A couple of people have asked me what Short Bowel Syndrome is. Some people (babies) are born without enough small intestine. I don’t have that type of Short Bowel Syndrome, and I don’t know enough about it to even try to explain Congenital Short Bowel Syndrome. In my case, I had to have most of my small intestine surgically removed due to something called “radiation enteritis.”
According to Focus Medica, “Radiation enteritis results from radiation treatments to organs in the abdomen and pelvic areas such as stomach, reproductive organs or rectum. These treatments maybe given for prostate cancer, vaginal cancer, cervical cancer, rectal cancer, anal cancer, lymphoma and other malignancies.
The symptoms include:
Nausea
Vomiting
Rectal pain
Stomach cramping
Watery diarrhea
Rectal bleeding
Mucous discharge from the rectum
Weight loss
Stomach pain which occurs in waves“
According to the Cleveland Clinic, “Radiation enteritis happens when radiation damages sensitive tissue in your intestines. It may occur during treatment or months after you’re finished. Some people experience mild symptoms, while others have long-lasting discomfort and complications.
Other terms that describe this condition include:
Pelvic radiation disease.
Radiation colitis.
Radiation enteropathy.
Radiation-induced bowel disease.
Radiation mucositis.
Acute radiation enteritis typically only lasts a few weeks to months. Chronic radiation enteritis can last for months, years, or for the rest of your life.
Symptoms may include:
Abdominal pain and cramping.
Bloated stomach.
Diarrhea.
Loss of appetite.
Nausea and vomiting.
Pain when you poop.
Rectal bleeding or pain.
Unintended weight loss.
Urgent need to poop.”
The Cleveland Clinic goes on to say that “Ongoing irritation and inflammation in your intestines can lead to:
Dehydration.
Electrolyte imbalances.
Fistula, an abnormal connection between your intestines and a nearby organ.
Intestinal perforation, tears in the lining of your intestines.
Malabsorption, an inability to absorb nutrients from food.
Small bowel obstruction.
Stricture, narrowing of your intestines.
Ulcers, including peptic ulcer disease.”
According to medlineplus.gov, radiation enteritis can also cause adhesions.
Medlineplus.gov goes on to say, “Adhesions are bands of scar-like tissue. Normally, internal tissues and organs have slippery surfaces so they can shift easily as the body moves. Adhesions cause tissues and organs to stick together. They might connect the loops of the intestines to each other, to nearby organs, or to the wall of the abdomen. They can pull sections of the intestines out of place. This may block food from passing through the intestine.
Some adhesions don’t cause any problems. But when they partly or completely block the intestines, they cause symptoms such as:
Severe abdominal pain or cramping
Vomiting
Bloating
An inability to pass gas
Constipation
A symptom the Cleveland Clinic adds is Obstipation (being unable to pass gas or poop).”
Radiation enteritis usually goes away in a few months after radiation treatment, but if it is severe, the effects may be long-term, or even life-long. If it causes bowel obstructions, especially repeated bowel obstructions and hernias, then surgical intervention is required.
When they did pelvic radiation and internal radiation during my first battle with cancer, the radiation burned, inflamed, and destroyed most of my small intestine. I had multiple adhesions, bowel obstructions, and two hernias in the course of just a few months. It also damaged 4 places on the inside surface of my large intestine and left 7 strictures.
Because of the inflammation, burns, adhesions and strictures, there was no opening left. Imagine a water drainpipe, with all kinds of hard gunk stuck on the inside surface. It wouldn’t let the water drain properly, and if there was too much of it, the drain wouldn’t drain at all. So, in my case, everything I ate got stuck in the first tiny part of the intestine, and in the lower part of my stomach. It is incredibly painful and requires at least a 10-day hospitalization with an NG tube from your nose to your stomach to slowly and methodically breakdown everything that is stuck into tiny pieces about the size of a pinhead, flood it with a sterile liquid, and then suction everything back out (through your nose.) Gross, eh? Painful? You bet.
