14 years of random adhesive small bowel obstructions, #9ish

Posted by libranindecision @libranindecision, Jan 11 8:05am

I apologize is if this is too long but it does seem from other posts that going into detail seems to help because of all the surgeries.

This is really taking a mental toll on me and my spouse. How do couples deal with chronic conditions like this? It gets hard to live without fretting every GI symptom is a new ASBO versus middle aged indigestion.

I've been dealing with these ASBOs (I know what it means in Britain and cracks me up) for nearly 14-15 years now. I've been hospitalized maybe 9 times, possibly more but it's hard to recall.
The reason I have them is because I was born 3 months premature in the early 1980s and had to have some sort of intestinal surgeries involving a temporary ileostomy. After three months the stoma failed somehow and my small intestine went out the stoma and into the world. So there was a lot of handling which led to adhesions forming. I have a very large transverse scar across my abdomen below the stomach as a result with a scar over the former ostomy (had to have a hernia repair in 1995 because they didn't put mesh in 81.)

After the first three attacks in the late 2000s, the surgeon resected six inches of small intestine, removed scar tissues, and applied biofilm. I had a few minor attacks over the years but in the last 12 months I have been hospitalized four times, April, late September, early October which resulted in an open laparotomy and an incision from stomach to bladder, and I just got out of the hospital late Wednesday night without surgery. In all these cases I have to have the (unprintable) nasogastric tube placed, and I have medical flashbacks now.

Idiot me badly strained the incision in late November so I have some fun painful lumpy spots down the incision and a suture came out through a small not-quite healing scab on the new scar itself. The bloating and distention has caused a couple more of them but as long as they don't abscess or get infected I'm not going to worry.

This is no way to live. I'm trying some dietary changes like Metamucil and avoiding spicy foods that make me cramp, and eating and drinking slower and smaller amounts throughout the day. Thankfully my labs are good so I don't need to manage cholesterol, sugar, or sodium intakes in any special way.

So I guess what I really need is advice on mentally managing all of this not just for me but also for my wife.

I deeply appreciate anyone who got through this novelette.
Libran Indecision

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I am so sorry you are having to go through all of this. I am new to ASBO and am struggling with the fears and anxieties. Keeping track of everything I eat, every bowel movement or gas I pass. I get scared when I do not have bowel movements or gas and thank God Everytime I do. I am currently scheduled to go see a GI doctor at the mayo clinic and then I can start seeing a dietician. I work in behavioral health and have found that the support here in these groups is the best help I can get through this. It eases my mind to know I am not alone and to learn about others experiences and how they are coping. In my opinion. It is about learning how to live with it, looking at menus before we go eat, turning down invites to places we know we can not eat at and just monitoring everything, keeping a daily journal and of course reach out for help and support.

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