Guts

Seth Dombach looks fine, but he has suffered since birth with nearly constant pain from Short Bowel Syndrome.

“So do you, like, poop a lot?”

“Are you sure this isn’t just in your head?”

“Man, you are so skinny. You need to eat more!”

“I wish I was that skinny.”

“I had the stomach flu, so I know what you are going through.”

♦◊♦

I was born a month premature on November 4th of 1983. That’s when it all started. Due to unforeseen complications I was rushed to surgery due to a perforation in my small intestine. A section of it was removed, along with my appendix, followed by a colostomy and then the reversal. The ileum of my small intestine was completely removed. It’s at the end of the small intestine and absorbs nutrients including the essential B-12. To this day I am unable to properly retain most or any of the nutritional benefits of food. This explains my inability to gain or keep weight on.

As this happened when I was first born it was never anything I had to “get used to.” I was accustomed to pain, nausea, fun bathroom issues, etc. A few times I suffered from a dilated loop of the intestines which can sometimes reverse on its own and sometimes require surgery. Luckily for most of my childhood/teenage years I suffered pain and not the need for surgery. Through it all I had seen doctors multiple times, been diagnosed with IBS along with the previous ailments, however I was not put on any supplemental vitamins or medication other than taking a fiber drink every once and awhile, so during those stages in my life I never was fully processing the nutrients that a body needs.

Six years ago that changed. My symptoms got worse. The pain often left me in tears and curled up in a ball. I was sent to a hospital once even though I didn’t have insurance. The hospital took an X-Ray, pumped me full of morphine, and sent me on my way two days later with no real explanation of what happened or any prescription for the continual pain. What they did send me home with was a bill for $10,000. The most expensive hotel bill ever.

A few months passed and it wasn’t getting better. Fortunately by this time I was able to get insurance and get to a doctor for another round of upper GI X-rays and a colonoscopy. The colonoscopy did not reveal anything, but with the upper GI I was diagnosed with diverticulitis—pockets of growth that form in the intestine. They can cause pain, bacterial infections, and can lead to perforations in the bowel. When my wife and I saw the X-rays we were shocked to see that the one inside me had grown to about the size of a baseball. I was referred for surgery to have another intestinal resection.

The surgery went well. They removed the diverticulitis and did a resection. Within days I was up and eating again.

After being discharged from the hospital it wasn’t long until I knew something was wrong. I was unable to keep anything down. Then even when I wasn’t eating I would vomit something dark green color. Then I noticed that my stomach had started to extend to a much larger size than normal. Then came the pain, which I’d developed quite a tolerance to. Not this time. Did you ever hear that “the pain was brilliant”? It was. Brilliant to the point that the pain itself felt like a sentient figure, something that knew, something alive. I recall a moment of terror, laying on my couch with a cold wet washcloth over my forehead, feeling like my body was letting go and seeing nothing but an overpowering whiteness take me over. Doctors first said maybe it was the medication. It wasn’t.

Finally after a few days of this, I asked my wife to take me back to the hospital. I felt so depressed and guilty to have to leave her once again but I knew if I didn’t go in I was going to die. Which turned out to be much truer than I could have imagined.

As it turned out, for some reason my intestine had gotten another dilated loop in it and due to the time we had spent at home, another long section of my small intestine had stopped working and had literally died and started to rot inside me. The one point of luck was that it had not yet perforated. The solution was to remove the dead tissue, leaving me a shade above being permanently fixed with a colostomy bag.

The upside-down L-shaped scar from Seth’s intestinal resection surgery

I woke up in the hospital in the middle of the night, completely drenched in sweat. I walked into the bathroom, turned on the light, and noticed the growing spot of blood on my hospital gown. After running tests, they were able to determine that I had gotten an infection in the surgical site. They started pumping me full of antibiotics through my PIC line but a decision was made that more extensive measures were needed. The next afternoon a doctor came in to the room and explained that the best way to speed up the healing of this infection would be to open the wound and let it heal from the inside out. I figured this would be accomplished using a local anesthetic, which I was also wrong about. Now the incision from my new surgery ran from above my belly button down to my groin, and was affixed with staples. The vision of this procedure haunts: I held on to the railings and gritted my teeth as they removed the staples and pulled the wound open.

After that was done I was fixed with a wound vac and after a few more weeks I went home. I will never forget that feeling. The day was bright and warm, and the instant I got into the car I burst into tears. It was the most profound relief I had ever experienced. To feel I was going to live. I cried a lot in the following days, even to the point where a commercial for the live action version of “Charlotte’s Web” made me weep like a baby for some reason. I had learned from the nurses how to clean and pack the open wound in my stomach which was grotesque at the time. I am a person who likes to be in control of himself, and I do not like relying on others for things of this nature. During my stay in the hospital because I could not digest food, I was put on an IV for nutrients. I’m a skinny guy to begin with due to these things, weighing normally about 125-130 tops. Without eating for the weeks that I didn’t have food by mouth I had dropped around 20 pounds. I would go and look in the mirror sometimes and see my ribs and spine and the long road ahead. I had a wife I loved and wanted to be there for and here was another chance to be alive.

Today, six years later, there usually isn’t a day without pain. I dread going to sleep every night because I know the morning routine: pain, nausea, constipation or diarrhea. Some days the pain tapers off; some days it persists to the point where I can barely breathe or walk. I just ride it out like it is a long wave and I’m waiting for it to crash on the shore. Most days end with me passing out from exhaustion, hoping the next morning won’t be so bad.

I am fortunate enough to have a support system in my family who has helped me get through, but the mental side—depression, stress and guilt—that comes along with living with daily illness still gets to me. Depression from being under 30 yet living this way for life. Guilt on the days that I hold my family back. Stress knowing that another night of sleeps means another morning of pain. Sometimes I feel all of these emotions at once.

Looking good, Seth.

The worst part about having a severe issue like this is trying to convey it to others.

If I had a broken arm, people would understand because it is an affliction they can physically see. It is impossible to tell someone exactly how much pain you are in when it is going on inside of you. I think sometimes “if I could only make them understand then they would see.” Sometimes we look fine on the outside and this gets confused with being okay. Those of us who live with chronic pain like this are able to mask it out of necessity.

Over the years, I’ve gone to the doctors and they haven’t been able to determine what causes my pain to continue. Their solutions have been to get me hooked on painkillers, which I refuse to do. They never mentioned any supplements for what my body does not process. After doing independent research on this issue, I’ve been able to determine that I most likely suffer from Short Bowel Syndrome. Lately I have turned to vitamins and herbal supplements and though pain persists they’ve improved what normal is to me.

The last thing I want anyone to think is that I am looking for pity. I have a beautiful family, and even though some days are harder, I appreciate and am happy with all the gifts I have in my life. I always try to remind myself when I get really depressed that no matter how bad it gets, there is someone else out there who has it much worse. I simply want to bring attention to this issue as it is not talked about or understood. There is no special day for people with this; there are no ribbons or bracelets. But for those of us who live with it we need to discuss it. To let others know what we go through, to perhaps help them understand. And we need to have hope. Even in the darkest days. To never give up, no matter what, because even though it can be hard, life is truly beautiful, and this suffering cannot mask all the joy to be found in it. My family gives me hope. I wake each morning. I live on.

Read more in Cameron Conaway’s series, “What’s Your Fight?” on The Good Life.

Images courtesy of the author