My Continuing Story

You may already know my story, but for those who don’t, I’ll recap the basics and tell you the latest developments. 

I couldn’t keep food down, I had near-constant diarrhea and would simultaneously vomit bile because I had bowel obstruction after bowel obstruction where the intestine was burned and the tissue scarred and twisted.  They put me on hospice and said my condition was “incompatible with life.” 

I made my end-of-life plans, wrote my will and had it notarized and witnessed, double-checked my beneficiaries, planned my funeral and cremation (and paid for it), and even wrote my own obituary.  I posted my DNR order and registered it with the local hospitals.  I assigned a medical power of attorney and a financial power of attorney and chose my executor.  I put my affairs in order and even found a retired couple who agreed to adopt my elderly dog when I passed so I wouldn’t worry about what would happen to her once I was gone.  (They also cared for her every time I was in the hospital or when I was too weak from radiation and chemo.) 

Long story, short, after 12 weeks in and out of the hospital with basically nothing passing through my bowels, I was so weak, and I literally had only days left.  The surgeon the hospital had assigned to me said it was hopeless – that I was far too weak and too deconditioned to survive any attempt at surgery. 

He even stopped coming to see me.  I didn’t see him once during the last 8 days, no matter how many times I asked for him.  I knew the end was near.  I could barely lift my head off the pillow.  Physical therapy didn’t even bother to come anymore, because I was too weak and deconditioned to even stand on my own.  I had a PICC line put in, and since I hadn’t been able to keep any food down for months, they hooked me up to TPN, which is when they pump nutrients and electrolytes directly into your bloodstream. 

There was the added complication that a colostomy bag was out of the question.  You see, I have severe arthritis and enthesitis in my hands and wrists, and it wouldn’t be possible for me to open or empty a colostomy bag.  If I had one, it would have meant spending the rest of my life in a nursing home or care facility.  I was in my fifties, had been fiercely independent all my life, and honestly, I would rather die than spend the rest of my life with a colostomy bag I couldn’t care for and living in the never-world of a care facility decades before my time. 

Somehow, as weak as I was, I found the strength to realize I had no confidence in the doctor the hospital had assigned to me.  He had long since given up on me.  There was no compassion from him.  There was no hope.

I felt my body shutting down, but I just wasn’t willing to let go yet.  I was very confused by it all.  I didn’t know if I should pray to die or try to live.  One second, I’d hold on to life with everything inside me, and the next, I was ready to let go.   I was overwhelmed by it all.  As weak as I was, I still had just a sliver of “fight” left in me.   

It took every ounce of strength I had, but I picked up the hospital phone and told the operator I wanted a patient advocate, and I didn’t have time to wait.  I needed an advocate now. 

The patient advocate listened to my concerns and agreed that I had a right to feel that my needs were not being adequately addressed by my doctor.  She explained the process to fire that doctor from my case.  With what seemed like my last ounce of strength, I fired him.  I barely had the strength or state of mind to go through the process, but somehow, I did it.  For some reason I have never understood, God and the universe have always looked out for me. 

I asked for a surgeon I had seen earlier in my enteritis battle.  He came immediately to the hospital, and said he knew he couldn’t “fix me,” but he was willing to go in surgically, do an exploratory, and if he saw any way to improve things for me, he would do it.  He promised me that there would be no permanent colostomy.  He scheduled my exploratory for 8am the next morning.  He gave me hope.

He was very upfront that it was a high-risk surgery and that there was a good chance I might not survive it.  He said he’d do his best for me.  I prayed that night that he was successful, but that if the life I would have wasn’t worth living, that God would keep me from waking from the surgery.  I chose to trust, both the doctor and the universe.

I made a good choice.

I woke up from the surgery to find he had removed over 3 feet of my intestine, including my ileum (and terminal ileum,) my cecum, and about half of my ascending colon.  He explained that he didn’t try to repair my sigmoid colon because he doubted he could make it better, and he was concerned he might make it worse. 

I felt better when I awoke from surgery than I had felt in over eight months.  Even with the three new incisions, my pain was so greatly reduced.  I spent ten more days in the hospital and then went home, and spent the next six months recovering from the surgery, and learning to live with my “new normal.”  I understood my eating and bathroom habits would never be the same, but at least I could eat some things and I didn’t have a colostomy bag I couldn’t open or empty. 

What I did have was a constant battle with bile acid malabsorption.  In case you don’t know, when you no longer have a terminal ileum or a cecum, your intestines get overloaded with bile that can’t reabsorb into your body and return to your liver.  Your body, realizing you have too much bile, tries to push it out of your intestines by flooding them with water.  It causes you to anally expel huge quantities of watery diarrhea and the mucous lining of your colon, often up to 20 plus times per day. 

The loss of all this fluid also leaves you dehydrated no matter how much water you drink, causing frequent trips to the ER to have your labs and electrolytes determined, and have several bags of fluids administered.  It leaves you with fecal urgency and often, fecal incontinence.  The explosive watery stool you expel is so watery that it immediately soaks through pads and incontinence briefs, leaving a horrifying mess multiple times per day, and per night.  This constant flooding with watery stool also leads to frequent UTIs, no matter how often you shower and change your clothes. 

To help reduce this, you can take a bile acid sequestrant. It is a resin powder you mix with juice and drink, in my case, twice to three times per day.  This mix is thick, grainy, and gritty, and you have to use bleach on the drain in your kitchen sink weekly or the resin will coat and clog the pipes, and the sticky sweetness will attract drain flies and fruit flies.  

