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are you suffering with short bowel syndrome?

Posted , 4 users are following.

brightside2016
brightside2016

HI

following surgery due to colitis I am left with short bowel syndrome

are there any others out there?

would be great as I am struggling and need advice!

thanks

0 likes, 7 replies

7 Replies

  • Actiquser
    Actiquser brightside2016

    Posted

    Hi I have short bowel syndrome due to radiotherapy damage

    I have 110cm left of small bowel plus the ileosecal valve.

    I was on Parental nutrition for 3 years due to multiple obstructions and inability to have an op due to multiple pulmonary emboli. I have had multiple complications. Prior to that nasogastric feeding. On a positive note due to good health care and a fantastic dietician I now have a life.It has only taken 3 years to get here.

    I still see a dietician monthly. She has been a life saver. She specialises in Short Bowel Syndrome.

    I have a 1.Reduced fat diet. (5g for snacks 20g for a meal)

                  2.Lactose free diet

                  3.Gluten free diet

                  4.Lots of supplements Vitamins, minerals Ensure drinks

                  5.Hyperbaric Therapy.

    Life has changed from incontinence to being able to go out so feel free to ask any questions. I now manage to maintain my weight and am not in hospital several times a year.

    One thing is you will never be fat.

    • brightside2016
      brightside2016 Actiquser

      Posted

      Hi

      Thanks for your message. It shows there cant be many people with this. I have a ileostomy bag but they are hoping to remove it so I may be incontinent when I have it done. I have an overactive stoma and my output is liquid more frequent than not. Losing more weight for now doesnt bother me that much as I am exact on my ideal weight BMI.

      I dont really understand most of your message as I dont know many medical terms, I do however understand that you have been going through hell! 

    • brightside2016
      brightside2016

      Posted

      Can I ask why they reduce lactose & gluten?

    • Actiquser
      Actiquser brightside2016

      Posted

      Hi I expected to wake up with an high output ileostomy which means a bag is useless and you are connected by wide bore tubing to a bag you carry arround. I would have been suicidal with that so it was a big releif. I met 2 people with this and they both turned to the wall and never left their home. I don't blame them.

      I was inconinent due to high output liquid after my op, if that happens do not despair. I take Loperamide/immodium 4 tabs 4 times a day and codeine at night.

      I use to got to the toilet about 8 times overnight for liquid stool and the same thro the day but no more due to the medication and lactose and gluten free diet. I had to be near a toilet at all times.

      I am lactose intolerant and gluten intolerant due to the lack of small bowel to absorb and take a pancreatic enzyme to try to reasorb bile as you loose that ability too. This also affects your ability to digest fat so you will need a low fat diet. You need vitamin injection and suplements.

      You will probably be the same. I crave dairy product but its the thing that upsets my stomach and gives me sterrethorea or fatty poos that float

      Also any medication you take will have to be absorbed under your tongue or injected as you do not absorb much but that will depend on how much of your small bowel they removed. Its usually about 6 meters long I had 5 meters removed. I had to put up with being connected to an intravenous infusion 12 hours overnight with a drip stand and parental nutrition and 8 trips to the loo with diarrheoa and urgency and often did not make it in time. This went on for 3 years.

      I hope I havn't put you of as there is a life ahead for you if you get good support and a good dietician.

      My life has changed dramatically with my new dietician. I no longer have my drip overnight and I can eat. I know its a lot to take in . I found out by joining forums and by far the best for me was the Pelvic Radiation Disease Association in Uk. People like me have survived cancer and found out that the medical proffesion do not know what to do with us and our problems.

      They also gave me fentanyl for pain which is highly addictive and 50 x stronger than Heroin and I am trying to reduce that with a view to come of that too.

      My BMI is 18 which is good for me and I have 4-5 Ensure drinks a day (1500 calorie supplement daily). To maintain my weight.

      Sorry for having used medical jargon in the earlier post. Hope this one is easier to understand.

  • Actiquser
    Actiquser brightside2016

    Posted

    I was treated in Glasgow by a wonderful Consultant gastroenterologist who has dedicated her life to treating individuals who end up with short bowel syndrom due to trauma, ulcerative colitis, Crohn's Disease, pelvic radiation and those requiring intravenous feeding. Basically ending up with other people's problems and disasters

    There is now 1 gastroenterologist at the Royal Marsden treating short bowel syndrome due to radiotherapy damage and it is a growing service area due to increase in cancer survivors.

    Where are you based as this may well determine the service you receive?

  • Actiquser
    Actiquser brightside2016

    Posted

    Hi Brightside 2016,

    I also forgot to say you should be caffeine free with your diet as this speeds things up in the gut big time.

    I use to love coffee always fresh ground and with milk as a latte but no more.

    I love diet coke and have the caffeine free version it is not healthy but I love it.

    Hyperbaric Oxygen Therapy is a pressurised oxygen chamber that divers use for the "Bends" and the oxygen aids healing. Its expensive but worth it.

    Remember with the correct diet adjustments and medication life can improve immensly. The only thing I can't improve on is the lethargy.

    Gluten is absorbed in the small bowel and if you have a short bowel you will not absorb gluten and it will cause problems.

    Lactase the enzyme produced in the small bowel is required to breakdown lactose which is a component of milk. If you have a short bowel you are deficient in this enzyme and will not tolerate milk aor any mild products.

    Symptoms are wind, a noisy stomach, and diarrhoea.

    I take "creon" which is 3 enzymes to help with the digestion of fats, proteins and sugars and find this helps.

     

    • mark488
      mark488 Actiquser

      Posted

      Hi I have had crohns since 1987 and had 3 small bowel resetions over the years, but just in Dec of last year, I had my whole large bowel,colon,retum, all removed. And because of previous opps only have 150cm of small bowel left, with ileostomy. My surgery was at the QEU in Glasgow, My weight has dropped to 7 stones tonight, output has been going crazy, can't find anything that slows it down, not due to see  dietician till the 20 Jan, but can't go on like this 

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