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Colonic Inertia with Tortuous Colon - Is surgery my best option?
I am 30 years old and have been suffering with GI problems for the last 6 years. They consists of terrible gas stomach aches, bloating (to the point I dont fit in my clothes and look pregnant), girggling/trapped air in my chest, chest pains and the worst of them all.. severe constipation (don't go for 2 weeks and when I do its rock hard and barely anything). I have seen 4 different doctors getting various opinions that range from a regular dr who put me on Amitiza low dose and when that didnt work recommended me to see a gi dr. That GI dr told me "oh its just IBS..nothing we can do for you." Then I went to the city to see a dr at a well known university hospital and they ran a million and one tests on me...........
1.) Sigmoidoscopy Result = hemmrhoids internal due to straining, some irritation and redness but biopsies say no cancer
2.) Upper scope = some irritation and redness but biopsies say no cancer
3.) Mannometry = lower esophagus is weak causing the trapped air and pains (taking Aciphex and Gas X for this, avoiding gas causing/acid causing foods)
4.) Empty Stomach Study = stomach is emptying in a normal range
5.) Physical Therapy for pelvic floor dysfunction = not the cause of constipation. When this did not work I begged my gi dr to do a colonoscopy to set my mind at ease.
6.) Colonoscopy = they found I have a very long and very torturous colon.. my GI dr was not able to complete the whole thing.. she got to my ascending colon and had to stop. She says surgery is not needed unless there was a knot or blockage (pretty much on my death bed) but this definitely is why I am experiencing gas, upset stomach and bloating. I begged her to give me something for some relief now that she knew this was the cause. She took me off of Miralax and put me on a high dose of Amitiza. This time I didnt stop taking it because it didnt do anything but because it made me VERY sick. I missed more work because the side effects made me feel as though I had the flu (aches, pains, chills, hot flashes, headaches). I took it as instructed with a meal to not get nauseated which does help... but when ever I finally have a BM I become nauseated before, during and after. I still didn't go to the bathroom for a week or two so the side effects were not worth the results. I was then taken off of of it and put back on Miralax.
7.) Barium enema xray = because my colon is so long and loopy they had to fill me up with 3 bags of barium instead of 1 and had to flip me upside down for quite a long time to even get the test going. The results showed the same thing as the colonoscopy. Longest 2 hours of my life. Worse procedure EVER!
At this point the GI dr told me there was really nothing they could do for me but continue running more tests to eliminate other things. She continued to tell me that surgery was not an option even though my colon was so long, loopy and making my life miserable. I took it upon myself at this point to see the colon surgeon to see what he had to tell me etc as I kept reading and hearing about colectomy surgeries. The surgeon looked over all my files from all my various drs....
8.) Sitz Marker Xray = I have colonic inertia. My stomach and small intestine are working but my large intestine is not. I actually went to a colon surgeon after not getting any treatments answers from my GI dr.
My question is what can really be done for colonic inertia with a tortuous very long colon. The colon surgeon called and spoke with my GI dr whom I was trying not to go back to as I was done with getting no answers from her. He gave me the option to see a constipation specialist that she recommended at the hospital I had all the tests done at. Which I find funny that until now that I go and get another opinion then she recommends this specialist. She never once mentioned this specialist to me in all the times I saw her. She told him that this specialist could give me drugs not available to most doctors and try more tests instead of surgery. I really am not interested in experimental medications.. does anyone have any idea what he could possibly prescribe to me that hasnt already been tried? Amitiza and laxatives make me soooo sick. And I honestly dont see what else he can do for me?
My other option is to have a total colectomy surgery where my small intestine is attached to my rectum. Since my stomach and small intestine are working properly and its my large intestine giving me the issues.
I personally do not want to be a experiment for new drugs and I am done with having any more tests done on me (not to mention the dr bills) just for nothing to work for me and just for me to end up having the surgery after trying all that stuff anyways. I am highly considering the surgery.
I have spent a majority of my 20's being tested, medicated and my life being ran by how my stomach is feeling that day. I don't to spend my 30's this was as well!
