Does anyone know about Short Bowel Syndrome

[imfree2fly66]

This is my first time posting, Good Evening. I have been diagnosed with Crohns since 1990, my first flare was in 1993 - Resection, and then another in 1995 - Resection, and so on..... then I ended up on TPN for 7 years and slowly was able to reintroduce food in the past 5 years, since being off TPN I have had 4 more resections which have resulted in a proctoclolectomy with an ileostomy. I have recently been told that I only have 103 cm of small intestines left, and as you already know my total large is gone. I also am not a good candidate for TPN at the present time due to my past TPN experience has left me with a damage liver function. I was informed that I am running out of options and was inquiring if anyone else is or has any experience with this situation. I understand that it states that you usually end up TPN dependent if you have less than 100 cm, does anyone know this for sure?? Any information would be greatly appreciated. Thank you

 

[ronroush7]

Welcome.

 

[ronroush7]

I hope you find some answers.

 

[justasgood]

Hi, I was diagnosed in 1993 aged 9 as colitis and have had a total colectomy and many resections in my 20s so that now I have 1.5meters of small intestine left. I have also spent three years on TPN during university. I have now been diagnosed with Crohn's. I have had 5 stomas and now have a permanent ileostomy. Maybe its because I have had this most of my life, (im 31 since yesterday) but I have found that my intestine has begin to compensate for the fact that I don't have a large intestine and very little small intestine. I don't know if you can define 100cm then TPN dependent but I do think that diet and absorption can be managed well with the right foods. There are lots of drinks with nutrients that are easy to digest. If I have a time where I was feeling miserable I always turned to a diet of yoghurt which allowed my intestine to rest and recoup. Its a day by day approach but for me also, getting off TPN and trying to stay off it is the objective. I have active Crohn's so hoping my remaining intestine will keep me going for another 60 years but TPN is probably in the future for me. Getting the right consultant who is motivated to fight for your quality of life is central to this success. Wishing you the very best. Stay in touch

 

[wild_one353]

not sure, but i hear psyllium husk may help your stools become more formed. be careful when trying it out though, start low dose for 1 week then try going higher. try 4-16 grams. the soluble fiber will feed good bacteria and encourage proper stool formation.