Living without a colon

Hello Everyone, My name is Michelle and I came across all of your reviews and after reading them I thought oh my gosh, I’m not the only one going through this. I had my whole colon removed in September 2009 I don’t have a pouch as my surgeon attached my intestine to my rectum and since then my life has not been the same. It took a few months to get on my feet and then started feeling a little better, BUT then in April 2010 I had really bad pain in my upper abdomen, but was on vacation so I tried to ignore it, but when the day was over I couldn’t ignore the pain no more. My husband took me to the emergency room and they did a CT scan and found a small obstruction in my bowel. I had emergency surgery to construct the bowel. It has almost been a year now and my life has been a living HELL. Always in pain, especially at night, so this means never a good night sleep. Since 2009 I lost my job and had to go on my husband’s insurance so I don’t have the same colon/rectal surgeon that took my colon and had to get a new rectal/colon surgeon and he is the biggest JERK ever, as I don’t like him at all, don’t trust him at all, he has lied to my face three times, so I fired him. He pretty much told me that I had to live with this pain that there was nothing he could do for me, REALLY live with the pain nothing he could do for me. Well, since changing insurances I had to also get a new Primary doctor, so I go meet with her for the first time and before she came in the room she actually went and read ALL of my medical records, so she knew about the colon, the small obstruction, everything about me. I was so impressed just from that, so I explained all of my pain and she prescribed me Neurontin for night time then gradually I went on it during the day when tolerant as it does make you sleepy, and let me tell you it has been a miracle drug for my pain. Can’t believe the first time meeting a doctor that has nothing to do with surgeons, stomach, or rectal and helps me with the pain, and really cares about me. Now I think I have another small obstruction, so I need to find a new GI (YIKES) I live day to day as sometimes I have bad days, but have better days. I look forward to talking with you all. Thanks for posting your stories. Sincerely, Michelle.

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It's so sad to read stories like yours. I live in Canada...and our medical insurance is totally different. We are never forced to change Dr.s unless we want to. I have 'fired' one GI Dr. that told me he wanted me to see a psychiatrist because there was nothing wrong with me physically - I had had colon cancer many years before, and was having big trouble/pain in my abdomen. He said I was anorexic. I had been loosing weigh steadily due to severe diarrhea (20 - 25 x per day). I ended up having a massive obstruction, surgery and a very long recovery. However, kept loosing weight. My surgeon found another GI for me. She was my Angel. She did every test known to man...and came up with intestinal failure as my main diagnosis. Also, SBS, Bacterial Overgrowth, pseudo obstruction, etc. TPN was ordered ...and has changed my life totally. I've gained back 40 of the 60 or so lbs. I lost. My energy is slowly coming back, but it's only been 4 I'm thinking it will just take time. I'm encouraged to continue to eat to keep my digestive system 'working' even though my bowels do not absorb anything. This also protects my liver from damage from the TPN. I enjoy food, I just don't feel like I'm starving to death any more. I only eat when something appeals to me. The rest of the time I drink Ensure or Boost. I just wish you could find a Dr. like mine. She just wouldn't give up. When they decided to start TPN...I was only in the hospital for 11 days. I had my TPN nurses come to teach me the routine for two hours a day the last three days of my stay. I went home feeling a little bewildered. However, it doesn't take long to 'get it'. Keep looking for a good GI Dr. Ask your new Primary Dr. if she has any recommendations. She sounds like an absolute gem. Thank goodness you found her! I will keep you in my prayers and send you all my best and warmest hugs.
Love Kathie

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My Husband has a full colostom and my son (at age 9 hes 12 now) Had is colon inner rectum and a large percent of his small bowel out. He has a J-Pouch.. My boys Have F.A.P. They both live normal lives they just have had to make adjustments to life. Diet like they dont eat nuts corn ect anything that could clog or block them up. My Timmy (son) has tried to get his "stomach" noises under control as they always seem to happen when hes at school and the class room is quiet. I taught my son that this is something he has to deal with. I taught him this is his normal. My husband is another one. You would never know he has the colostomy. It has changed things a bit for him as far as lifestyle but again its "his normal"
Once you find a GI you like and trust things will smooth out..
Hugs hang in there..

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