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Colectomy without jpouch or ileostomy bag
Hello everyone. I recently had surgery to have my colon removed and did not need to have an ileostomy or other surgeries to create a jpouch. The surgeon removed my colon and attached my small intestine to my rectum. That's it. Almost everyon out there has had more than one surgery or has the bag, am I alone? Looking for others to compare outcome of surgery with.
I came to this site because I recently had a total colectomy and did not need a colostomy. The surgeon hooked up my small intestine to my rectum. All is working quite well - though I stick to a low fiber diet (cook my vegetables until they are quite soft, peel fruit, no berries and seeds, etc.). The main drawback, if it can really be called a drawback, is frequent bowel movements. I also find that I need to use Miralax quite regularly to keep things moving well. If my intestinal contents lack hydration I have the unpleasant experience of feeling the need to defecate without producing anything. With only a small intestine, I can't push feces out voluntarily as can be done from the large intestine. However I do find that taking deep breaths while going to the bathroom does help move things along if it's progressing too slowly. Inhalation, plus bending over from the waist, seems to cause my small intestine to move its contents along.
I came to this site because I recently had a total colectomy and did not need a colostomy. The surgeon hooked up my small intestine to my rectum. All is working quite well - though I stick to a low fiber diet (cook my vegetables until they are quite soft, peel fruit, no berries and seeds, etc.). The main drawback, if it can really be called a drawback, is frequent bowel movements. I also find that I need to use Miralax quite regularly to keep things moving well. If my intestinal contents lack hydration I have the unpleasant experience of feeling the need to defecate without producing anything. With only a small intestine, I can't push feces out voluntarily as can be done from the large intestine. However I do find that taking deep breaths while going to the bathroom does help move things along if it's progressing too slowly. Inhalation, plus bending over from the waist, seems to cause my small intestine to move its contents along.
I first want to say I hope you all are doing well. The physical and emotional toll any of these surgeries take are substantial.
I was paralyzed in May 1984 and spent 6 months in the hospital. After being discharged, my parents had me admitted to a rehabilitation facility in Jan '85 with hopes I would recover. The morning of my admission I woke up more sick than I had ever been but attributed it to stress. Over the next month while in the rehab facility I grew increasingly ill. The doctors told me I was a hypochondriac and I just had the flu. I was regularly ridiculed by the staff to the point I told my dad if he didn't have me discharged I could fit through the crack in the window when opened and I would jump. I had lost about 20 pounds and was only about 80 pounds when admitted.
He took me home that afternoon and the next morning took me to a gastroenterologist. Within five minutes he was certain I had ulcerative colitis but wanted to perform a colonoscopy immediately. I was diagnosed with a severe aggressive case of UC and it was recommended I have my colon removed. In 1985 the only option was an ileostomy. I was reluctant and afraid so I spend the next year in and out of the hospital taking medication which at that time was very limited. Aside from Prednisone which I believe is still often prescribed, I took Azulfidine which I do not believe is used much, if at all anymore.
Over the course of that year I was seen at multiple hospitals including Mayo Clinic and each time was told I needed surgery. One surgeon went so far as to tell me without surgery I would either die from toxic megacolon or cancer. During that same year, because I was in and out of the hospital so often, I became friends with other chronic or terminally ill kids. For the terminally ill kids, they had to options. It was simply a matter of time.
I became particularly close with one patient, diagnosed with Leukemia. We spent countless hours together sharing things you would not otherwise share. It was in part because of him I opted to have surgery.
As it turned out, when they opened me up I was toxic megacolon and because of that my surgery lasted 8 hours. We had been told to expect 4-6 hours and because of the time it took my parents were convinced I had passed away.
To this day there are two things I remember very clearly upon waking up. One, my stomach ache was gone. I had surgical pain and it was painful but noticeably different from my stomach ache. I supposed after having a stomach ache for over a year you forget what not having one feels like. The other thing I remember is despite not really being able to speak, whispering to my surgeon that I loved him. He thought it was the drugs talking but it wasn't. I couldn't have been more sincere. A couple days after my surgery my friend with Leukemia passed. He held on to make sure I was okay. I have no doubts about that.
