Colonic Inertia with Tortuous Colon - Is surgery my best option?

[ng1031]

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.

[ng1031]

Anytime. This is a huge decision to make and it is good to have people to ask who have gone through it cause it can be really scary! I would have been lost without my support group over at the Inspire group. There is a AGMD GI Motility Disorders Support Community on that site that is amazing. Helped me a ton and well still does. I am suffering now from post surgery bile reflux. I say post surgery as I never had this before my surgery. Fun Fun. But it sure beats anything I had wrong with me prior to my surgery.

[ConflictedReSurgery]

This is all so very helpful - I can't thank you enough.  I believe I've had most of the tests that you listed, some more than once.  I am working on getting a second opinion and trying to race the clock before I have to move for my job. Since I'm able to go each day I take all the meds the night before (even though I'm up a lot feeling pain/ bloated etc), whereas you were not able to go with the meds, I can understand why the doctor I have said it's a quality of life choice instead of being required like yours.
Just wish I really knew how my body will respond since this is the end of the road/ last option...
I am hoping that I can get a second opinion soon to maybe feel more certain of the decision.  You were really smart to have gotten so many opinions!
Also, thank you for the tip on Gatorade versus water! I will have to make a Costco run :)   You''re exactly right, getting the flu on top of it all would be a disaster.
Hope you're having a great weekend - thanks again for all of your insights and sharing - you've been a godsend!  

[ng1031]

If you really feel you should get a 2nd opinion then do so. This is a no joke surgery. And once the large intestine is gone its GONE! I got my another opinion before going through with mine. I actually sent my story to a motility specialist at Mayo Clinic who got me in and my husband and I drove over 8 hours to see him. He ran tests on me at Mayo that were not available here in IL. I was getting way too many mixed messages from doctors out here and was scared I was not making a good sound decision. The thing for me is that meds did't do anything for me. I would take things like Miralax, Laxatives, Fiber you name it and still not go for 2 - 3 weeks and then when I finally did it would be 2 - 3 weeks worth all at a time due to the medication all catching up to itself. I was finally just put on Miralax just to make the stools soft and easy to pass. My final medication was given to me as a last shot before moving forward with surgery. It was from the UK and I had to have it filled in Canada cause its illegal here in the US. It did nothing for me but make me sicker. When the motility specialist saw that he was like if this on top of Miralax then nothing is going to work and surgery is the clear option. Then I knew I had tried EVERY route and it was time to finally move forward with the surgery.

By the time I made my decision to have surgery I had seen well over 14 doctors/surgeons and had the following tests done...

Ultrasound of gallbladder
Blood Work (redone by every dr I saw)
Rectal Exams
Flexible Sigmoidoscopy
Upper GI Endoscopy
Esophageal Manometry
Gastric Empty Stomach Study
Physical Therapy with Biofeedback
Colonoscopy
Barium Enema Xray
Sitz Marker Xray
Anal Manometry
Barium Defecography
Urogynocologist complete gyno/rectal exam
Glucose Hydrogen Breath Test
48 Hour Transit Study
Colonic Manometry

After surgery during my complications I had to have the following additional tests...
CT Scan
Abdomanal Xrays
Hypaque Enema Xrays
Chest Xrays
EKG's

Another thing I wanted to tell you is that if you do have the surgery.. I highly suggest not ignoring your urges to go. If you feel the slightest bit like you might need to go.. that is your time to get up and go to the bathroom. Don't wait it out. I learned that is the best method to the madness. Waiting until you really have to go is not good. Like I said before if your rectums is all good you can hold it. The thing is the consistency will always be soft or watery because you no longer have the large intestine to absorb the water. So for me I just never ignore the urge and if I don't go and it was just gas.. well then so be it ha ha ha.

Another thing.. you will live off of Gatorade and Powerade to stay hydrated. Some doctors tell people to drink alot of water but after I got my 2nd surgery he explained to me that water doesn't do much but make your mouth not dry ha ha. He said with no large intestine if you drink water there is nothing in the water to absorb into the small intestine and the water just goes right through you. If you drink Gatorade and Powerade you absorb the electorlytes before it passes through you and it keeps you hydrated. You want to do this EVERYDAY! Because if you were to get the flu and you haven't been doing this.. you can expect to be in the hospital on ivs getting you rehydrated again.

