Waiting for surgery....my story
Posted , 14 users are following.
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
0 likes, 71 replies
james52892 mnisbett
Posted
Hiah - just read this - what a damned nuisance for you. Many thanks for sharing the story and the best of luck with the op. My observation of a friend who has ulcerative colitis (I have DD) is that you are able to tell them apart - his symptoms and mine are completely different - my only advise is that if there is any doubt at all that the sigmoid is not the primary cause of the bowel problem (I appreciate you also have the GB issue in play) then I would delay surgery until you are completely sure - once they've taken it out you can't put it back in! I'm UK based where the surgical option is only used as a last resort.
You're sounding confident with the plan though, so very best - let us know how you get on
James
mnisbett james52892
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Rubes123 mnisbett
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I thought I reply here.
I was told I have chrons then IBS still no official diagnosis. Have you found food triggers? I can't pin point any but know onions are really bad, certain meat for me
Good luck for surgery too I really hope this is the end to your pain.
mnisbett Rubes123
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Yes, I have many food triggers that I have figured out throughout the years, onions are bad for me too. I recently discovered a protein found in bananas that gives me reaction. It was back in April that I decided to have a banana for breakfast each day and by Wednesday I was starting to have signs that a flare was coming on. So I went on my flare diet, soft foods and liquids, which always included bananas for me. Well when I had that last banana on Friday I developed a full on attack 5 minutes after finishing it. This included excruciating cramps, With explosive diarrhea and vomiting, profuse sweating, and passing out. So, when that was over I figured it must be the banana. I researched it and found a protein called chitinase which is found in other things that I don’t do well with like grapes, kiwi, tomatoes, and others
I recently re-discovered FODMAPs here on this site and have been researching it. I’m going to give it a try to get through the next 16 days. We just went shopping and bought all low FODMAP foods and ingredients, which includes gluten free stuff.
Rubes123 mnisbett
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Interesting you mention fruit as I believe it makes me worse. (Grapes)
I will have to try a FODMAP diet too didn't know about that.
I also been told onions are in alot of processed food therefore best to make your own.
Keep me updated on your new diet.
What made you go gluten free too is this just a part of the FODMAP diet?
mnisbett Rubes123
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Yes the gluten free is part of the diet.
I’ve started the diet today, I’m starting with a nutrition drink called ProNourish made by nestle. It’s the only nutrition drink that is FODMAP safe that i’ve Found. I’ll keep you posted.
this is a great video to start with https://youtu.be/Z_1Hzl9o5ic
mnisbett Rubes123
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Rubes123 mnisbett
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Good luck with the FODMAP I keep you updated on mine too.
mnisbett Rubes123
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Rubes123 mnisbett
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mnisbett Rubes123
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Rubes123 mnisbett
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mnisbett Rubes123
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I tried the FODMAP diet for almost 2 weeks and did not see any change or relief. I’ve become very nauseous over the last 2-3 weeks, i’m Thinking it’s my gallbladder. Right now i’m Not seeing any difference in what I eat. I will be seeing a nutritionist in December, i’ll Share if I find good information.
Rubes123 mnisbett
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When I seen at nutritionist she just told me to chew my food and eat small regular meals and no spicy food.
Dracula mnisbett
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I'm sorry that you've been through so much. How do the doctors know that you have gallbladder problems / stones 100% ? In your post you wrote that the docs thought you' might ' have gallbladder problems . Am not doubting you at all . It's just that the doctors have messed you about so much. I get pain on my right hand side too. It's usually kidney stones . I've read on other forums that people with Diver have also got gallblader problems or kidney stones. I wonder if there's a correlation . I'm aware that Diver can cause urine infections too.
mnisbett Dracula
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Dracula mnisbett
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Gosh that sounds awful! What is an HIDA scan? The lower right pain could perhaps be kidney stones stuck in the urthera ? As I said that's what I suffer from . The pain is immense . unbearable. They say it's more painful than childbirth . Do you mind me asking what other health problems you suffer from. If you don't want to say it's perfectly okay.
I also suffer from various health problems and am just wondering if there's a correlation between certain illnesses and Diver.
mnisbett Dracula
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I don’t think I have kidney stones as they checked when they did the ultrasound.
My health problems are mostly gut related, IBS, diverticula disease, gallstones, and possibly colitis. The last gastroenterologist said I don’t have Colitis but I was hospitalized in 2011 for Colitis. I’m seeing a new gastroenterologist tomorrow, so hopefully I’ll get better answers.