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Short Bowel Syndrome: Does Anybody Have Experience With It?

As a brief overview of my case (this can be skipped if you want to get to the main question of the thread):

I've had severe Crohn's Disease since I was 12 years old, and in the time since I've had many, many surgical procedures that required removal of some portions of my small intestine as well as the complete removal of my Colon and Rectum. The Colon was removed due to advanced inflammation when I was still quite young (14-16), and the Rectum was removed sometime around 2016 due to extreme fistulas connecting my remaining large intestine to the, "Rectal Stump," (my rectum was separated from my small intestine after having the colon removed). Fistulas have been a recurring issue for me.

Now, I have three separate enterocutaneous (intestine-to-skin) fistulas in the anal region. They drain excessively and cause extreme pain. In hopes of getting them closed, I started Stelara and went on a TPN-only diet; nothing by mouth for 6 months. I did the 6 months of nothing-by-mouth and the drainage improved dramatically, but the fistulas show no sign of closing. My GI gave me permission to reintroduce food as I felt comfortable (I'm still on TPN for the majority of my nutrition), and I have slowly done so. However, with the reintroduction of food I have had a relapse of severe and painful fistula drainage; indicating the fistulas are no better than they were prior to the six-month bowel rest.

The main issue I'm facing (start here if you skipped the above overview):

My GI surgeons have informed me that surgical removal of the fistulas would require further small bowel resection. They have said that any further bowel resections would lead to Small Bowel Syndrome and that I would likely be TPN dependent for the rest of my life. I'm still quite young (mid-20s), so they obviously wish to avoid this as much as possible. I obviously would like to as well, but some times you have no choice: either have no quality-of-life due to never-closing fistulas or have lessened quality-of-life due to TPN dependence.

My GI still has a few things he would like to try, such as switching to Remicade which has more evidence as a remedy for fistulizing Crohn's Disease. I intend to go through with all his suggestions while there are still alternatives to surgery. However, I also need to prepare mentally for the possibility of surgery and thus Small Bowel Syndrome.

Does anybody here have Small Bowel Syndrome or know someone with it? How much has it affected your day-to-day life? If you're comfortable disclosing: what lead to you having Small Bowel Syndrome? What should I expect if I reach the point of no return and have to have the surgery?

Generally, what effect has Small Bowel Syndrome had on you, and how strongly would you advise against it if it is avoidable?

I appreciate everybody who took the time to read this. I pray that you all see good health and happy days ahead. It is comforting to know I am not alone in this struggle, and I truly wish you all the very best.

God Bless,
FriendlyOwl
 
Hi @FriendlyOwl, I don't know much about short bowel syndrome but just wanted to say hello. You are so young and I am so sorry you have been gven this lot in life. You sound pretty mature. This is a good forum and I hope you get some answers. I just wanted to give you my support and wish you good luck. There is a search engine on this forum so you could also try searching to see if there are any posts of the topic you are looking for.

Keep us posted. Hugs.
 
Hello
I haven’t got SBS myself and like jo mom sorry you are going through all this.
I have read that remicade is the best in terms of fistula healing. I have also read (but a while ago so sorry can’t link) that Dr Borody in Australia had some success by doubling remicade with anti-map antibiotics. I don’t know if it is worth discussing with your doc or even asking one of the Australian team to give a virtual second opinion? I’m just trying to think of possible ways to save your remaining intestine. Good luck.
 
Hi @FriendlyOwl, I don't know much about short bowel syndrome but just wanted to say hello. You are so young and I am so sorry you have been gven this lot in life. You sound pretty mature. This is a good forum and I hope you get some answers. I just wanted to give you my support and wish you good luck. There is a search engine on this forum so you could also try searching to see if there are any posts of the topic you are looking for.

Keep us posted. Hugs.
Thank you for the support. It is much appreciated. I wish you good luck and prosperity as well.

Hello
I haven’t got SBS myself and like jo mom sorry you are going through all this.
I have read that remicade is the best in terms of fistula healing. I have also read (but a while ago so sorry can’t link) that Dr Borody in Australia had some success by doubling remicade with anti-map antibiotics. I don’t know if it is worth discussing with your doc or even asking one of the Australian team to give a virtual second opinion? I’m just trying to think of possible ways to save your remaining intestine. Good luck.
I have also read research suggesting Remicade is the most efficacious drug for fistula healing. However, my GI has suggested that most medications haven't even been tested for efficacy in treating fistulas so it is unknown if other Crohn's medications may work as well or better than Remicade.

I will look into the Remicade with anti-map antibiotics and upon learning a bit more I will surely bring it up with my GI. He and I are working diligently to get this issue resolved non-surgically, so I'm sure he is open to any suggestions. Thank you for the advice!
 
Hi I have had SBS for a long time. It's something you have to get use to. I try to drink a ensure a day. I don't really care for them. But, with Chron's I can't eat some of the foods that have the nutrients that I need like potassium I don't get potassium. Your body won't get nutrients like it did before. I have to IV infuse potassium 4 times a week thru a port because I just get enough of it and have to get B12 shots . That's the main thing is getting your nutrients. And SBS is not a bad thing at all if it saves you pain and constant infection. Remember no 2 people are alike. You may be able to absorb more than I do as far a nutrients goes. Good luck in your journey.
 
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