On April 1st I had another procedure to assist in finding out why the symptoms in my belly have worsened over the last year. It wasn’t a routine procedure. Prior to 2013, I was having upper stomach pain that came and went. Held at a 3/4 on average and would rise to a painful 8/9 until I ended up in the Emergency Department at a hard 10 and was admitted for emergency surgery to remove my grossly diseased Gall Bladder. So that I don’t go back into all that, those posts can be found here and ending here for the most part. My stomach never did get better. I was diagnosed with Gastritis during the ERCP in 2013 after my first Gall Bladder surgery, so I knew I had the issue of inflammation around the stomach lining. Reducing fat intake didn’t seem to make a difference, but I’ve kept to low to no fat on a regular basis. My kidney’s are no longer in the greatest shape, but they are functioning. The issues that took me back to the same Gastroenterologist was bleeding, pain, and months of diarrhea, after years of constipation. My tailbone has been clicking in and out-of-place for over a year more and more frequently. Worse when getting up from a sitting position or when on the toilet. I thought it might be due to the Osteoarthritis of the Lumbar Spine diagnosis I’ve had.
I knew I could also feel something inside me when going to the bathroom. As it turns out there was and it was removed during the Colonoscopy. I was diagnosed with Diverticulosis in the recto-sigmoid colon and in the sigmoid colon with colonic spasm. The 3 mm polyp in the sigmoid colon was resected and retrieved. Internal hemorrhoids were found as well, I think many of us have those, either internal or external. Either from constipation, strain or from having babies. I haven’t received the biopsy results yet. I am not worried about that, I’m just glad to have the annoyance out of me. Severe diarrhea has complicated things to the point my legs have a hard time carrying me to the bathroom several times a day and during the night. It’s unfortunate that sometimes there hasn’t been time to get there and I’m closest to the bathroom I can be. That symptom still nags me. I’ve been relying on my Spinal Cord Stimulator even more using it to mask the discomfort around my mid section as well as my legs. Newer reports suggest fiber isn’t as beneficial as previously thought but that mesalamine might be. This September 2014 Mesalamine for Recurrent Diverticulitis Prevention: Results from Phase 3 Controlled Trials report doesn’t seem promising. Everything else is invasive at the critical point. I gained a horrible amount of weight the last 2 years with little to no change in activity or eating habits. Swelling in my face is often, gray color to my facial appearance, a look of black eyes. My stomach extends to the point of looking like there’s a hill-top on one side or so swollen I’m harvesting a human in there. It makes sense now why the area where my Gall Bladder use to be has never stopped hurting. I’ve learned to deal with it and gastritis, the only time it knocks me down some is during a flare up. What I couldn’t fully grasp was all the extra that sprung up along with it.
Over 14 years of CRPS type 2 from a mid-metatarsal separation. I’ve had several lesions removed from my liver, my kidney’s have declined, my uterus lining is inflamed, diagnosed by ultrasound and surgery, with a suggestion to have a hysterectomy. Stomach lining inflammation, and now colon inflammation confirmed. I’ve had an infection for over 2 years. My white blood cell count has been elevated above normal range. I’ve been treated for high blood pressure for a few years now with Lisinopril and recently put on Hydralazine for when it gets above 180/. Maybe a course of antibiotics will help my belly. I still have to followup. I was given 12 photos of my insides after procedure. I’ve been extremely Vitamin D deficient for years now with only 1 testing where I made it into the normal range. My blood is monitored every 4 months.
I have another report that will be ready on the 15th of the month. This one may have CRPS documented as part of the cause. It was at the feedback session. I underwent those tests awhile ago. Still have a few things to work on in regards to the sleep disorders, narcolepsy, brain, brain stem and other issues, but things are moving a long. I’ve been using an Auto Servo Ventilator for about 3 years for OSA, CSA with Cheyne Stokes. It hasn’t helped with the EDS, it has helped with breathing. It’s ability to record every breath I take, don’t take, deep breaths, short breaths and so much more is amazing.
I don’t contribute everything to CRPS, I know that it is part of what’s going on. If doctors aren’t going to consider them related and document it then how can I? I could never go to a new physician and say my insides are coming apart do to CRPS and them ask “who told you that?” and me say “I did”. I’d get laughed right out of the office or not taken seriously about what really might be true and most likely is. That’s why continued awareness, research, documentation, diagnosis’ and timelines are so important. There are many other’s who have developed similar health issues. If we help educate then eventually documentation will take place. We know there is literature to support internal organs being affected, but hardly any providers recognize it.
I’m not sure yet what the plan will be. I should know more this upcoming week. I need to verify too. My procedure photos I came home with are copies. In the copies it shows areas of white outs, white space and white dots, so on film that would look different. I need clarification. I just keep bleeding. JP drain in 2013 for internal bleeding, a hemorrhage during wait period for second surgery months later and during the surgery and again more bleeding. Hurt, hurt and hurt.
But what do we do..
.. We go on.