Waiting for surgery....my story
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My illness has been something I've been dealing with for over 25 years. I've known that I've had diverticulosis in most of that time frame, and I've had 4 major attacks of diverticulitis in that time, two of which I was hospitalized. This past time has been the worst as I have not been getting better from treatment. This started at the beginning of August with my primary doctor prescribing me 7 days of antibiotics, after which I still was not well so they prescribed 2 more antibiotics for another 10 days. After the fifth day I could no longer eat or drink without pain. So my primary care doctor made an appointment with a surgeon. This surgeon seemed to care a lot and he had a plan, I thought. I had a CT scan prior to seeing the surgeon and he said it looked like he would be removing my sigmoid colon. I was actually relieved even though I knew that it could be a long recovery. In my thoughts I figured finally after all this time I might actually get better! After the appointment the surgeon admitted me to the hospital for more antibiotics and IV fluids. That's where the fun began, apparently this surgeon was new and did not communicate to the hospitalist and I had to explain to her why I was in the hospital in the first place. Things seemed to work out a bit more when the surgeon showed up on my second day and he spoke to the hospitalist. But she still persisted on trying to get me to eat and drink even though the surgeon said no. After not eating or drinking for 48 hours and fighting with the doctor and nurses I was discharged Saturday morning and sent home with more antibiotics and a liquid diet. I called my surgeon first thing Monday and he got back to me within one hour. He said he wanted to do a barium enema that day to get better images. They couldn't get me in for the barium for 2 weeks so I asked to go to another hospital for the procedure. They got me an appointment for Wednesday in another hospital so I did the prep on Tuesday. After seeing the results my surgeon ordered a colonoscopy for Friday which meant I had to do another prep of Thursday. To add insult to injury I also developed cellulitis from my hospital IV. I met with the surgeon Monday morning to discuss the results, in which he said I had colitis throughout my entire colon but I did not have any ulcers, typically found with colitis. He still felt uncomfortable saying for sure that it was colitis so he wanted to do a small bowel series to rule out Crohn's, and prescribed me Apriso. So I went home feeling pretty down still not knowing what is wrong, and waiting for my next appointment. On Thursday I got a call from the hospital informing me that my surgeon was no longer with the hospital and my new surgeon would like to meet with me on Monday to discuss the path forward. I met with the new surgeon on Monday and he put me on another 10 days of antibiotics, scheduled a gastroenterologist appointment and scheduled another colonoscopy because the other surgeon did not take any biopsies to rule out cancer or Crohn's. He went over my imaging with me pointing out how much damage my diverticulitis has caused and said he was concerned with my lower right side pain more than the diverticulosis. Three weeks later I had the second colonoscopy, and the gastroenterologist said it was just bad IBS, this did not make me happy as I felt he just brushed me off. I then had my gastroenterologist appointment and met with another doctor who did not know my case. He spent about 10 minutes with me and told me I don’t have colitis or crohns. He did think that the diverticulosis was causing my left side pain and my right side might be my gallbladder. He ordered another consult with the surgeon, a HIDA scan, and ultrasound. The gastroenterologist also tried to explain to me that everyone who had been telling me I had colitis were wrong. He didn’t convince me. I then met, yet again, with the surgeon to discuss the results of the ultrasound and the gastroenterologist report. The surgeon scheduled my gallbladder removal based on my stone placement and pain. We then looked at my barium scans and ct scans again, he then determined that I need a resection to remove the diseased diverticulosis section. The surgery has been scheduled for November 21st, 3 weeks to go.
Sorry for the length but I hope my story helps someone
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mnisbett
Posted
UPDATE !!
Hi Folks, I haven't posted in quite awhile, as I've been trying to figure out what the hell is wrong with me. Last summer the doctors thought it was colitis and my diverticula but that has since been ruled out. After having surgery things were good for awhile. But in May things started to go bad once again. So now I now have a diagnosis of Mast Cell Activation Disease. There are several variations of this disease and I'm currently waiting to see which one I have. Currently we are thinking it is Systemic Mastocytosis with cutaneous Mastocytosis , but I'm waiting to get to Boston to see the experts and hopefully will receive a final and accurate diagnosis. If you have problems that doctors can't figure out and your tests are always inconclusive, you should learn about Mast Cell Diseases. Go the Mastocytosis Society web site for more information.