Re: Short Bowel

From: Traci Genz (tracigenz@yahoo.com)
Sun Aug 11 10:35:29 2002


At Wed, 7 Aug 2002, Janice Simpson wrote: >

Hi Jan, I'm glad to hear from you! Your short bowel sound like mine! I had a partial hysteromcy in '93 (lapscopy surgery) then I developed a bowel obstructin. It was only a nick at that time. I have noticed some foods were hard to digest but I felt fine again. Then in Jan of 99 I had an emerency surgery to remove a ruptured tumor on my ovary. They saw alot of adhesions when they were doing surgery and hoped it would dissolved by the NG tube (familiar w/that?)It didn't and had 5 resections of my small intestine and surgery was 9 hours long. I was hospitalized for 6 weeks and still couldn't digest food like they were getting stuck in my stomach. I went home w/the suction machine for a month (I had a NG inserted in my stomach). When the baker tube (supposely to keep the adhesions away) and NG tube, I was able to eat food again. But during that time and up to the summer of '00, I still wasn't feeling good, had pain, vomited at times and felt weak. The surgeontold me there isn't anything wrong and to eat clear liquid. I was hospitalized alot in the year of 99. In the summer of '00, I have had enough of pain, vomiting and weakness, I went back to my internal medicine doctor and I had the upper GI test (drink barium) and it was partially obstructed so I saw a different surgeon. SHe is SO WONDERFUl and I wish I had her w/my previous surgery. She did the surgery and it was a nightmare, 11 hours long and she told my family I wasn't expected to survive. If I did, I would have long term complications. Well, after a week in ICU, I was moved to a differnt nursing ward for another 5-6 weeks. I had tube feeding, TPN, etc...I went home w/those as well. I had to follow a special diet (no sugar, no dairy products and very low fat). AFter 5 months, I was able to be disconnected from the tube feeding and TPN. I thought my problems were gone even though I hate my loose bowels and the diet. It took a year before I actually felt good. I have now been diagnoised with CELIA disease (gluten sensivity) and I will have to follow a gluten free diet. It is bad enough of the foods I can eat now and this? I know the feeling of you having to cancel some events because of the diarreha. Sometimes I feel like it controlling my life. I used to be so active and socially. I used to run but I have trouble w/my bowels so I'm just walking 2 miles a day. Eating out is no fun either. I used to live on cheesburgers, fries, pizza, beer and you name it! Now, I eat chicken breast w/o the heavy sauces and no french fries...I'm have gotten used to it but now I have to follow a gluten free diet as well....Good grief...Have i suffered enough??? Did you go to the Nutrition Center in MA to help w/your SBS diet? When I came out of surgery, my dietician & surgeon obtain a copy of their diet and that is what I'm eating now. Are you on antibotics for the common side effect of overgrown bacteria in the colon? Well, I think I have typed enough...Hope to hear from you again.

Hi Tracy, > I didn't get your e-mail sorry but here goes. I have had short bowel s nce 96. I have tried all the meds the Dr's put me on and I can't really remember the names of them but none of them work. The only thing that h s helped me at all has been paregoric (an opium product). I take this o ly when I knew I would not have access to a bathroom. If I know I am go ng on a trip (1 hour or more) a few days before I just have liquids. Du to the adhesion I can't eat anything with any substance so I normally e t mushy type foods anyway. This way my bowel is pretty empty and I take the paregoric the night before. This slows down the intestine a bit (no much) but enough to have a little control of when you have to go to the bathroom> I know where every bathroom is in every store and at many tim s have needed to use them. So in a nutshell I have to plan everything I do. It's funny I was talking to Nancy and Millie last night and told th m that I was ecstatic with my new meds and not just because of the pain ontrol. One side effect of Percocet and Trazadone is constipation. Wel guess what! For the first time in 6 years I am having normal BM's, I m not constipated but now have more control of the need to go. I am like a kid at Christmas. I live near Boston and the 18 of August we are goin to Nova Scotia to celebrate our 30th anniversary with a couple of frien s that understand my adhesions and the short bowel syndrome. I was real y scared to go on the trip because of the adhesions and short bowel but ow I feel at least the short bowel will not cause me as much trouble as efore. I had bought a box of depends to wear and I was mortified and cr ed and cried because I could not believe that I was going to wear them b t with not knowing where the bathrooms would be on the trip I didn't wan to take the chance(you know how panicky we get when we get the urge and we have to go NOW!!! This has been such a blessing and I plan to enjoy he side effects for as long

>as I need the meds. What my Dr. said was wh n I have the emergency surgery in 96 when the ob-gyn screwed up a d&c an then did a lap she cut up my intestes and I had 18 inches removed (that s not much) but the part they had to remove takes the water out of your tool. He said each part of your intestines has a job and the part of my intestine they removed just left too much of the water in my stool and t ere you go diarrhea 24/7. It has been so frustrating and demeaning. I h ve had to cancel many things in the past 6 years and now I feel like I c n try stuff as long as the adhesions behave. E-mail me back and tell me about your problems with short bowel and maybe we can work something out to help you. There are alot of trick I use. Like fasting and then the orning of going somewhere I would get up about 4 hours before and have a small bowl of cereal and sort of push out anything else that was there a d be empty for the trip. by a trip I mean only about an hour but due t the traffic around here I was terrified to get caught in a traffic jam no where to go). I don't know why but this helped somewhat. I am so so ry you have this condition because it is so frustrating and it really re tricts what you can do. Mail me back and we'll talk
>Your friend,
>Jan
>

>>>----- Original Message -----
>From: tracigenz@yahoo.com
>Sent: Wednesday, August 07, 2002 7:25 AM
>To: Multiple recipients of list ADHESIONS
>Subject: Short Bowel
>
>Hi ye all. I have had short bowel since 8/00 and would like to talk to
>someone that also has it. Janice Simpson, I hope you would respond to
>this. Helen Dyna told me about you. I sent an email to you and did not
>hear from you. Hope to hear from you soon.


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