I go out of my way to avoid talking about anything to do with the intestines, their activities and bizarre noises. I might be the only person on the planet who doesn’t laugh when people make gas jokes. I am more willing to drop an “F” bomb like it’s nothing than say the “F” word for gas, but if you have been reading my blog, you already know I have issues. Just just add that one to the list or cross it off or send a memo to my psychiatrist, because I’m going to do something that I have been avoiding for years. I’m going to talk about my experience with scleroderma and my GI tract. (It’s okay Mom, just get over to the fainting couch.) Why so honest about by own experience? Because of one simple statement by Dr. Furst, “Problems in the GI system with Scleroderma are not hopeless.”
Dr Furst has been my rheumatologist since 2005 and he is a smart, positive and inspiring person. I was not surprised his tele-seminar about scleroderma and GI involvement was easy to understand and packed with useful information. What really struck home with me was his statement about not being hopeless. I know that statement to be a fact because there was a time when I had to jump start my GI tract movement with daily medication.
One day in 2005-ish, I was given a chicken sandwich with radioactive mayonnaise. (It was delicious. UCLA Westwood/ Ronald Reagan, is in the top three of my hospital good food list.) As my food worked it’s was through my digestive system, I would periodically go stand in front of some small nuclear device for an inner abdominal Kodak moment. This was not my first trip to the gastero-entro-nuclear rodeo. I took a similar test a few years before at the Veteran’s Hospital in San Diego. For that test, I got to lay down and take an excellent nap after my radioactive spiked sandwich. I suppose the test has evolved because this place was wise enough to keep me upright because of a hiatal hernia. It keeps my stomach open. Yep, I’m a little teapot. Tilt me over and stomach acid comes out. (Second verse, same as the first!)
The test results had shown my scleroderma was progressing nicely. And by progressing nicely, I mean progressively hardening the muscle tissue in my digestive tract. As Dr. First mentioned in his tele seminar, scleroderma starts at the beginning of the digestive tract; the mouth and throat, and then moves it’s way on down. That is how scleroderma changed my GI system. Now, in addition to the esophageal dismotility, I have delayed gastric emptying, slow motility of my intestines and most likely an absorption problem thanks to Scleroderma. My body’s waste was not exiting in a timely manner. In fact, it was barely leaving “the building.” at all.
Reglan is usually the treatment of choice for this condition, but because I have major depression and anxiety disorder, reglan makes me climb the walls. Dr. Getzig, a Gastroenterologist referred to me by Dr. Furst, also told me she felt my condition was serious enough to prescribe a stronger medication that required daily injections. At the time, I thought it might be overkill. I believed my plumbing was working just fine. Sure, I had to make frequent trips to the bathroom throughout the day in order to have something that resembled a bowel movement, but that’s normal, right? (Denial? No, not me…) I don’t know if anyone else experiences this, but when I adapt to the changes in my body, I start to believe they are normal. That is, until I have a “normal” experience.
Of course, there was the usual fight with the insurance company because of formulary restrictions. At the the time I had private insurance. I was not using the Veteran’s Hospital as my primary care facility at the time. After an annoying fight with my insurance company and notes to the insurance company from both my rheumatologist and gastroenterologist, the medication was delivered to me from their closet location: Florida. Did I mention I live in California? You know: Because the medication was less expensive from that pharmacy and the cost of shipping something refrigerated across a continent made it a real money saver. Did I mention it was available for pick up from the UCLA pharmacy if I wanted to pay cash? I guess my insurance company knew a guy, who knew a guy, in Florida.
I feel silly describing this, but after the first few days on this medication, I lost a few pounds. Things had been moving so slow before the medication, my intestinal movement was nearly stopped, and I had not even realized it. The symptoms had become “normal” to me. And after a short time on the medication, I felt better overall. I started to feel less pain and more energy. I did loose weight rather quickly and confirmed what my GI doctor suspected, I had absorption problems. She recommended I use a supplement like Ensure. Ensure helped but eventually I found Isegenix. It has digestive enzymes and I can really tell a difference if I use something without them.
After that, things got even better. I was getting fewer impact and pressure sores on my fingers. When I would bump into things with my hands, my skin would not rip open like tissue paper. The medication did more for me than get my digestive system going. Not only was I was getting the nutrition I needed and my body was eliminating waste properly, I was ready to exercise. I had told my nurse practitioner about my increase in energy and that I wanted to start exercising again. I was never very athletic until I joined the Navy and was in great shape when I got out of the service, but after years of depression and constant pain, I stopped going to the gym and became very sedentary. Vacuuming had become my work out and I had to rest after that. But because I was feeling better, I wanted to try to exercise again. She gave me the number to her Kundalini Yoga instructor and it changed my life.
I called the instructor before going to her class and we disused my limitations. She worked with me in the class and helped me make accommodations. Eventually, I started keeping up with the class. And then, I noticed another positive change.
A common result of scleroderma is the loss of the fat pads on the bottom of the feet. Imagine walking on a pile of pointy rocks barefoot. That was what it was like for me to walk barefoot in my own house. I even had to wear flip flops in the shower and swim in waterproof sandals. Then, one day at yoga class, I walked onto the hard floor from the carpet without noticing. My instructor brought it to my attention. It was a strange feeling. Not just because I no longer felt the bones of my feet being pushed into the hard floor under the weight of my own body, I felt like I was making progress. I had a new hope that some of the deformities scleroderma gave me, would somehow get better. Getting my GI system working properly came with a gift with purchase. Instead of lip gloss and perfume, it was fewer sores that healed faster, and the gift of sitting on the the beach and being able to wiggle my toes in the sand, something I thought I would never be able to do without pain.
Then, something amazing happened. I got up one morning and had a bowel movement BEFORE my injection. I was going on my own. I called my doctor and he told me to watch it closely, but if I was able to have a bowel movement on my own, I could stop the injections. And that was it.
When I began taking medication for my motility, I was certain it would be for the rest of my life. Sure, I do have to maintain a healthy diet, but does’t everyone? What I thought was a little much turned out to be the drastic measure I needed to help my whole body, not just my GI System. Years later, Scleroderma continues to progress throughout my body, but because of the right medications for me, it is doing it at a very slow pace. It is up to me to do what I can to keep myself healthy with healthy food and exercise. Yes, I do eat junk food every now and then, but it’s not slipping up. I eat what I want in moderation and do it wisely. I will do everything I can to keep my GI system moving, but if it stops again I do know it is not hopeless- bit that’s no free pass to eat processed food and blocks of cheese.
Scleroderma is overwhelming. The symptoms are different for everyone but there are so many treatments available and so many treatments on the way, I remain hopeful for a cure in m lifetime.
For more information and some great resources, please visit: The Scleroderma Research Foundation The Scleroderma Foundation Bounce to a Cure Scleroderma Blog