Total Colectomy NOT Due To UC or Cancer

[sarahzito77]

Hello everyone....I'm looking for some advice/feedback and I'm just really sick of doctors so I decided to put this out there to people who have actually lived with this.
I'm currently 43 and about 6 1/2 - 7 years ago I started having transit issues - I would only go to the bathroom when I took a laxative. Usually I would give in after a month of not being able to go because when I did give in to a laxative I was out of commission for the next 48 hours. I did a lot of research of my own as to why I was having these issues and the different tests that could be done and then brought it to a GI up in Connecticut. He ordered a few different tests which concluded the the muscles in my colon just stopped working on their own. **I should note that I did have my gallbladder removed 2 years BEFORE my Colectomy** Also - Doctors don't seem to like it when you go to them with a solution or maybe you know more about the available tests than they do...doors will shut in your face.
I spoke with 5 surgeons about this and they were divided. Some suggested living on laxatives for the rest of my life (ummm no) another suggested bio-feedback and the other moved many states away so his opinion meant nothing to me. Bottom line -- no one would do my surgery. I ended up moving to South Carolina (which was already planned) and took ALLLLLL my tests and information to a surgeon in Charleston to get his opinion and after careful consideration he felt surgery would be the solution.
I underwent a total colectomy and didn't need a stoma - just a clean connection from my small intestine to my rectum. I know I am VERY lucky as far as that is concerned.
I healed very well - luckily - but here I am 5 years later and food affects me so badly. The blander it is the better off I am. If I eat things such as: tacos, seasoned steak, anything fried, anything spicy, anything fatty (and many other things I can't think of at the moment), I get VERY bloated (my entire mid-section is hard), I experience LOTS of pain and eventually hours later gas and then I'm stuck in the bathroom within 45 minutes after eating. After that's over I'm still pretty bloated.
Safe foods are peanut butter and jelly sandwiches, cereal and salads. I can't consume any alcohol; Beer makes me bloat something fierce, after 1/2 a glass, wine makes me throw up (wine makes you dehydrated as does living without your colon so becoming extra dehydrated in horrible) and liquor seems ok at first and then a few hours later I'm in the bathroom. Drinking isn't important to me at all I'm just adding it to this post so everyone gets the entire picture of what I'm dealing with.
After the first year of recovery I asked the surgeon what I could take for this and was told Gas X. That didn't work AT ALL. I tried Tums an hour before I ate and it didn't matter...nothing helps and what I can eat is incredibly boring and limited.
Does anyone have any suggestions? Has anyone experienced the same issues? Is there anything I can take or do to "prep/coat" my body before I eat?
I appreciate your time reading this and I look forward to hearing from anyone even if there is no solution you know of.

[Lee]

So sorry you are going through this. 3 things I am going to suggest.

1) BRAT diet: Bananas, Rice, Apples, Toast. This is more of a short term solution. A very bland diet.

2) If you have not already done so, check out the UOAA (United Ostomy Association of America). Might be something you want to look into. Here is their web site.

https://www.uoaa.org/forum/viewforum.php?f=2

Introduce yourself, maybe someone there has walked in your shoes. Maybe a colostomy bag might be a solution. Again introduce yourself & see if someone has a solution.

3) Not sure if this will help, butt use search engine at top of this forum and look up "daily enemas". A lot of people have found success with this. Not sure if this will help you, butt am throwing it out there just in case.

Good luck,

Lee

[sarahzito77]

Thanks for your reply Lee!! As far as an enema is concerned I don’t think I need that - I have no problem going to the bathroom it’s just everything that happens before(bloating, abdominal pain, and overall being uncomfortable).
You mentioned a pretty basic bland diet that reminds me of what I was allowed to eat after surgery for the following few weeks and I know you mentioned it being a short term solution. This is now 5 years later so I wonder if I need to revert back to that? I pretty much have to eat a bland diet or I suffer. I feel like it doesn’t have to be like this.
Thank you for the link and I will absolutely check it out and again I appreciate your time!
~Sarah

[Phuong]

Have you seen a nutritionist? I wonder if TPN would be recommended for your situation. Maybe it’s worth asking your doctors about.