If this isn’t done, your intestines or bowels could rip or tear, leading to a life-threatening condition. Having your abdominal cavity suddenly filled with human waste products from a tear in your intestine is a critical situation that is typically fatal. During this 10+ day hospital stay, you aren’t allowed to eat or drink anything! (You are given fluids through an IV.)
A person of my height and weight should have between 610-710 cms of small intestine. (That’s 20-24 feet for us Americans, who have no concept of the metric system.) A person typically can’t survive with less than 200cm (6 1/2 feet) of small intestine without some type of medical intervention. They left more than 6 feet for me, and while it wouldn’t let me eat normally or have normal bathroom habits, I could at least eat, and by taking special vitamins (via injections) I could manage. I did have issues with malnutrition, severe abdominal bloating and pain, and obstipation.
Then the second cancer came along. Radiation for that was in my neck, mouth, and the back of my head, so it didn’t touch the area around the pelvic region. However, there were huge parts of my small intestine that still had radiation enteritis and strictures, but they just didn’t remove because I couldn’t survive well without those sections of my bowel. The chemo destroyed most of the rest of my small intestine, leaving me with less than 200cm of functioning small intestine. The small intestine is where you absorb nutrients, vitamins, minerals, and where bile breaks down wastes. I can’t do any of those things anymore.
Without spending 12 hours a day on a TPN pump, I would suffer from malnutrition and slowly starve to death, no matter how much I ate. So, in that way, TPN is a lifesaving item. Thank God, it exists, because I couldn’t have survived without it.
The pictures below, the first one — the white part on top is the stomach connected to a normal small intestine (which is also white.) The second picture is what my small intestine now looks like. The white stomach joins the now severely reduced small intestine. The beige-colored part in both pictures is the large intestine (the large bowel.) Mine is also not like this, because it is damaged by radiation in four places, as well and has seven strictures.
My large bowel (also called the large intestine) also looks different because I have several strictures. An intestinal stricture is a narrowing in the intestine that makes it difficult for food to pass through. Sometimes, it can lead to intestinal blockage. More often, it causes daily bloating, cramping, severe abdominal pain, and nausea.
Here is a (very blurry) picture of the strictures in my large intestine.
There are 7 strictures in my large intestine which make it difficult to get food to pass through. This, along with my damaged small intestine, means I need to stick to very low-fat foods, no fresh fruits, no dried fruits, no cruciferous vegetables (like broccoli, cauliflower, brussel sprouts, cabbage, etc.,), no seeds, no beans, no legumes, no popcorn, no hard crunchy foods, no nuts, and what veggies I can eat have to be cooked until they are “soft and mushy.”
It is also essential that I eat in small amounts 5 to 6 times per day, rather than regular meals. Currently, I am only able to ingest about 700 calories in a day. Some days, I’m lucky if I manage to eat 300 calories. Fortunately, I have a PICC Line and a TPN pump, that pumps nutrition directly into my bloodstream, near my heart.
It provides about 2,000 calories per day, along with so many vitamins, minerals, and enzymes that my GI system simply can’t absorb at all. This helps prevent malnutrition, rickets, pernicious anemia, and many other life-shortening conditions.
If you’d like to see how I hook-up to TPN each night, you can watch this video of how to use TPN via a PICC Line. Total Parenteral Nutrition Patient Instructional Video (landmarkhc.com)
Chronic (or life-long) radiation enteritis doesn’t normally happen, but they think it happened to me because of my abnormal shape of my pelvis, as well as the metal implants I have. My pelvis (what is left of it) is much further down, and at a strange angle. Radiation machines are made for a standard skeletal shape, with some adjustment available, but not for the front-to-back slant of my pelvis. I had even asked my radiation oncologist about this before pelvic radiation. She called the tech support for the manufacturer of the radiation machine, and they told her they didn’t anticipate it would cause any problems. I was assured it was fine.