I've now had the complete colectomy (including rectum) and resultant ileostomy for nearly 29 years. I've read posts here with respect to pain, physical appearance, etc. For those facing potential surgery or those who recently underwent all I can tell you is this. Having the surgery was the best decision of my life and one I regret every day. At some point that will make sense.
You are no less beautiful or handsome whether you wear a pouch or not. Anyone turned off by that is someone who was with you for the wrong reasons to begin. Post surgical pain subsides in time but the faster you get moving the faster you heal. If you are contemplating surgery, they better shape you can get your abdomen in, the faster the recovery. I had subsequent surgery years later from scar tissue that was strangulating my small intestine but I was incredibly physically fit at the time and my doctor told me I was too mobile. I realize exercise while sick is nearly impossible but if you, I strongly suggest it.
I am 41 now and have three amazing children who I love more than life. My eldest, a 14 year old girl, has never asked me much about my stomach. My younger ones, 4 & 3 year old boys have asked questions if I do not have a shirt on or am emptying my pouch and decide they want to raid the bathroom. But the questions stop after my shirt is on or I'm out of the bathroom.
I have been married twice; my first marriage was just two people getting married too young but she never had an issue with my stomach. When I met my second wife, she had no issue with my stomach either and would tell me she didn't even think about it when I was hyperconscious (especially during sex). Unfortunately she had other issues and was very physically, psychologically and verbally abusive and that has been more traumatizing than anything else; especially because she hurts my kids and the court system does not seem to care.
But with respect to the surgery, I look at it in the following way. I live in Chicago. My surgery was performed in 1986. I lived to see Michael Jordan and the Bulls win 6 championships which was exciting. I attended college on a wheelchair basketball scholarship, was a 2 time All-American, won a college national championship, was named to multiple USA Basketball teams and had the opportunity to play basketball in places such as England, Spain and Italy. Yes, there were times my punch came loose during games and I had to run into a locker room to change it. But as soon as I did I went right back into the game. My children are my life now and maybe because of that I've gone through physically, they will one day work in medicine looking for better cures. At a minimum, they will grow up knowing not everyone is the same (in fact my older son wears hearing aids).
I do very much remember what my UC felt like and I am thankful I was able to get rid of it. It was a horrible, painful, unrelenting and took all I had just to get through the day at times. I wish I didn't have to wear a pouch or that some of the procedures available now were available then. But wearing the pouch is the cost I pay to live and be rid of my disease. That's a cost worth paying. I think of it like the money I have to give my abusive ex. Well worth the cost to not have to be married to her. ;)
I was paralyzed in May 1984 and spent 6 months in the hospital. After being discharged, my parents had me admitted to a rehabilitation facility in Jan '85 with hopes I would recover. The morning of my admission I woke up more sick than I had ever been but attributed it to stress. Over the next month while in the rehab facility I grew increasingly ill. The doctors told me I was a hypochondriac and I just had the flu. I was regularly ridiculed by the staff to the point I told my dad if he didn't have me discharged I could fit through the crack in the window when opened and I would jump. I had lost about 20 pounds and was only about 80 pounds when admitted.
He took me home that afternoon and the next morning took me to a gastroenterologist. Within five minutes he was certain I had ulcerative colitis but wanted to perform a colonoscopy immediately. I was diagnosed with a severe aggressive case of UC and it was recommended I have my colon removed. In 1985 the only option was an ileostomy. I was reluctant and afraid so I spend the next year in and out of the hospital taking medication which at that time was very limited. Aside from Prednisone which I believe is still often prescribed, I took Azulfidine which I do not believe is used much, if at all anymore.
Over the course of that year I was seen at multiple hospitals including Mayo Clinic and each time was told I needed surgery. One surgeon went so far as to tell me without surgery I would either die from toxic megacolon or cancer. During that same year, because I was in and out of the hospital so often, I became friends with other chronic or terminally ill kids. For the terminally ill kids, they had to options. It was simply a matter of time.
I became particularly close with one patient, diagnosed with Leukemia. We spent countless hours together sharing things you would not otherwise share. It was in part because of him I opted to have surgery.
