Does anyone have short bowel syndrome?

I suffered from chronic lower abdominal pain from childhood, and by 11, I was in pain to varying degrees until I was 70. I saw many GI doctors over the years. At 16, I passed out on the toilet and woke up in the hospital, where I spent 3 weeks bleeding from what was my first diagnosis of chronic bleeding ulcers. By the time I was in college, I was bleeding a couple of times a month. All of this occurred before ulcers were known to be caused by the germ H. pylori. The pain was excruciating, but youth has a way of forging through. I saw a bright young psychiatrist at Stanford who convinced me that life was worth living and that I should use my mind to maintain a social equilibrium of engagement at all costs. By the time I turned 25 and was in grad school, I couldn’t handle the pain, the constant bleeding, and all the meds that came with my issue, such as lots of codeine and stomach-coding OTC drugs. Again fought through the pain. I started substitute teaching, which gave me a lot of control over my day-to-day and time. I joined Kaiser with the help of a school district, and soon saw a GI physician at Kaiser who offered a life-altering surgical solution called a Pyloric Vagotomy at the time, which I immediately agreed to. (similar to the Bariatric surgery today for obesity) .

I weighed 158 lbs at the time, and the surgeon deemed the surgery successful. I was ecstatic for the first time in 25 years! A month or so post-surgery, I began to experience difficulties. The pain was gone…Halluljah! But I was feeling weak and rapidly losing weight. By about the 3rd month, I was experiencing blackout spells and intermittent headaches, which grew into a permanent headache. My Kaiser surgeon and GP assured me I would get better. Frustrated, worried sick, scared, and down to 125lbs and feeling suicidal, I called the GP who saw me multiple times during my bleeding years in college. After he examined me, he became genuinely supportive and, after a few tries, got me into the GI and digestive care department at Stanford Hospital. Stanford was and remains a teaching and research hospital. At the time (1966), they had a program that allowed doctors from different disciplines to see and comment on undiagnosed cases. Mine turned out to be one such case. A doctor involved in pacrease research commented and reported, which I will report in my clumsy lay terms, that my problem stemmed from my pacreases' misreading sugar, fats, and proteins in the small intestine and not producing the enzymes and hormones needed to break them down. Plus the pancreas was producing erratic amounts of insulin needed to properly move sugar (glucose) into my cells. The doctor felt my glucose was swinging rapidly between hypo and hyperglycemia and contributing to my headache and fainting, and the enzymes needed to break down fats and proteins were not doing their job which was causing the weight loss.

The recommended solution was to eat 3 ounces of protein 11 times daily, avoid obvious sugars and to go into the lab once every week for test to determine the level of progress if aay at all.

@dee6cravens continued from above. After a few months, my health began to improve. I regained my weight and another 25 lbs, and the headache disappeared. Got smart and reduced my weight to 170 lbs. I was nearly pain-free for nearly 25 years. Then, about 10 years ago, chronic but tolerable pain returned in my lower stomach. The GI guys debated and settled on Diverticulitis. I made it through that with antibiotics, but soon the pain returned. Then I was diagnosed with IBS, but the pain continued. My hometown doctor recommended exploratory surgery and referred me to a surgeon at the Palo Alto Medical Foundation near Stanford. The surgeon reviewing my pictures believed a surgery was not necessary and referred me to a female GI specialist. She concluded that it was my gut biome and lack of water in my bowels. She explained the issue in lay terms and then put me on two Costco products: fiberoprics and a 40 billion probiotic regimen daily. Within 3 months, my pain was gone. And has never returned.

Lastly, about five years ago, I started to lose weight. At the time, I weighed 172 lbs; today, I weigh 149, and my weight loss is continuing. The GI doctors believe the pancreas is again
responsible for the enzyme insufficiency, which in turn is causing malabsorption. My doctor told me that the probable cause relates to my original Pylori Vagotomy surgery I had in 1965 at Kaiser.

The possible good news.
There is an enzyme replacement medication called Creon, but at nearly $2,000 a month, it will severely cut into our retirement savings! Severely!
The other solution is to undergo a reversal of the Pylori Vagotomy, which might restore the small pylori sphincter muscle, intestine, and pancreas to normal function. I don’t believe they can restore the severed Vagus nerve.

If anyone has had either the Pylori Vagotomy reversal or been on Creon I would appreciate hearing from you and your experience. Many thanks in advance.

@dee6cravens

What a life long experience. Wonderful about your accomplishments with your studys.
Congrats on all of that.

Appreciate all this info. Especially re ulcers found to be caused by the germ H. pylori." Never knew this.

Sorry you've experienced such excruciating pain for so long. Thanks again & all the best to you.

I was told to use a TENS unit "when I have abdominal pain " my abdominal pain is constant all the time pain,it doesn't come and go it's always there so when do I use the TENS unit? I did research and it says that TENS unit isn't very safe for people with short bowel syndrome. So I don't know what to do. Doctors like to treat my Short Bowel Syndrome condition like IBS. I don't have IBS. Treating Short Bowel Syndrome like IBS can make Short Bowel Syndrome worse.

@kkmom I'm sorry you've had to go through this and still have problems. My husband had to postpone any potential resolutions to the daily watery diarrhea due to a rare cancer that required surgery. It will be a while before he goes thru more tests, etc. All the best to you.(Sorry if this is a duplicate reply). db

Heart doctor wants to give me a calcium channel blocker medication for my heart palpitations, I don't have high blood pressure. Side effects from the heart medication can make my Short Bowel Syndrome symptoms worse. My GI doctor isn't treating my constant abdominal pain and constant nausea from Short Bowel Syndrome, so if I start the heart medication and my Short Bowel Syndrome symptoms get worse then what? The heart medication can cause more abdominal pain, can cause severe constipation and Bowel obstruction. GI doctor doesn't understand the serious side effects from the heart medication. I haven't started the heart medication until my doctors understand the side effects and have a plan in place. I am prone to side effects. My abdominal pain is constant at a pain level of 6 (with my high pain tolerance level). GI doctor doesn't know how to treat my abdominal pain at a level 6 so how can he treat it if it gets to an 8 or 10 because of the heart medication?

My doctors don't understand that because of short bowel syndrome pill formed medications don't absorb in my body like normal. That is probably why most of the medications they have prescribed me didn't help my symptoms. Pill formed medications don't absorb very much because I only have 2ft of my small intestines, so the medication moves fast into my intestines not fully absorbing. Some medications can stay in my body and absorb slowly over time and if I take a medication a few times a day it could all absorb at the same time causing more side effects.