If you are having success with colonic inertia and a tortuous colon and you are on some type of special regimen or medication please let me know. I am very curious for feedback on this as I make my decision. The more I talk to other people on the forums about the surgery the more I am thinking this might be the answer for me. I am scared about the frequent bm's but at the same time it is better then having waste in my body for 2 weeks at a time.
I just dont see that this specialist will have much to offer me.. unless anyone out there has any ideas on what they might be able to offer me.. I would like to hear them.
1.) Sigmoidoscopy Result = hemmrhoids internal due to straining, some irritation and redness but biopsies say no cancer
2.) Upper scope = some irritation and redness but biopsies say no cancer
3.) Mannometry = lower esophagus is weak causing the trapped air and pains (taking Aciphex and Gas X for this, avoiding gas causing/acid causing foods)
4.) Empty Stomach Study = stomach is emptying in a normal range
5.) Physical Therapy for pelvic floor dysfunction = not the cause of constipation. When this did not work I begged my gi dr to do a colonoscopy to set my mind at ease.
6.) Colonoscopy = they found I have a very long and very torturous colon.. my GI dr was not able to complete the whole thing.. she got to my ascending colon and had to stop. She says surgery is not needed unless there was a knot or blockage (pretty much on my death bed) but this definitely is why I am experiencing gas, upset stomach and bloating. I begged her to give me something for some relief now that she knew this was the cause. She took me off of Miralax and put me on a high dose of Amitiza. This time I didnt stop taking it because it didnt do anything but because it made me VERY sick. I missed more work because the side effects made me feel as though I had the flu (aches, pains, chills, hot flashes, headaches). I took it as instructed with a meal to not get nauseated which does help... but when ever I finally have a BM I become nauseated before, during and after. I still didn't go to the bathroom for a week or two so the side effects were not worth the results. I was then taken off of of it and put back on Miralax.
7.) Barium enema xray = because my colon is so long and loopy they had to fill me up with 3 bags of barium instead of 1 and had to flip me upside down for quite a long time to even get the test going. The results showed the same thing as the colonoscopy. Longest 2 hours of my life. Worse procedure EVER!
At this point the GI dr told me there was really nothing they could do for me but continue running more tests to eliminate other things. She continued to tell me that surgery was not an option even though my colon was so long, loopy and making my life miserable. I took it upon myself at this point to see the colon surgeon to see what he had to tell me etc as I kept reading and hearing about colectomy surgeries. The surgeon looked over all my files from all my various drs....
8.) Sitz Marker Xray = I have colonic inertia. My stomach and small intestine are working but my large intestine is not. I actually went to a colon surgeon after not getting any treatments answers from my GI dr.
My question is what can really be done for colonic inertia with a tortuous very long colon. The colon surgeon called and spoke with my GI dr whom I was trying not to go back to as I was done with getting no answers from her. He gave me the option to see a constipation specialist that she recommended at the hospital I had all the tests done at. Which I find funny that until now that I go and get another opinion then she recommends this specialist. She never once mentioned this specialist to me in all the times I saw her. She told him that this specialist could give me drugs not available to most doctors and try more tests instead of surgery. I really am not interested in experimental medications.. does anyone have any idea what he could possibly prescribe to me that hasnt already been tried? Amitiza and laxatives make me soooo sick. And I honestly dont see what else he can do for me?
My other option is to have a total colectomy surgery where my small intestine is attached to my rectum. Since my stomach and small intestine are working properly and its my large intestine giving me the issues.
I personally do not want to be a experiment for new drugs and I am done with having any more tests done on me (not to mention the dr bills) just for nothing to work for me and just for me to end up having the surgery after trying all that stuff anyways. I am highly considering the surgery.
I have spent a majority of my 20's being tested, medicated and my life being ran by how my stomach is feeling that day. I don't to spend my 30's this was as well!