As it turned out, when they opened me up I was toxic megacolon and because of that my surgery lasted 8 hours. We had been told to expect 4-6 hours and because of the time it took my parents were convinced I had passed away.
To this day there are two things I remember very clearly upon waking up. One, my stomach ache was gone. I had surgical pain and it was painful but noticeably different from my stomach ache. I supposed after having a stomach ache for over a year you forget what not having one feels like. The other thing I remember is despite not really being able to speak, whispering to my surgeon that I loved him. He thought it was the drugs talking but it wasn't. I couldn't have been more sincere. A couple days after my surgery my friend with Leukemia passed. He held on to make sure I was okay. I have no doubts about that.
I've now had the complete colectomy (including rectum) and resultant ileostomy for nearly 29 years. I've read posts here with respect to pain, physical appearance, etc. For those facing potential surgery or those who recently underwent all I can tell you is this. Having the surgery was the best decision of my life and one I regret every day. At some point that will make sense.
You are no less beautiful or handsome whether you wear a pouch or not. Anyone turned off by that is someone who was with you for the wrong reasons to begin. Post surgical pain subsides in time but the faster you get moving the faster you heal. If you are contemplating surgery, they better shape you can get your abdomen in, the faster the recovery. I had subsequent surgery years later from scar tissue that was strangulating my small intestine but I was incredibly physically fit at the time and my doctor told me I was too mobile. I realize exercise while sick is nearly impossible but if you, I strongly suggest it.
I am 41 now and have three amazing children who I love more than life. My eldest, a 14 year old girl, has never asked me much about my stomach. My younger ones, 4 & 3 year old boys have asked questions if I do not have a shirt on or am emptying my pouch and decide they want to raid the bathroom. But the questions stop after my shirt is on or I'm out of the bathroom.
I have been married twice; my first marriage was just two people getting married too young but she never had an issue with my stomach. When I met my second wife, she had no issue with my stomach either and would tell me she didn't even think about it when I was hyperconscious (especially during sex). Unfortunately she had other issues and was very physically, psychologically and verbally abusive and that has been more traumatizing than anything else; especially because she hurts my kids and the court system does not seem to care.
But with respect to the surgery, I look at it in the following way. I live in Chicago. My surgery was performed in 1986. I lived to see Michael Jordan and the Bulls win 6 championships which was exciting. I attended college on a wheelchair basketball scholarship, was a 2 time All-American, won a college national championship, was named to multiple USA Basketball teams and had the opportunity to play basketball in places such as England, Spain and Italy. Yes, there were times my punch came loose during games and I had to run into a locker room to change it. But as soon as I did I went right back into the game. My children are my life now and maybe because of that I've gone through physically, they will one day work in medicine looking for better cures. At a minimum, they will grow up knowing not everyone is the same (in fact my older son wears hearing aids).
I do very much remember what my UC felt like and I am thankful I was able to get rid of it. It was a horrible, painful, unrelenting and took all I had just to get through the day at times. I wish I didn't have to wear a pouch or that some of the procedures available now were available then. But wearing the pouch is the cost I pay to live and be rid of my disease. That's a cost worth paying. I think of it like the money I have to give my abusive ex. Well worth the cost to not have to be married to her. ;)
Thank you! It was yet another awesome decision for me! It took a while but I'm doing well. I have my times and or days where I have to be closer to the bathroom but for the most part I got some of my life back. The stomach aches I used to deal with were horrific and those are no more, so I can not complain in that department. Glad you are doing well also. Hope it stays that way for us all. :)
Glad to hear you are doing so well. Yes bathroom trips galore but better than the alternative! That's my life to but you get used to it and you learn what you can and can't do.
hello ladi.....im glad ur surgery went well..................i guess we are both lucky to be alive now...thank goodness for modern technology..........my surgery was in dec of 01 in pittsburgh....cant say enough about the staff there!!