Without the ileum (a section of your small intestine) you can’t absorb certain vitamins, no matter how much of an oral supplement you take.  It just passes through you without being absorbed.  I’ve had constant B12 and D deficiencies, which left me weak, fatigued, and low on energy. Biweekly B12 injections and weekly vitamin D sublingual gels, along with large quantities of vitamin K, E, and O supplements, and a good multivitamin are helping to prevent ongoing malnutrition. 

Not only do I have a difficult time absorbing many vitamins, but my food choices are also extremely limited.   The list of foods I cannot eat is 14 pages long.  The list of things I can eat is a single page of bland, low-fat, low-fiber, and low-residual foods.  For many foods, the only way I can find out if I can tolerate them is by trial and error.  The error part can be very painful, to say the least. 

Things like dairy products (including sour cream, cream cheese, milk, ice cream, and yogurt,) whole grains, beans and legumes, seeds, nuts, greens, raw vegetables, baked goods (like cakes, croissants, and sweets,) cream soups, popcorn, rich sauces, tomato-based products, processed meats, fatty foods, fruits with skins or husks, anything with high fructose corn syrup, spicy foods, vegetable oil, butter, margarine, and cruciferous vegetables, are all on the “never eat” list.  My digestive system simply can’t process these things.  Even the few vegetables that are left have to be cooked until they are soft and mushy.  (This “diet” makes it hard to avoid malnutrition.) 

After months of living basically on Rice Krispies, scrambled eggs, plain untoasted English muffins, poached skinless chicken breast, and unsweetened applesauce, my condition ebbed and flowed, but left me basically medically homebound.  After about eight months, it seemed to get much worse, but I had no idea why.

I had recurring Enterococcus faecalis (E. faecalis) and Escherichia coli (E. coli) UTIs and infections.  Just to add to the “fun,” I got a call from the lab that I had a very serious colon infection called C. Diff that is contagious through contact and can be deadly.  They immediately started me on a course of very specific antibiotics.  This infection can be easily spread, so I had to be very careful and avoid physical contact with others.  I had my home thoroughly cleaned with bleach to help as well and had to clean my bathrooms at home with a special bleach cleaner at least twice a day.

This infection, the partially clogged bile duct, and abdominal inflammation, all added to my worsening diarrhea and fecal incontinence no matter what meds I took or how careful I was with my diet.  Nothing seemed to help.  After a while, I just learned to live with it.  I stayed at home, and my world became very small.

Then I started having unexplained pain in my abdomen and lower back that would leap from just barely bothering me to 10 out of 10 on the pain scale.  I’d have seriously low blood pressure and almost pass out, and then as the pain spiked, my blood pressure spiked to over 180/100, which required me to take Clonidine to level it off. 

Eventually, CT scans and ultrasounds named the culprit.  It was a medical term I had never heard – “gallbladder sludge.”  It was most likely also caused by my cancer radiation treatments, and this sludge was causing my bile duct to be partially blocked, and my gallbladder itself to be distended and spasming. 

Believe it or not, the ER sent me home with an anti-spasmodic medicine and didn’t even recommend follow-up of any kind.  I casually mentioned this to my rheumatologist at my next appointment, and she was shocked they hadn’t sent me to a specialist. 

She gave me a very good piece of advice.  She told me, “If your abdominal pain goes up and you spike a fever, call an ambulance and get straight to the hospital.  Don’t hesitate.  Have them remove your gallbladder.  It’s going to have to go, so do it sooner rather than later.” 

A week later, that is exactly what happened. Abdominal pain, lower back pain, pain by my right shoulder blade (all classic signs of gallbladder pain) and a 102.5 fever.  I called.  I went.  She was so right!

This was the same hospital where my life-saving surgery had taken place ten months earlier.  When I got to the ER, I asked the head ER nurse if the doctor who did my previous surgery was on-call.  They told me he was off that weekend (it was a Friday morning.)  They told me the name of the surgeon on-call, and at least it wasn’t the doctor I had fired before.  I wasn’t happy about it, but I resolved to let a doctor I didn’t know remove my gallbladder.

In one of life’s unusual twists, the head ER nurse popped his head into my room a few minutes later.  He said, “I texted the surgeon you wanted, and he said that for you, he would come in on his weekend off.”  And that is exactly what happened.  He came in later that morning and removed my gallbladder the next morning.  The relief I felt when I found out he was going to be my surgeon again is beyond words. 

After the surgery, he told me it was a good thing I had my gallbladder removed, that it really needed to come out.  It was inflamed, distended, and infected.  I stayed a total of four days in the hospital.  I came home and spent about two weeks taking it easy and recovering from the surgery. 

The strangest thing happened during my recovery.  The horrendous bile acid diarrhea slowed down, and then almost stopped.  Days have gone by, and now that I no longer have a gallbladder to flood my intestines with bile, I started to have fewer bowel issues.  (After your gallbladder is removed, the bile just sort of drips a little at a time in smaller amounts throughout the day.)  

I’ve finished my course of antibiotics, so my C. Diff infection has resolved.  I’m not having such horrendous bile acid malabsorption.  I’m staying hydrated.   I’m almost afraid to mention how much better I feel because I’m afraid I will jinx things, and it will go back to the way it was. 

Sometimes, you don’t even realize how sick you are until you are halfway recovered.  It feels like this is what has happened to me.  Without the constant bile acid malabsorption, I’m not constantly fighting dehydration, my skin has stopped looking like crepe paper, and I’ve stopped losing layers of skin at the tiniest bump or scrap to my arms. 

I’m only two weeks out of my gallbladder surgery, so who knows how this story will end?  I’m glad to say I will be here to find out.