[ConflictedReSurgery]

Gosh, we seem to have a lot in common relative to all of the job stuff.  I'm in an incredibly demanding/ stressful job, and it's been hard for me to set limits.  I'm single, and they look at it as I'm always available... and I haven't made myself unavailable in fear of political repercussions.  I feel like I'm rushing my decision to get the surgery because have to move to Sacramento for the job from Los Angeles.  Today I got approved by the insurance company for the second opinion, but that dr can't see me until after the first of the year.  Trouble is, to keep "on schedule" with work/ new position, I need to have the surgery (which is scheduled) on 12/4, to start job in mid January.  However, I really think I need to get a second opinion before going through with all of this.  Actually, I didn't know that a pathology report could be run to test the functionality of the nerves in the intestine until I read your note tonight.  I've had the balloon test, sitz marker test twice, some hydrogen test... maybe others - those are the ones that come to mind, but they haven't tested the functionality of the nerves from what I know.
For me, the meds that I am on each day (a ton of magnesium, laxatives, and Linzess which is a new drug as of Jan 2013) do help me go, but they also make me incredibly bloated, distended, and go approx 10 times through the night and early morning (bc I take them before bed... as not to have to go during the day at work).  So, I go, but feel sick nightly and sleep deprived.  Overall, it's really a quality of life issue... how long can I tolerate lack of sleep and feeling so sick/ bloated/ painful distension etc.
Geez, I wish my crystal ball and ability to predict the future was working properly!! haha
It sounds like you really don't get stopped up much anymore, right? Do you also feel like you empty out pretty well without excessive walking/ exercise to get things moving?  
That's another thing- I walk about 4 miles daily to get things moving before work which adds to the fatigue.
Just wondering if you feel like you eat more normally and can get emptied out without too much effort/ special diet/ regime?
I feel so lucky to have found you for advice - thanks so much again!

[ng1031]

Not a problem at all. I have no shame talking about any of this stuff. I can tell you what things looked like in the toilet bowl last night if you really wanted me to ha ha. I think you just become desensitized about this stuff when you have issues and you find others that make you feel less alone. I think my husband has finally realized that he is going to hear me talk about this stuff no matter if he wants to hear it or not ha ha. If I tell him I haven’t gone to the bathroom though he freaks out and thinks we should go to the ER for a scan ha ha. And then I eat dinner and I go ha ha. I went through so much he just doesn’t want to see me like that again.

So for me my 2nd surgery started the recovery process all over again (which really sucked). They told me that from the time of my 1st surgery until the 2nd surgery my body was never really in the recovery mode but in chaos mode not knowing what to do. I had my 2nd surgery on March 2nd and was told I could go back to work again on April 19th. I ended up running out of FMLA. Cause my 1st surgery was on January 18th. I was suppose to be off for approx 6 weeks give or take but then I ran into all the complications. Then I had to have the 2nd surgery etc.  I almost lost my job. 13 years I had worked for them and they had the nerve to tell me that FMLA ran out so if I didn’t come back the first week of April I could be fired. All while I was in a hospital bed. They pulled some strings to get me to keep my job. I went back on April 9th working from home but ended up quitting the next week. The stress of that job was putting too much toll on my health. I had already been applying places before my surgery and during recovery one of those places contacted me and interviewed me over the phone. I started my new job in another office (not from home) on May 1st.  I just told them when I interviewed what was going on and they just asked if I had any special need requirements. I just told them just don’t write me up for too many washroom breaks ha ha. But for the most part I have been fine here at my new job. A doc in pay but less stress and I really think that is why I am recovering now as well as I am. Had I been at my other job I don’t think I would have been this far along. Stress is a very very terrible thing on our health. I feel it had a lot to do with why I had issues to begin with.

The pathology report after my surgery showed that I had barely any nerves left in my large intestine and that it was pretty much dead. So for me surgery was really my only option.

[ConflictedReSurgery]

I can't thank you enough for all of the info and for the details.  It is exactly what I need, and I appreciate your willingness to share it.  I know it's not the most pleasant thing to talk about, but what a help it is to hear! All of what you've written have been concerns of mine, and you make it seem so natural and doable.  I requested the second opinion and I'm waiting on that authorization. After reading your story and progression, it makes me want to go forward with it. How soon was it after your second surgery (if you recall) did you feel like you could control your urge to go enough and drive/ feel strong enough/ confident enough to return to work?  My doctor said 8 weeks before I can lift whatever I want but I can go back to work "whenever I feel like it."
I don't know if I'll ever have an opportunity to have kids, but I have to believe that doing the surgery and not having to take all of these drugs to go would be much healthier for a baby... in fact, I probably couldn't be on all of these drugs and be pregnant.
Thank you for your advice about the wipes.  I think it's a great suggestion, and I have carried them with me since my first surgery in Jan '13.  The surgeon did say that since I already had surgery due to rectal prolapse makes the colon removal surgery more complicated.  It's that tidbit coupled with her statement that she doesn't know what she would do in my situation that makes me so uncertain.  (She said it comes down to a quality of life issue).  However, the being "up all night in pain, then finally going"... and going and going is taking a toll.  I don't recall the last time I ate normally or slept more than 2 hours consecutively.
Again - thank you so much for all of your information; it is invaluable to me!