hi karen....im mike from pa...............i had my entire colon removed also in dec of 01.............luckily i also didnt need the pouch...hospital stay was 12 days and had too many tubes in and out of me to count..even an epidural for pain...short handed staff were great!...however i ended up going back in to hosp a few days after being discharged because of an abcess in my rectum...they inserted a small 1 inch tube about the size of a coffee stirrer to help it drain....but since then and 50 lbs lighter it was the best decision ive ever made...altho i was a imperative decision as ive dealt with ulcerative colitis off and on since 1978 when i was going on 23 yrs old...........i hope you are continuing to improve!
hello I had the surgery in 2006 entire colon removed and small bowel attached to my rectum so far so good it has altered my life some as to what i eat but im thankful to have had the surgery and thankful to be alive
hello I had the surgery in 2006 entire colon removed and small bowel attached to my rectum so far so good it has altered my life some as to what i eat but im thankful to have had the surgery and thankful to be alive
Lost the first half of my colon in '97 due to Cancer, continued to work as a Firefighter?Medic until '07 when I lost the remainder for the same. No pouch, no bag. Small intestine to rectum to complete. Many episodes of dehydration and "kidney failure" (no dialysis) over the years. Overall, I am now 16 years post colectomy, no big deal. I pretty much do as I please. Lots of bathroom time..yeah. yeah. Deal with it. And F*K cancer.
I drank Diet Pepsie in 1995 and had a severe reaction to it. After months of awful abdominal pain, diarrhea, tugging sensation in throat, etc. and after years of constipation, my large colon simply stopped working. After years of many tests, finally a sitz marker test showed that the large colon no longer functioned.
I was supposed to have a total colectomy in August 2010, but the doctor made a bad judgement call during surgery and left 2 feet of the large colon intact without telling me or anyone. There were post surgery complications because I had a blockage on 3 separate occasions. The doctor discharged me 3 days after the surgery even though I had a blockage and complained to the entire staff about my acute abdominal pain, but no one listened. The doctor told me to "deal with it". Three days later, I was in the ER getting my stomach pumped.
Months later the constipation returned. In January 2013 I had a colonoscopy and we learned that 60cm of the large colon remains to my horror. My new doctor asked the first surgeon why he left a portion of the large intestine inside me, and he replied "because I'm a man". I sought legal action but no law firm wanted to take the case. Since surgery, I've been having chronic headaches, fatigue, constipation, and generally feeling sick.
Now on October 2, 2013 I'm having the remaining section of the large colon removed. I'm optimistic and can only hope that all goes well.
I see from the many posts that I am not alone in dealing. Many others here have very similar issues and I wish you all the best. There's always hope. One day at a time. God Bless.
I was supposed to have a total colectomy in August 2010, but the doctor made a bad judgement call during surgery and left 2 feet of the large colon intact without telling me or anyone. There were post surgery complications because I had a blockage on 3 separate occasions. The doctor discharged me 3 days after the surgery even though I had a blockage and complained to the entire staff about my acute abdominal pain, but no one listened. The doctor told me to "deal with it". Three days later, I was in the ER getting my stomach pumped.
Months later the constipation returned. In January 2013 I had a colonoscopy and we learned that 60cm of the large colon remains to my horror. My new doctor asked the first surgeon why he left a portion of the large intestine inside me, and he replied "because I'm a man". I sought legal action but no law firm wanted to take the case. Since surgery, I've been having chronic headaches, fatigue, constipation, and generally feeling sick.
Now on October 2, 2013 I'm having the remaining section of the large colon removed. I'm optimistic and can only hope that all goes well.
I see from the many posts that I am not alone in dealing. Many others here have very similar issues and I wish you all the best. There's always hope. One day at a time. God Bless.
I drank Diet Pepsie in 1995 and had a severe reaction to it. After months of awful abdominal pain, diarrhea, tugging sensation in throat, etc. and after years of constipation, my large colon simply stopped working. After years of many tests, finally a sitz marker test showed that the large colon no longer functioned.
I was supposed to have a total colectomy in August 2010, but the doctor made a bad judgement call during surgery and left 2 feet of the large colon intact without telling me or anyone. There were post surgery complications because I had a blockage on 3 separate occasions. The doctor discharged me 3 days after the surgery even though I had a blockage and complained to the entire staff about my acute abdominal pain, but no one listened. The doctor told me to "deal with it". Three days later, I was in the ER getting my stomach pumped.