However, the outcome has been that I now have Short Bowel Syndrome. While I am hopeful that someday I may be able to get off of TPN, my doctors tell me it is not likely. Being on TPN is very costly. My TPN bag costs $1,124 per day. (That is $7,868 per week, or $409,136 per year.) And that price is just for the actual TPN product. There are also costs for the supplies (alcohol wipes, gloves, hand sanitizer, flushes, tubing, caps, arm covers, dressing materials, injection needs, and so on.) Then I have to add the cost of a nurse coming once a week to change the dressing. (The nurses who do this have to be RNs.) On the same day, the nurse also draws 3 blood samples and drops them off at the local lab. There is also the cost of the doctor (in my case, my PCP) who must look at the lab results weekly, put in weekly orders for dressing changes and labs, and meets with me (via telehealth) to discuss any issues that are occurring, and to prescribe any drugs that will be needed to offset any issues. I say all of this to make the point that TPN is not cheap!
The hardest part of living while on a TPN pump is that you really can’t travel. Yes, I can put the pump and TPN in a special backpack if I need to run to the drugstore but if I wanted to go on a vacation, I couldn’t do that. TPN has be refrigerated at all times. A week’s worth is delivered on Friday by refrigerated delivery. I must be home on Mondays for labs and dressing changes. I must be home on Fridays to receive the actual TPN for the following week. TPN only stays usable for about 8 days, so you can’t just get some early. Trying to get a cooler of TPN as a carry-on on a plane is a nightmare (from what I’ve been told, and they can insist on taking a sample of the liquid, which makes the rest of the bag unusable.) If you check the cooler on as checked luggage, and somehow it gets lost on the way, that would be very serious. (It can take 24-48 hours for a specialized pharmacist to make TPN and deliver it, and there is often no process for replacing lost bags.)
TPN bags (especially when full or during the first 6-8 hours) are incredibly heavy, and hard to carry on one arm. (You can’t carry it with the arm that has the PICC Line in it, because it exceeds the weight restrictions.) That means, I would have to carry the TPN backpack on my left shoulder, and I limp on my left side. When you add that much weight to my weak side, it makes walking a bit concerning.
There is also some information that has to be faced by people who will need TPN for the rest of their lives. According to AmeriPharma Specialty Care, “Roughly half of all patients receiving TPN will require either long-term or permanent TPN treatment. The vast majority of patients on permanent TPN receive therapy in the comfort of their own homes. In the United States, there are approximately 40,000 people who receive TPN therapy at home. TPN solutions have essential nutrients, and they typically include fluids, proteins, sugars, vitamins, and other electrolytes.
Although TPN may offer many people who do not have fully functional intestines the opportunity to live long and productive lives, patients who are receiving TPN are always at an increased risk for complications related to the procedure.
Possible complications include:
TPN-induced liver damage or, in worse cases, liver failure (TPN-induced liver failure is more common in children than it is in adults)
Weak or brittle bones
Inflammation of the gallbladder
Frequent infections in the central-vein access lines
Blood clotting in central access veins
Refeeding syndrome (a serious condition that might happen if your body doesn’t process the TPN nutrients as expected, leading to electrolytes/fluids imbalance which could be potentially fatal in some cases)
Patients who are receiving TPN and suddenly develop a fever or notice any change in the skin in the area around their central line should immediately contact their healthcare provider and go to the emergency room as this most likely indicates that they have an infection.
Because TPN severely limits daily activities, some people who receive it on a long-term basis may experience difficulties in their social lives.
When determining the outcome for patients being treated with TPN, the underlying cause of the intestinal failure needs to be considered, and this would affect the long-term survival prospect for those patients. TPN-dependent patients have a 3-year survival chance of about 65 to 80%.
So, life with a TPN pump can be very restrictive, although I do have to add thank goodness for TPN. I wouldn’t be here without it.
