Temporary Ileostomy to determine slow transit colon

This is my full story...
http://www.medhelp.org/posts/Undiagnosed-Symptoms/Undiagnosed-Digestive-Issues/show/1739309?personal_page_id=2196886

From what you read in my full story... my latest updated is that I had a meeting with one of the gi specialists and one of the colon surgeons at a hospital I have been having all these tests done at. They talked to me about all the results of all the various tests I have had and all that I have told them and they feel I have 2 issues going on

1.) Colonic inertia/slow transit = constipation
2.) SIBO/IBS = bloating, gas stomach aches

Due to my change in diet (FODMAP and no sugar, now white flour and no wheat) only effecting the bloating and gas stomach aches and seeing no improvement in the slow transit/constipation area.. they do believe that the sitz marker test was accurate in diagnosing I also have colonic inertia.

They told me that the only way to be sure if the large intestine is definitely not working is to do a temporary ileostomy 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 and attach my small intestine to my rectum. The temporary ileostomy would be removed and I would just live with going to the bathroom all the time vs never going.

Did anyone else go through this before having their large intestine removed. It means 2 - 3 surgeries for me and I am debating the pros and cons.

[patient915]

I would say that there are some tests that could be done first (before surgery) to determine how well your large intestine is working.  Have you had an anal-rectal manometry?  Have you had a colonic manometry?  Have you had a sitsmarker test?

[ng1031]

all the tests I have had are on the link I refer to as My Story.. I have had over 14 tests.

[mammo]

I know there are many people who suffer with extreme constipation that opt to have their colons removed.  This is a very drastic measure but if they have exhausted all other tests then this may be the only way for them and you to know if your colon is the issue.  Before making a decision check out the website below to see if everything has been done before taking such a drastic step.  I'm also very big on second and third opinions.

http://www.constipation-remedies-for-all.com/colonic-inertia.html

I had two sons and a grandson have their colons removed, and although life altering, my son lives a very fulfilling life with no colon. I wish you all the best!

[patient915]

Can you please tell me if you have had the tests I mentioned?

[ng1031]

thank you for the added info.. as you can tell from my story link.. i have had over 7 doctors opinions... I am gonna check out that link you sent me. And thank you for the encouraging words

[ng1031]

Wow Mammo this article is a very good one! Thank you!

[Mbski]

Hi I  have had the surgeries to remove my colon 13 years ago.  This was due to severe ulcerative colitis that would not respond to medication. I had 3 surgeries as I was so sick. I have had a fully functioning jpouch for 10 years and do not regret my decision and have thanked god every day for having this option.   For the record u do not go all the time. You have control of your bowel movements as you still have the muscles.   I have more freedom now than with my disease. Yes the 2 years with the colostomy bag were an experience but i managed. I have only had 2 infections in 10 years and no other problems. If you would like  to speak more about this I would be happy to.

[ng1031]

Now see I was told I would only have a colostomy bag for about 4 - 6 weeks to "test" to see if my colon was working or not. Then if I feel better and notice a change without the large intestine they would remove it. They said depending on the incisions and all that I might have to keep the bag a little longer why the rectum heals etc and then go back into have the bag removed and the small intestine connected etc. Is that what you experienced? I am nervous of something going wrong and I be stuck witht he bag for life even though I was told it was temporary.

thank you for your input!!

[mammo]

Hi.....both of my sons had their colons removed, one at 12 and one at 16...then my grandson at 10.  They had their colostomies for about 6-8 weeks and then they were reconnected.  I don't know why anyone would have to wait two years, this surgery is very common and is often done in one step now.  But the one step wouldn't work for you anyway since you may not have your colon removed.Your doctors are being very honest with you in telling you what to expect. If you have your colon removed you will have many bowel movements a day until your body adapts and you learn which foods affect you and which ones don't.  Then you can expect up to 10 a day, but you can live a normal life.  I lost my oldest son and grandson due to something unrelated but my younger son (41) is doing great without his colon.  He is a marathoner, ultrathoner, mountain biker, and long distance speed hiker.  He's preparing right now to leave next week for a month in the Sierras hiking.  He says it's all about attitude!  I hope this helps and wish you all the best!!!

[ng1031]

wow Mammo this was very encouraging!!!!!!!!

I have a personal question...

For those of you who have had your large intestine removed and replaced with a j pouch (small intestine hooked up to your rectum).. I understand that it takes some time to get use to going to the bathroom ALOT.. any stories of how bad this is and how long it took to get use to or your body to adjust. Also I have a fear.. its a weird one but its life.... did anyone have accidents during things like sex???

[abdominalmess]

most important - did you have a defecography test?  VERY important to 1) assess perastalsis in the colon, 2) pelvic floor function, and 3) if your sigmoid colon/rectal canal and anus have sensation to evacuate.  

[ng1031]

Yep.. the first surgeon I went to would not do the surgery until I went to the GI specialist and had these looked at.

I had the following done..

8th test) Sitz Marker Xray = the rings passed my stomach and small intestine but did not leave the large intestine. There were 19 rings visible in the large intestine on the last xray and they said the others could be in there but because I was so backed up 19 were what they could count as definitely visible. I didn't have a BM during the week of the test so I know I didn't pass any.

9th test) anal manometry = pretty normal results. A little loss in sensitivity but nothing to be alarmed about. The Gi specialist concluded that it was a normal test result

10th test.) barium defecography = shows that I have anterior rectocele. I saw 2 specialists including a urogynocologist and they both had the same conculsion on this.. they said that its a very small one and one that most woman have and don't even realize they have it. No surgery is needed to fix it and they both feel without a doubt that it is from straining and is not the reason for my chronic constipation issues. They feel it is a result of them. I was told by the 2nd surgeon that it would not interfere with the total colectomy.

[DH1]

I know this might sound dumb, but did you do research on the hospital and the doctors that you went too. Did you get another opinion? I don't know where you live but I would definitely do research on all of this. I know the Cleveland Clinic has one of the best colorrectal surgeons around. If you can go there I would get an opinion from them first before you do anything.

[ng1031]

Yes I have gone to various doctors in various clinics/hospitals and well known universities

[DH1]

Well  that's good, ask your doctor that wants you to do this, if this was a member of your family, is this what you would have them do? Things are just not that simple and it is your life. My husband had colon cancer, everything is great now, but his doctor said what she wanted to do and said if this was someone in her family this is how she would proceed. We both trusted her and we did what she suggested and she was right.
So good luck with what you choose.

[DH1]

I forgot to tell you my husband also had a temporary ileostomy for 3 months and things went well with it, he just had the surgery to undo it. It will take a while to get back to normal with his stool. It has been a little over a week and he has been waking up and going to the bathroom about 8 times during the night. But they say this is normal it will get better.

[ng1031]

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!!!