Months later the constipation returned. In January 2013 I had a colonoscopy and we learned that 60cm of the large colon remains to my horror. My new doctor asked the first surgeon why he left a portion of the large intestine inside me, and he replied "because I'm a man". I sought legal action but no law firm wanted to take the case. Since surgery, I've been having chronic headaches, fatigue, constipation, and generally feeling sick.
Now on October 2, 2013 I'm having the remaining section of the large colon removed. I'm optimistic and can only hope that all goes well.
I see from the many posts that I am not alone in dealing. Many others here have very similar issues and I wish you all the best. There's always hope. One day at a time. God Bless.
I was supposed to have a total colectomy in August 2010, but the doctor made a bad judgement call during surgery and left 2 feet of the large colon intact without telling me or anyone. There were post surgery complications because I had a blockage on 3 separate occasions. The doctor discharged me 3 days after the surgery even though I had a blockage and complained to the entire staff about my acute abdominal pain, but no one listened. The doctor told me to "deal with it". Three days later, I was in the ER getting my stomach pumped.
Months later the constipation returned. In January 2013 I had a colonoscopy and we learned that 60cm of the large colon remains to my horror. My new doctor asked the first surgeon why he left a portion of the large intestine inside me, and he replied "because I'm a man". I sought legal action but no law firm wanted to take the case. Since surgery, I've been having chronic headaches, fatigue, constipation, and generally feeling sick.
Now on October 2, 2013 I'm having the remaining section of the large colon removed. I'm optimistic and can only hope that all goes well.
I see from the many posts that I am not alone in dealing. Many others here have very similar issues and I wish you all the best. There's always hope. One day at a time. God Bless.
Hi i need advise. Last year, i went in to hospital with chrones disease, to have a small intestine surgery, to remove only 5 inches of inflammation. I was told only 5 inches would be removed.
The doctor, general surgeon , in emergency , lied to me and told me he was an expert with chrones patients. He did the surgery and punctured several areas of my large intestine-my large intestine was perfectly fine before he touched it. Realizing he had done it he tried to stitch back up all the holes, he was so careless that he forgot a few and stitched me back up. Once in my hospital room the nurse went frantic, for two days she kept at my surgeon told him , judging by the symptoms she does not think he stitched up all the holes, he told her he did , and she insisted he did not and demanded he do x-rays. Well nurse was right , and by time the stupid incompetent doctor came around to realizing it it was too late. Two days after my first surgery doctor took me in to an emergency surgery, i had fecal matter all over my body, he forgot to stitch up a few more holes he created. The two day delay destroyed my entire large colon and left me with an iliostomy bag. I went to new hospital and they said my large colon is completely destroyed leaving only 34 centimeters of it . I am scheduled to go back to hospital to do a re sectioning of my iliostomy. Any advise?
The doctor, general surgeon , in emergency , lied to me and told me he was an expert with chrones patients. He did the surgery and punctured several areas of my large intestine-my large intestine was perfectly fine before he touched it. Realizing he had done it he tried to stitch back up all the holes, he was so careless that he forgot a few and stitched me back up. Once in my hospital room the nurse went frantic, for two days she kept at my surgeon told him , judging by the symptoms she does not think he stitched up all the holes, he told her he did , and she insisted he did not and demanded he do x-rays. Well nurse was right , and by time the stupid incompetent doctor came around to realizing it it was too late. Two days after my first surgery doctor took me in to an emergency surgery, i had fecal matter all over my body, he forgot to stitch up a few more holes he created. The two day delay destroyed my entire large colon and left me with an iliostomy bag. I went to new hospital and they said my large colon is completely destroyed leaving only 34 centimeters of it . I am scheduled to go back to hospital to do a re sectioning of my iliostomy. Any advise?
