he wants to avoid. i see that everyone on this thread is very happy about their pouch outcome, but we are dreading the high likelihood of complications that accompany or follow this procedure. not to mention the prospect of 8-10 bowel movements.
thanks in advance for your input, folks!
i want to ask you about your sub-total colectomy, which means the rectum was spared, right? but later you had a j-pouch, anyway?
my son (35) had a sub-total in dec of 2011 and is hoping to reconnect the ileum to the rectum if/ when the latter is free from dysplasia for this he has been using certain enemas that seem to be working. but needing a j-pouch is a high probability which he wants to avoid. i see that everyone on this thread is very happy about their pouch outcome, but we are dreading the high likelihood of complications that accompany or follow this procedure. not to mention the prospect of 8-10 bowel movements.
thanks in advance for your input, folks!
motherhen,
Yes, sub-total colectomy means the rectum was spared. For some patients (UC, FAP), all but 1-2 cm or rectum will later be removed when the j-pouch is created and attached. For others (cancer - sometimes) the rectum is left and the result is not a j-pouch, but a ileal-rectal connection where the rectum still performs its prior function. I cannot tell for sure from what you say whether your son will have a j-pouch or an ileal-rectal procedure.
From posts on this site, I will say that those without Inflammatory Bowel Disease (IBD) who have an ileal-rectal connection seem to do quite well. And 90% of those of us with a j-pouch are satisfied with the results. If you read the #s, the #1 likely complication is pouchitis - but this seems to not be as much an issue with non-IBD patients. Right behind this complication is bowel obstruction. Both are usually manageable.
The # of bowel movements can be frustrating - especially if his history pre-surgery didn't involve lots of urgency or trips to the bathroom. I did pretty well with my UC from age 12-35 and had flares about every 7 years that were usually brought back under control simply with sulfasalazine. So it was quite frustrating for me after all my j-pouch surgeries to go so frequently. However, things settled down over time and I probably average 5-7 times a day and don't really even think about it much.
Steve
Yes, sub-total colectomy means the rectum was spared. For some patients (UC, FAP), all but 1-2 cm or rectum will later be removed when the j-pouch is created and attached. For others (cancer - sometimes) the rectum is left and the result is not a j-pouch, but a ileal-rectal connection where the rectum still performs its prior function. I cannot tell for sure from what you say whether your son will have a j-pouch or an ileal-rectal procedure.
From posts on this site, I will say that those without Inflammatory Bowel Disease (IBD) who have an ileal-rectal connection seem to do quite well. And 90% of those of us with a j-pouch are satisfied with the results. If you read the #s, the #1 likely complication is pouchitis - but this seems to not be as much an issue with non-IBD patients. Right behind this complication is bowel obstruction. Both are usually manageable.
The # of bowel movements can be frustrating - especially if his history pre-surgery didn't involve lots of urgency or trips to the bathroom. I did pretty well with my UC from age 12-35 and had flares about every 7 years that were usually brought back under control simply with sulfasalazine. So it was quite frustrating for me after all my j-pouch surgeries to go so frequently. However, things settled down over time and I probably average 5-7 times a day and don't really even think about it much.
Steve
Thanks everyone! This site is great. I didn't have the luxury of having a lot of information before my surgery, under the circumstances, but I now want to share my experiences so that others won't have to go in completely blind like I did.
Yes, motherhen, my initial surgery was a subtotal colectomy, which means the rectum was originally left intact. It was performed on an emergency basis. At that time, the doctors weren't sure if I would be a candidate for the j-pouch, but there really wasn't time to evaluate. My colon was at risk of perforation and the priority was just to get it out and save my life. I was quite ill with the whole ordeal, had lost about 30% of my body weight within a period of less than a month. I was told I'd be re-evaluated again in 6 months for possible j-pouch. Unfortunately, I had complications including ileus and several partial obstructions, needed blood transfusions, had difficulty gaining weight, etc. Also, since the UC in my rectum never went into remission, I continued to have interintestinal manifestations, including eye inflammation and mouth ulcers. Because of all that, as well as some later admin issues with the surgeon's office, my j-pouch surgery was eventually delayed 2.5 years. At that time, they removed the rectum and created the pouch. I had my takedown 6 months later.
I don't find BMs to be a problem now; I go anywhere between 3-8 times a day. I only had UC for a month prior to my colon being removed, so I wasn't accustomed to a lot of bathroom trips. But I've adjusted really well. It's become part of my daily routine and most days I don't really notice it.
Yes, motherhen, my initial surgery was a subtotal colectomy, which means the rectum was originally left intact. It was performed on an emergency basis. At that time, the doctors weren't sure if I would be a candidate for the j-pouch, but there really wasn't time to evaluate. My colon was at risk of perforation and the priority was just to get it out and save my life. I was quite ill with the whole ordeal, had lost about 30% of my body weight within a period of less than a month. I was told I'd be re-evaluated again in 6 months for possible j-pouch. Unfortunately, I had complications including ileus and several partial obstructions, needed blood transfusions, had difficulty gaining weight, etc. Also, since the UC in my rectum never went into remission, I continued to have interintestinal manifestations, including eye inflammation and mouth ulcers. Because of all that, as well as some later admin issues with the surgeon's office, my j-pouch surgery was eventually delayed 2.5 years. At that time, they removed the rectum and created the pouch. I had my takedown 6 months later.
I don't find BMs to be a problem now; I go anywhere between 3-8 times a day. I only had UC for a month prior to my colon being removed, so I wasn't accustomed to a lot of bathroom trips. But I've adjusted really well. It's become part of my daily routine and most days I don't really notice it.
I realized I have gone ten years to the month since I had my colectomy and j-pouch. I am still kicking, cynical as ever, and have not slowed down.
Last year, I did a half ironman, wife and I went to New Zealand to do a @#$% harder than #$$% trail marathon. This year is South Africa Comrades 56 mile run (not sure I will be able to out run lions!)
Life goes on. Hope the next ten years will be as good!
Last year, I did a half ironman, wife and I went to New Zealand to do a @#$% harder than #$$% trail marathon. This year is South Africa Comrades 56 mile run (not sure I will be able to out run lions!)
Life goes on. Hope the next ten years will be as good!
Happy anniversary, Spooky.