Hi Everyone!
Judy, what a fighter you are! I am so sorry for all that you have gone through recently. You already sound like you are making huge strides with physical and occupational therapy, and I have no doubt that you will do amazingly well! Keep us posted! Miracles all around :)
Lizzie is at home, but she is still having a lot of trouble eating. Nausea, distention, vomiting, pain, etc. The only things that are a safe bet are ice cream and crackers. Her internal medicine doctor and her new gastroenterologist have been putting their heads together. They did a HIDA scan yesterday to see if her gallbladder is causing problems; they feel her symptoms are spot-on gallbladder attacks, so we will see what the test says. A port and TPN are options, but they're waiting on test results. Keep praying for her!
Also keep Sarah in your prayers. She had a promising consult with a pediatric urology surgeon and is waiting to hear back from him as to what the next step is. She has significant problems with nerve pain that they would need to get under control before doing more surgery. You can read her journal at: http://www.caringbridge.org/visit/cippelztier86
I had the consult with Dr. McCallum, the gastric pacemaker expert. He is WONDERFUL! Originally from Australia, and such a gentleman. His findings are the exact opposite of what we all thought. Here are his conclusions: I have "profound" dumping syndrome- the fastest gastric emptying time he has ever seen. He is about 75 years old and has been on faculty at the University of Kansas, Virginia School of Medicine, Louisiana State University, UCLA, and Yale, so he has seen tons of very sick people. Also, my stomach is anatomically very abnormal. Instead of being the normal bean-like shape, my stomach looks nearly identical to my esophagus! It is a long, narrow column with a tiny J-shaped hook where the duodenum is. Although I am apparently dumping everything I eat very quickly, I NEVER have an appetite (and that has been the case since I was a toddler), and I only eat because the clock says it's time for breakfast, lunch, or dinner. I am always very full, and I could go days without eating just because I'm not hungry. McCallum feels there are a couple reasons for this: 1) my stomach is very long and narrow, yet it does not expand in width to accommodate very much food- it is rigid in a sense with inflexible walls; 2) gas/bloating/distention from a bacterial overgrowth causes pressure which takes away my appetite. He said that the ileocecal valve of the colon acts to protect the small intestine from bacteria traveling into it. Of course a total colectomy removes this valve, allowing bacteria to travel from the small remaining portion of the sigmoid colon/rectum into the small bowel. He prescribed a month's worth of Flagyl for that problem, and he said that we will have to find an antibiotic plan so that I don't end up with all the adverse effects of chronic antibiotic use, and that I can't be on them all the time.
I am still extremely constipated with BMs coming only once every 48 hours and even then I have no urge, only lots of abdominal pain that necessitates that I get some stool out for relief. He is concerned that I pass solid stool with no colon. He thinks that the first couple feet of my small intestine move quickly, but that it slows down significantly at some point. He is having my GI doc order a small bowel follow-through and barium enema to see if there are any strictures anywhere. He also suggested a HIDA scan to be extra sure there is no gallbladder involvement.
His focus is primarily the stomach, as he is a gastroparesis specialist. He wants me on medication regimens to slow my stomach down, but this is very concerning to me because the medications will also affect my small bowel and rectum, and I am already so miserable with constipation and slow motility in those areas. I think these medication suggestions come out of him not knowing my case for years and knowing the severity of the rectal problems. It's hard to know a patient inside and out after two days, and I think his recommendations would be different if had had been my GI doc all along, if that makes any sense. His conservative proposal is two tablets of Bentyl taken three times a day- before each meal. I know my body will not tolerate this because even one tablet of Bentyl (once a day) makes me very drowsy, I feel like I'm not thinking clearly, I don't trust myself to be able to drive safely, etc. If I were to take six a day, I would be unconscious! Not to mention I would probably go weeks without a BM. Because my dumping is so severe, his preferred treatment is Octreotide SQ injections, one before each meal. Both Lizzie and my mom are oncology nurses, and Octreotide is given as a last resort to colon cancer patients with such severe diarrhea that they are constantly on IV fluids and chained to the toilet. It also has some hepatic and pancreatic side effects and can cause blood sugar problems. I feel like this drug would completely shut down the little motility that I have in my small bowel...to the point of obstruction. My motility is very sensitive to medications, which is why I cannot take anything for pain aside from Tylenol or ibuprofen. Narcotics INSTANTLY send me into a severe ileus, so because the Octreotide is meant to slow things down so much, all I can see is a disastrous result. He said with these medications I would have even less of an appetite, feel even fuller for longer, and would very likely lose more weight as a result. I am already very underweight, and losing more would not set me up for a successful surgery. To me, slowing things down seems worse than how they are now. He even said how tricky this is, and that trying to treat my gastric dumping could be worse than the dumping itself.
His proposal for the constipation is Dulcolax, several taken throughout the day. This also worries me because my colon quickly became so dependent on Dulcolax. He said it won't have much effect on my small bowel, but I still worry that my small bowel would become dependent on it, and if I am going to have an ileostomy, I do not want to ruin what motility I have left in my small bowel. Taking such powerful drugs to slow things down, and then throwing stimulant laxatives on top of that sounds like A LOT of pain, cramping, and spasms to me.
For nausea, he has prescribed Scopolamine patches, and I look forward to seeing if those help the nausea. I take Zofran now, but it really doesn't work, and I am quite allergic to Phenergan (cardiac event- went from 65 to 180 BPM instantly) and Reglan (tardive dyskinesia). Hopefully the Scopolamine will make a difference. I have been wearing the patch for a couple days, so I'll probably have an idea how much relief it gives after about a week. I have no problem starting on that and the Flagyl, but I want to have a long talk with my GI doc about Octreotide before attempting that. I really don't want to touch that or high doses of Bentyl at all. My primary complaint has always been constipation, hence the total colectomy; I have stomach issues as well, but I feel those problems pale in comparison to not being able to have a BM and the painful rectal spasms, and those stomach problems may get better with an ileostomy. I understand that Dr. McCallum wants to relieve the autonomic response I get from eating (dizziness, sweating, increased heart rate, shortness of breath, nausea, pain), but I don't feel that slowing my stomach down, and subsequently slowing my small bowel down as well, is going to help me feel better. He is an incredible doctor...he does things the old-fashioned way and values the patient's symptoms over the test results. When he is discussing his findings and treatment possibilities, he leans forward on his stool, closes his eyes, and rubs his head...The Thinker! He saw me for two days, and each appointment with him was about 2-3 hours. He said he is more than happy to see me anytime, and that he will conference with my Dallas doctors anytime and for any reason.
Anyways...sorry for the novel. Hope you all have a great 4th of July!
Love and prayers,
Allie