I had a laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic on January 18th for slow transit constipation. I was suppose to be in the hospital for 1 week and ended up there for 3 weeks. I formed an ileus.. the most pain I have ever felt in my entire life. I was on decompression tubes.. one in my nose/throat to my stomach and the other inserted in my rectum through the small intestine until my body could do things on it's own. Before the tubes I was vomiting bile. I was on morphine drip and it still was not enough for the pain. It has been aweful. Now I am home and no more narcotics.. just tylenol which to me does nothing but I understand that the narcotics are not good on the stomach. Did anyone else form an ileus? The surgeon told me that it happens to 10% of people and that the type I had was very rare. He also scared me when he said there was no guarantee it would not come back later on.
I also formed a blood clot in my liver so now I am giving myself Lovenox shots in the stomac every morning. I go to a doctor on March 9th to start coumadin pills. Because of this I had to stop my birth control. They believe it could have contributed to why I got the blood clot during surgery.
I am going more frequently (which is great from never going at all or feeling like your being ripped apart when you go) but because I am still on the liquid diet the bm's are also liquid. From hearing other people's stories I am surprised I do not got a million times a day. How much I go is pretty tolerable. I am behind as far as food.. I should be on week 4 introducing foods etc but instead I am only a week into things. The doctor sortof started me over after the ileus cleared so I am still on liquid/soft food.
Now its a matter of trying to deal with the aches and pains and these cramps whenever my bowls decide to move. Did anyone else experience these cramps? They are aweful. The doctors say its the small intestine trying to figure out what to do and that if it's making noises and moving that is a good sign that they are still working. It might be a good sign but its painful and keeps me up at night. I also getting a shooting pain whenever I pass anything that is not liquidy.. like if my bowl has any bit of substance to it I get this shooting pain in my lower right abdomen. Anyone experience this? Doctors say its because my body is healing. It just makes me nervous as I really am scared of the ileus returning. They told me as long as I am not vomiting again, passing gas/bm and do not have a fever that I am ok.
Just curious if anyone else experienced anything similiar?
I also formed a blood clot in my liver so now I am giving myself Lovenox shots in the stomac every morning. I go to a doctor on March 9th to start coumadin pills. Because of this I had to stop my birth control. They believe it could have contributed to why I got the blood clot during surgery.
I am going more frequently (which is great from never going at all or feeling like your being ripped apart when you go) but because I am still on the liquid diet the bm's are also liquid. From hearing other people's stories I am surprised I do not got a million times a day. How much I go is pretty tolerable. I am behind as far as food.. I should be on week 4 introducing foods etc but instead I am only a week into things. The doctor sortof started me over after the ileus cleared so I am still on liquid/soft food.
Now its a matter of trying to deal with the aches and pains and these cramps whenever my bowls decide to move. Did anyone else experience these cramps? They are aweful. The doctors say its the small intestine trying to figure out what to do and that if it's making noises and moving that is a good sign that they are still working. It might be a good sign but its painful and keeps me up at night. I also getting a shooting pain whenever I pass anything that is not liquidy.. like if my bowl has any bit of substance to it I get this shooting pain in my lower right abdomen. Anyone experience this? Doctors say its because my body is healing. It just makes me nervous as I really am scared of the ileus returning. They told me as long as I am not vomiting again, passing gas/bm and do not have a fever that I am ok.
Just curious if anyone else experienced anything similiar?
Hello:
I had UC for 12 years that was not responsive to treatment. I ended up on 80mg or prednisone, 15 pound weight loss [was already "skinny"] and could not keep anything down except a few sips of water. I had bloody stools, emesis, cramping, and was in pain 24/7. I ended up having surgery with Dr Bruce Harms in Madison. Two surgeons performed a total colectomy with a J-pouch, which took 5 hours. I had a temporary colostomy for 3 months, and then had the colostomy take down surgery. This was in 2005.
Since then I have had several hospitalizations for bowel obstructions and another surgery in 2009 for a hernia repair and bowel obstruction. Even though I periodically end up in pain and hospitalized (every 2-3 years), I have not a single regret.
I have about 6 BMs per day, rarely are in pain, can eat almost anything, have rare incontinence, and essentially have my life back.
