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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  • Posted

    OMG what a performance. Are you in the U.K.?  I would have gone crazy with them I hope you get sorted and it stops it all for you 

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    • Posted

      Thanks Susan! Lol, no I’m in Maine. Thanks for reading that long post, I actually shortened it up a bit, there were still lots of other stories. When I had my last appointment to schedule the surgeries he told me that I had other stuff probably going on but we need to address the gallbladder and the resection first.

      It’s been 13 weeks since this all started and I have at least another 7 weeks until the recovery is completed from the surgeries. At least there is some sort of end date. 

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  • Posted

    They only operate in the U.K. If it's a emergency. My consultant told me to take mabevarine and fybergel also a probiotic everyday. I have been ok until I had the satsumas. I feel for you I hope all goes well and you have a good recovery 

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    • Posted

      How long have you taken the probiotics for? Which ones are you taking? I have been taking Yakult but I'm not sure if it made me worse .  I always have severe stomach cramps but I don't get them so often after I stopped taking Yakult.  Fybergel made me feel worse .  How do you feel on it? Why did the Satsumas cause a problem?  Sorry for asking so many questions . I was diagnosed in April this year and am  trying to manage it .  Although it is hard as I've had 7 Diver infections and a few urine infections since April

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    • Posted

      The satsumas must be a trigger for you. Have you looked into the FODMAP diet? 

      I just found out out about it myself, started today even though I have 15 days until surgery, I figured it can’t hurt as everything I eat bothers me.

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    • Posted

      I have been taking a probiotic tablet for about 9 months and fybergel and mabevarine. I get the probiotic from natures best on the internet. I don't know if they help but I haven't had diverticulitis for nearly a year. I can't have yogurt ice cream satsumas eggs cheese   The DR is looking at me being celiac I don't think I am maybe just a bit intolerant 

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    • Posted

      Thanks for letting me know !  I am a celiac.  I was diagnosed recently The doctor told me that Celiacs disease can cause Diver . It might be a good idea for you to get tested for Celiacs disease perhaps? I'm also diabetic . It seems that a lot of foods give me an infection. 

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  • Posted

    I too have DD and  gallstones.   I'm due to have my  gallbladder removed 

    In just over a week's time.       I'm  so scared it's going to make things  worse  as

    I also  have  IBS   !        I never know what's   causing what   !!    Good luck with your surgery  and  let us know how   you get on.

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    • Posted

      Linda good luck with your surgery! Did they make you wait long?

      I have IBS as well, and I’m also nervous that getting the gallbladder removed will cause more problems but from what I have read there are only low percentages of problems related to gallbladder removal. Of course I feel like I’m always the one with the low percentage stuff. For example, resection for diverticula disease is a very low percentage operation, so everything makes me worry.

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    • Posted

      Hi I had by gallbladder removed about 7 years ago.  I had very little complications from it other than the paid from having my intestines filled with gas.  Anytime they do abdominal surgery they fill your intestines with gas.  I also feel I'm in the low percentage of everything.  I was told there is no specific diet after having it removed, but I can no longer tolerate bread or butter.  Instant diarrhea if I eat too much of either one.  I was diagnosed with diverticulitis about 3 years ago and was told having the gallbladder removed may have caused it they don't really know.  There is so little research it's frustrating.  I'm going through a flair up now which is why I found this site.  This is my 4th flair up since being diagnosed.  I'm hoping for no surgery because I'm scared of the side effects that will cause.  The antibiotics are making me really sick.  I'm on Cipro and Metronidazole at the same time.  Any tricks for the pain and nausea?

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    • Posted

      I'm sorry to say the side effects of the medication are pretty unpleasant, and will probably leave you feeling washed out for about a week afterwards as well.  However for the pain I took paracetemol, and used a hot water bottle on my sore parts.  Ibuprofen or aspirin are NOT recommended as they can cause bleeding.  I didn't have nausea as such, just a nasty metallic taste taste and no appetite.  I just had sips of water.  Hope you start to feel better soon.

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    • Posted

      For the stomach cramps I take , Buscapan , Diazipan and Panadol. For the nausea I take anti-sickness tablets.  Hot drinks help the cramps too.   I also peel fresh ginger and put it in a mug of hot boiled water. It is great for nausea. 
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