Short bowel syndrome advice :)

[Katjev]

Hi I'm new to this forum, it will be nice to be able to talk to people who are in a similar situation as me, I don't really talk to friends about my condition I don't really see the point.

Here's my story. I'm a twin ) and we were both born 7 wks premature 30 years ago. I started with an infection in my bowel which perforated and had surgery to remove a large amount of small bowel which resulted in a colostomy illostomy. My twin started to develop the exact same syptoms as me but they rushed her in much earlier and was able to save alot more of her small bowel, she also ended up with a bag. Both were reversed successfully which I feel very lucky about.
When I was 20 (10 years ago now) I developed a large ovarian cyst which grew to 28cm in length! I had this removed along with my ovary, flupoian tube and also 1 1/2 of small bowel. I recovered very well and again I felt very lucky my bowel adapted quickly and I soon returned to my normal weight.

A few years later I was disgnosed with ulcerative coiltis (left side) my sypmtoms were minimal, I fled a few times a year! Things have changed since this, I now bleed once a month on average accompanied with craps. Again I can manage with this and I've been told its not progressed in any way, which is good but I don't understand how I can bleed and cramp more if the colitis is the same as it was from the start. Despite all if this my health is very good. Im anemic on and off all the time and take all sorts of meds (vitamins, asacol etc..) and I have around 6 loose stools a day, which is normal for me. The only thing I find difficult to live with is the wind I have pass when I'm having a bowel movement! It as a big impact on my social/personal life. Can anyone recommend anything meds/diet?? I forgot to mention I can 1.3 metres of small bowel left. Thank you for your time and reading my very long story ))

 

[Angrybird]

Hello and welcome to the forum

Just to confirm what meds are you on for the UC? What vitamins are you taking? What tests have been done to confirm that things are fully settled inside? What explanation are the docs giving for the continued bleeding? What type of diet - if any - are you following at the moment? You mention short bowel syndrome and I have seen mention of psyllium husks sometimes helping with this - have you heard of these at all?

Will leave the questions at that for now hun!

AB
xx

 

[David]

Hi Katjev and welcome

I'm curious about the same questions as Angrybird asked.

With that little of bowel left, have they put forth the idea of either enteral nutrition or TPN? Not only would they provide you the nutrients you need, but could help get your Ulcerative Colitis in remission.

All my best to you.

 

[Katjev]

Hi David and angry birds, thanks for taking the time to help
for my UC I'm taking asacol (1 tablet three times a day) I'm also on cyanocobalamin three times a day, ferrous fumarate 210 mg to take for 6-12 months, folic acid tablets once a day and forceval once a day Which is a multi vit. My continued bleeding I presumed wouldn't stop because of my UC. The asacol is supposed to help me with that. I'm not following any diet, I just avoid food that I know cause me to bleed such as fruit and fibre breakfast cereal. I eat good home cooked food etc.. I don't live on rubbish. I had my last colonoscopy over a year a go and I was told nothing had changed regarding my UC. To be completely honest my consultant as very little for me, I see him once a year for 10 minutes and he tries his best to rush me out the door! I'm thinking of changing consultants depending on how my next appointment goes. Regarding general nutrition or TNP I thought it was for people who were quite sick and unable to keep weight on. I am healthy and my weight is more than stable, I even have to watch what eat if I want to loose a few pounds. I'm 5ft and weigh 8 1/2 stone. I will certainly ask about pysllium husks thank you for that!

 

[David]

If you feel rushed by your consultant and unhappy with their care, then definitely get a new one.

Enteral nutrition isn't just for super sick people, it's a great treatment option actually.

Out of curiosity, do you ever see the Asacol pills come through all the way whole?

 

[Angrybird]

I think you need to be seen by someone who is willing to take the proper time with you and perhaps check up on things. To me if the meds were working you shouldn't be having any bleeding at all.

 

[Katjev]

thanks for your feedback I think I will change consultants I'm not getting the correct care. I didn't realise it was a treatment option thanks for that advice. How often would I need it or does that depend on blood test? And yes I do pass the asacol whole but this doesn't happen too often. My flare ups are not that bad. I get cramps and pass blood for two or three bowel movements, so the blood can pass within the day, although the cramps can sometimes continue for a two or three day. They do pass once I've had a B/m and its not really loose or urgent but the pain stops completely. My UC is very mild compared to what I've read on here.

 

[David]

Be sure to tell the new consultant that you pass the Asacol whole. With short bowel syndrome, intestinal pH has to be closely regulated and it sounds like your consultant certainly wasn't doing that. Give this a read. It's heavy reading but it would be well worth your time reading it multiple times to understand what they're saying. I'm happy to help when I can, as well.

Enteral nutrition can be given as "total enteral nutrition" where that's all you get or supplemental enteral nutrition where you get that and normal food. There are a variety of factors that come into play to determine what is best for you. If your new consultant thinks that enteral nutrition or TPN would be good for you, they'll work with you to figure out what would be best for your particular circumstance.

 

[Katjev]

Thanks David I will certainly give that a read, I'm not seeing my consultant until April 2013 so I will see how he is with me then. Do you mind me asking you one more question? The cramps I'm getting with no blood or urgency are related to my UC? I do have a bowel movement and the craps do pass straight away. Thanks again

 

[David]

My guess is it's somehow related to the UC but I have no idea in what manner, sorry.

 

[Katjev]

Thank you