If you are an Ulcerative Colitis patient who is being advised to consider this surgical procedure, it is my opinion that it is worth it. Yes it is more than one surgery, expensive and takes months to recover...but for me it meant being able to live my life and immensely improve my quality of life. I believe I might have died without this procedure since I was so ill and malnourished by the time I had to the first surgery with the total colectomy.
---Former UC patient in chronic pain and not responding to treatment but now happy and carefree
I had UC for 12 years that was not responsive to treatment. I ended up on 80mg or prednisone, 15 pound weight loss [was already "skinny"] and could not keep anything down except a few sips of water. I had bloody stools, emesis, cramping, and was in pain 24/7. I ended up having surgery with Dr Bruce Harms in Madison. Two surgeons performed a total colectomy with a J-pouch, which took 5 hours. I had a temporary colostomy for 3 months, and then had the colostomy take down surgery. This was in 2005.
Since then I have had several hospitalizations for bowel obstructions and another surgery in 2009 for a hernia repair and bowel obstruction. Even though I periodically end up in pain and hospitalized (every 2-3 years), I have not a single regret.
I have about 6 BMs per day, rarely are in pain, can eat almost anything, have rare incontinence, and essentially have my life back.
If you are an Ulcerative Colitis patient who is being advised to consider this surgical procedure, it is my opinion that it is worth it. Yes it is more than one surgery, expensive and takes months to recover...but for me it meant being able to live my life and immensely improve my quality of life. I believe I might have died without this procedure since I was so ill and malnourished by the time I had to the first surgery with the total colectomy.
---Former UC patient in chronic pain and not responding to treatment but now happy and carefree
I had previous left-colectomy for severe constipation. My left colon was always loaded and bloated causing discomfort. All tests i.e. colonoscopy, Barium enema, rectal biopsy etc were normal. However no transit study, rectal manometry were conducted before left-hemicolectomy. A repeat barium enema reported 'grossly dilated and redundant sigmoid and descending colon but normal transverse and ascending colon'. Operating surgeon made a mistake and he did not take out whole of sigmoid colon.
My condition improved but I had to strain to defecate for an average 20-25 minutes. I always felt that my rectum was empty.
I went through more tests like rectal manometry, nuclear transit study which showed held up in recto-sigmoid colon. I planned a high-anterior resection with a surgeon in India for removal of 3 inches of remaining segment of sigmoid colon. but this mis-guided doctor out of his wild imagination did a J-pouch rectal anastomosis. He took out part of my healthy rectum and on top of it made a J pouch (15 cm long). Now I am experiencing that my rectum has become redundant (except when stool is watery) and stool is primarily stored in illeal pouch.This gives me a feeling of being constipated and I feel I have to strain to push stool from pouch to rectum.
Can anyone advise me, would it be a wise decision to get rid of this un-necessary pouch and have an illeo-rectal anastomosis done? I have 14 cm of rectum left.
My condition improved but I had to strain to defecate for an average 20-25 minutes. I always felt that my rectum was empty.
I went through more tests like rectal manometry, nuclear transit study which showed held up in recto-sigmoid colon. I planned a high-anterior resection with a surgeon in India for removal of 3 inches of remaining segment of sigmoid colon. but this mis-guided doctor out of his wild imagination did a J-pouch rectal anastomosis. He took out part of my healthy rectum and on top of it made a J pouch (15 cm long). Now I am experiencing that my rectum has become redundant (except when stool is watery) and stool is primarily stored in illeal pouch.This gives me a feeling of being constipated and I feel I have to strain to push stool from pouch to rectum.
Can anyone advise me, would it be a wise decision to get rid of this un-necessary pouch and have an illeo-rectal anastomosis done? I have 14 cm of rectum left.