If you are having success with colonic inertia and a tortuous colon and you are on some type of special regimen or medication please let me know. I am very curious for feedback on this as I make my decision. The more I talk to other people on the forums about the surgery the more I am thinking this might be the answer for me. I am scared about the frequent bm's but at the same time it is better then having waste in my body for 2 weeks at a time.
I just dont see that this specialist will have much to offer me.. unless anyone out there has any ideas on what they might be able to offer me.. I would like to hear them.
Herb wise there is a tea called Eaters Digest that helps me when my stomach is uneasy or hurting.
I am a 34 yr old woman. Giving birth to my daughter 5 yrs ago, everything(vagina, rectum, bladder, uterous, and even my intestines) prolapsed. I've had several reconstructive surguries, a hysterectomy, rectocele, cystocele, and a total colectomy. My small intestines are hooked up to my rectum and this wouldn't be so bad if I didnt have crohn's disease on top of everything. Even with taking Mirilac 4 times a day, I am still having problems defecating and was wondering if anyone else had a similar issues with this resection?
Also I was wondering if anyone else has ever had a problem with a colon transit study, Shortly after I had the study done, my large intestines were removed due to the colonic enertia. I never passed the tags(until recently) and they became lodged into the lining of my small intestines. I probably have a very rare case but it never hurts to ask!
Any advice would be greatly appreciated! Thanks!
Kris
Also I was wondering if anyone else has ever had a problem with a colon transit study, Shortly after I had the study done, my large intestines were removed due to the colonic enertia. I never passed the tags(until recently) and they became lodged into the lining of my small intestines. I probably have a very rare case but it never hurts to ask!
Any advice would be greatly appreciated! Thanks!
Kris
Wow I didnt have that issue with the colon transit study. I still had almost all the rings inside me on the 3rd xray. They were all in my large intestine. The surgeon that had the test order said I had colonic inertian but then another doctor said I didn't. So who knows ..
Well, I don't know what you ever found out, but I am in the same situation. I have an elongated and tortuous colon with colonic inertia and a rectocele. . I am seeing another surgeon on this Monday to see if the rectocele needs to be addressed. The surgeon stated that he believes this is secondary and that if it is not bad, they are not going to fix it until they absolutley have to. they said that this is something that gets worse with age and since I am only 36, they would prefer not to do it until later in life as with each surgery it gets less effective. So they will evaluate this Monday and if all is ok - they will schedule me for the subtotal coloctomy with ileorectal anastomosis.
Yes thats what happened to me. My rectocele is pretty normal from what my urogyno told me. So no surgery there. Right now I have removed sugars, white flours and wheat from my diet and my stomach aches and bloating have decreased. Still working on my constipation issues though.
Just an update..
I got into the Mayo Clinic in MN and finally am getting answers. I had a slow transit study that was a 48 hour one as well as an EKG more blood work and a colonic manometry test. I have a very long, verry loopy slow transit colon. My pacemaker cells in my right side of my colon are dead or dieing off and it is causing me to back up all the way to my small intestine. IBS and SIBO are no longer even diagnosed for me as the symptoms of those happen in patients who have slow transit etc. I was on Resolor for one month and that did not work. I am now setting up my surgery! The surgery I will be having is called laparoscopic colectomy with ileorectal anastomosis and I will not need a colostomy bag. My surgery will also take place at Mayo Clinic. Another 7 hour drive from home but well worth it! FINALLY getting answers!!!
I got into the Mayo Clinic in MN and finally am getting answers. I had a slow transit study that was a 48 hour one as well as an EKG more blood work and a colonic manometry test. I have a very long, verry loopy slow transit colon. My pacemaker cells in my right side of my colon are dead or dieing off and it is causing me to back up all the way to my small intestine. IBS and SIBO are no longer even diagnosed for me as the symptoms of those happen in patients who have slow transit etc. I was on Resolor for one month and that did not work. I am now setting up my surgery! The surgery I will be having is called laparoscopic colectomy with ileorectal anastomosis and I will not need a colostomy bag. My surgery will also take place at Mayo Clinic. Another 7 hour drive from home but well worth it! FINALLY getting answers!!!
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