As most of you know, I have been at Mayo Clinic in Rochester, Minnesota. This began over 2 months ago when I began to feel sick, not being able to eat, nauseated, and began dropping weight – presenting as my gastroparesis does. I went to see my doctor at GastroOne (Dr. Farees Farooq), who I have the utmost trust. We both thought that my gastroparesis was acting up and he did what any doctor would do, treat the symptoms and took some blood. I explained about the pain on my right side and asked him if he thought it could be my pancreas. He said he didn’t think so.
So we went forward for two weeks treating my symptoms and I had lost over 10 pounds. So I called him and told him I was not getting better, only worse. He asked me to come in immediately and we scheduled an endoscopy because he was afraid there was a gallstone lodged in my bile duct years after my gallbladder had been removed. Before surgery was when he realized my pancreatic enzymes were elevated and he planned on looking at my pancreas.
Once my endoscopy was done, everything looked fine EXCEPT my pylorus muscle which is usually open to allow your food to pass into your digestive system. Mine was almost closed. He opened it with a balloon to 8 mm. He said if he opened it any wider, he would take a risk of pain for me and putting a hole in my stomach. We hoped this would do the job.
Still, a week later, I returned to him to talk about these results and he wanted to take more blood work to see if my elevated pancreatic enzymes were a fluke. It was not a fluke and they were still elevated. After conferring with another doctor at GastroOne, they recommended that I come to Mayo to have several tests that are more invasive with more expertise than in Memphis. Next thing I know, I get call on Monday and my first appointment was on Thursday (of last week).
My mother-in-law, Cecelia, and I caught a flight Wednesday to Rochester and I had my first appointment on Thursday. I learned so much information in just my first appointment. He told me I had pylorus stenosis, just by reading my records. It is a condition where the opening between the stomach and the small intestine thickens usually by scar tissue. I don’t know why did he not think my pancreas had anything to do with what I as going through, but they did want to check it. Big revelation for me, you cannot have gastroparesis and pylorus stenosis at the same time even though they produce the same symptons. Yes! can have salad again!
There first plan was to do an Endoscopy to make sure my pylorus was still open from the Endoscopy I had in early November. He was afraid it had closed back up. The instruments they use for the Endoscopy and the EUS (Endoscopic Ultrasonography) are different and larger. So they are two different procedures. They promised me they would be able to do both and not have me come back.
The second plan was to have abdominal injections. Abdominal pain can be caused from scar tissue from previous surgeries (gallbladder) or from stress.
I said, okay, let’s get this done! Then I get my schedule. Remember, this was LAST Thursday. They schedule me for THIS Thursday and Friday telling me that I could not eat 48 hours prior to my test, but they would put me on a cancellation list. I asked how does that work? Just not eat until you call? I think even the nurse was flustered. She promised me that they do all they can to move patients up. So I didn’t eat Friday, Saturday, or Sunday – except for clear broth and Jello. By this time I’m down 22 pounds.
Friday, we knew they were not going to call for anything, so Cecelia and I took at shuttle to the Mall of America. I can’t walk very far without hurting. That was evident by throwing up a glass of tea at the mall. But it was good to get out and enjoy the Mall.
I’ve been lucky to have a mother-in-law with me that loves sports, Hallmark movies, and loves to shop. But it has been hard on Jay not being here.
Monday arrived and Cecelia and I went to the Pain Department and was able to move my injections up to Wednesday, but we had the option to sit as a “checker” in case a space opened up. While we were sitting there, they called me and told me my EUS/Endoscopy had been moved up to Tuesday at 6:45 a.m. YES!
We had to be in the Gonda Building at 6:30 and I was one of the first patients. The nurses, anesthesiologist, and surgeon were all just a nice as they could be. Once they took me back, I was out…and they listened to me about my anxiousness and gave me happy juice before I even went in. I don’t remember much after the surgery except they had decided to entebate me because I had thrown up and because so many tube would be going into my stomach. The cough bothered the rest of the evening, but I was able to sleep.
Wednesday, (today), I was scheduled for my abdominal injections. These were trigger point injections which I explained to the three doctors in the room that I had received these for my migraines. They explained it would not be much different. When I saw the doctor the first appointment, he asked me to do a crunch. I did it in great pain. This is when he identified the abdominal wall pain. When in Memphis, when Dr. Farooq would press on certain areas, I would come off the table. They explained this tenderness does not reach down to the pancreas or main organs. This is the muscles in the abdomen protecting the organs. They marked me with pens and even though there were only two needle sticks, they moved the needles around to release medicine in difference areas of the muscles without completely removing the needle. Like trying to find a vein in your arm for an IV. They were using an ultrasound over my ab while doing the injections. Trust me, I was NOT quiet during this progress, so they knew they were hitting the right spots.
They told me I would feel relief in two days and pain should completely subside within six days. We’ll see. I sure am sore. Try to cough!
We met with Dr. Majunga, the doctor I met with my first appointment. I told him I was still hurting, of course, but I’m sure that’s being sore. The doctor said I have gastric outlet obstruction. The surgeon was able to stretch my pylorus to 15 mm. I was shown the before and after pictures and as we suspected, the pylorus was almost closed again. The stretching did cause bleeding and he hopes this will stay. Dr. Majunga and the surgeon did mention about a stent, but you have to fail two out of three stretching procedures before they will stent the pylorus.
I simply asked, “What has caused all this?” He said you have a history of peptic and duodenum ulcers, and gastric ulcer disease (combo of both). I’ve had many Endoscopies and biopsies and they have come back fine. I will not get the results of stomach and pylorus biopsies for at least 48 hours. He also told me stress is one cause. My simple answer was then give me a pill! His answer was not that easy. He knew my history from my father’s death (first ulcer) all the way through Trey’s death and he said I had plenty of reasons to have what I have. But instead of a pill, he has a book for me to read regarding dealing with stress. He knows my strong faith. He said this book deals with diets and how to live a better life without stress. Cecelia said she might be getting one too. That’s the first thing on my agenda to do before we leave tomorrow. GET THAT BOOK! Resist ugliness in life, and Consider it all Joy! I am thankful for my friends that have cared for me! You are a blessing!
For the future: I can only drink smoothies or slushes for the next 4 to 6 weeks and then I have to call him and tell him how I feel. If I feel better, I can begin to introduce solid foods into my diet, but no solid foods until then. He wants me to stay on my Omeprezole (acid reducer), which I may have to stay on the rest of my life. I also can take my nausea med (Zofran) as needed.
He wants me to go home and rest over the weekend and return to work on Monday. He realized my body has been through quite an ordeal over the last week and it takes a couple of days to bounce back.
Thank you Mayo for your excellent treatment. Thank you Dr. Bob Waller, my friend and confidant, who has checked on me 24/7 (President Emeritus of Mayo Clinic), and a special thank you to my mom-in-law for taking the time to spend a week with me and roll me around in a wheel chair!
What a ride! You’re prayers were felt! Keep praying…we don’t want C biopsies!