I had a MI in April 2002 and lost 21 inches of my bowel. 10 years later, they are still loose. Unexpected and very loud. I can take 8 or 10 imodium just to go grocery shopping and town once a week. I must know where all bathrooms are at all times, and this has been my life for 10 years. The more I eat, the more I go, just like a baby. I do not visit at night due to this fact and the loudness of some of the events in the bathroom. It seems to be more ordorus or stinky since it does not stay in long enought to get fully processed. No match and floral spray and poo smell just don't get it if you are visiting, so you become isolated, depressed and a hermit at night. Wish it would get better but there's no hope, sorry this is my life from now on
So had a special doctor visit after hours with some of the staff (gi specialist and colon surgeon) at a hospital I have been having all these tests done at. They talked to me about all the results and all that I have told them and they feel I have 2 issues going on
1.) Colonic inertia = constipation/slow transit
2.) SIBO/IBS
they told me that the only way to be sure if the large intestine is working is to do a temporary jpouch for about 4 - 6 weeks. Test the waters and see if I feel better without use of the large intestine. If I do then we know the large intestine is to blame and they can remove it. They told me that they would remove the jpouch and the large intestine and then connect my small intestine to my rectum.
Did anyone else go through this before having their large intestine removed. It means 2 surgeries for me.
1.) Colonic inertia = constipation/slow transit
2.) SIBO/IBS
they told me that the only way to be sure if the large intestine is working is to do a temporary jpouch for about 4 - 6 weeks. Test the waters and see if I feel better without use of the large intestine. If I do then we know the large intestine is to blame and they can remove it. They told me that they would remove the jpouch and the large intestine and then connect my small intestine to my rectum.
Did anyone else go through this before having their large intestine removed. It means 2 surgeries for me.
Has anyone had there large intestine removed and had their small intestine attached to their rectum for colonic inertia and ended up with constipation after surgery? I heard that is a risk factor. That you can get the surgery but there might be a chance you will have constipation again one day. Also has anyone had their large intestine removed for colonic inertia and then their small intestine eventually give out on them? What happened then?
Go to the Cleveland clinic or Univ of Mich. See a few doctors and get several opinion about the reversal. If you get two like opinions, then that is likley the advice you should follow, whether it is the answer you want to hear or not. Not knowing you medical history, I don't see a reason you cant have a reversal. I had a reversal 8 weeks after having 14 inches of my colon removed and 3 inches of my rectum. I have a very good friend that had hers reversed after a few doctores told her no way. We both have inertia after, and risk of blockage, but otherwise fine. Talk to the sugeons about wanting to get pregnant as well. They will tell you best. I would ditch the doctor you have now, it doesn't sound like he has the skills to help you.
Best of luck to you.
Best of luck to you.
I am 34 yrs. old. I have been living with an illiostomy for 7 yrs now. I was diagnosed with Crohns disease. I had a total colectomy, two years later I had a sm. bowel ubstruction. Ya, I know its alot but I still want something done to get rid of this ostomy, I hate it. I live in Akron, OH, my surgury was done in Akron, OH by Dr Joel Porter. Everytime I see him, I ask , how can I get rid of this? His reply has always been " I will do nothing I think its to risky if you want something done, I advice that you go to the Cleveland Clinic in Cleveland OH." If something would go wrong, keep in mind that you are over an hour away" For 7 yrs now I am still embarrased that I have an ostomy and find it exhausting to be constantly hiding it.
The other factor that I am dealing with is, that I want a baby and if I would go ahead and follow through with this, I know that is pry out of the question for quite some time. My husband and I have already been trying for a good year and half but have had no success yet(using fertility treatments)
So I guess I am on the fence about the resection now just a little, I am sheduled for a scope of my rectum and sm. intestine on the 23 of Nov.
I am In need of some advice Should I even consider this surery or is impossible? My surgeon said that all the disease has been removed, and actually I have had no problems since the surgeries. I do know that I want to pursue this pregnancy thing, but i dont want to think what if, if something can really be done!!! HELP
The other factor that I am dealing with is, that I want a baby and if I would go ahead and follow through with this, I know that is pry out of the question for quite some time. My husband and I have already been trying for a good year and half but have had no success yet(using fertility treatments)
So I guess I am on the fence about the resection now just a little, I am sheduled for a scope of my rectum and sm. intestine on the 23 of Nov.
I am In need of some advice Should I even consider this surery or is impossible? My surgeon said that all the disease has been removed, and actually I have had no problems since the surgeries. I do know that I want to pursue this pregnancy thing, but i dont want to think what if, if something can really be done!!! HELP
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