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

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  • Posted

    I cannot believe your problems . Sounds like a nightmare . Please keep us informed of your progress. Feeling for you and all your worries , and I thought I had it bad xx
    • Posted

      Thanks Maxime, it has been a nightmare so far but sometimes we have to go through a rough road to come out better on the other end. 

      How are you feeling now? Any better?

  • Posted

    Goodness me I hope you are all ok after surgery. I am relatively new to all this and in the past few months it has totally changed my life. I am almost scared to eat . Good for shifting weight but I have lower left pain ever day . I have also started a new job and getting through the day at times is difficult. I am.seeing the doctor again on Monday as surely I shouldn't have pain in the left every day . I have changed my diet and take cosmocol every night . Paracetamol is the only painkiller they said I could have . It's really dragging me down now ! 😬. I really wish you all well x

    • Posted

      I have lower left pain everyday I find it's just part of having DD   It got me really down at first but after 15 months I have got used to it 

    • Posted

      I can't believe you are in pain so much. I am not , only with a flare up which I have only had 1 in 4 years . I cannot believe people have to live with this pain. Surely something can be done to relieve it.

      I do admit diet is a huge part of this desease and I too am afraid to eat . People take the mickey out of me because I eat so little. I hope you resolve your pain soon x

    • Posted

      Thanks Dawnie pain management has been the most difficult as well. I don’t take any prescriptions for pain I have my medical weed permit, so that is my choice. It doesn’t take all the pain away but it does make it manageable. 
    • Posted

      Not sure the Medical Weed would be ok for me ...not sure I could hold done my job 😬😂.

      I am seeing the doctor tomorrow as it's really getting in my nerves . I have started pro biotic yogurts . I pleased with dripping a dress size . I don't want it to get bad that I have to be hospitalised . It is just this bloody pain every day . I have a high pain threshold but it's grim. . . I really hope you get some relief and keeps I updated xx

    • Posted

      I was down for about 6 months I didn't go out for fear of needing a toilet I let it take over my life. I have a high pain threshold but I do take paracetamol and fybergel also a probiotic tablet this seams to help. I personally don't think DRS know very much about DD. I think you have to live it to understand it. Good look tomorrow 

    • Posted

      Susan you are 100% correct about the doctors not knowing much of DD and having to live it to understand it! I actually did have a surgeon who did know a lot about DD. But, after seeing him for a month he left the hospital and moved out of state. One thing I learned from him, DD has been causing most if not all of my symptoms for years and years. He prescribed me the drug Apriso, which at first I was confused as they use this drug for Colitis and Crohns but by researching it further I found medical papers and studies that concluded that mesalamine (Apriso) has been successful in treatment for DD remission. I’ve been on the drug for almost a month now and I think it’s beginning to work as the left side pain is still there but noticeably better.
    • Posted

      Thanks Susan , I have things written down so I have lots more to ask . I do agree that Docs don't really seem to have any answers. I was told that the cause of this was last year I was on millions of tablets a day as I had a prolapse disc . I had a operation in September last year and I was for as a fiddle ! Then this started in May !

      This group is great for ideas ...thankyou , Dawn

    • Posted

      I haven't heard it to do with medication. I don't take any only paracetamol. I think it's just one of those things that happens. The consultant said most people over 60 have but some never know. I think I have had it for years. I could never eat spicy food or take anti inflammatory tablets. I also have IBS. Which isn't good at the moment I couldn't get of the loo on Thursday night and Friday morning now I can't go I hope you get answers to all your questions. If you think it would help could you post them. Good luck 

  • Posted

    Wow - unbelievable!    

    And I thought I had problems!!    Hope things turn a corner for you very soon.   

    What a nightmare.

  • Posted

    Oh my God. You have been through so much. I have had DD For many years and saw a surgeon twice. He put me on Metamucil everyday and watch seeds,nuts and raw veggies. Ihave been hospitalized twice as well. I hope the surgery is a success.  I can’t believe it took so many consults and tests to fine a doctor who agreed the symptoms you have warrant surgery. My last surgeon consult the doctor said I look fine why do I want surgery??? He said if I needed surgery I would be in excruciating pain  and said relax I’m here if you need me.  That was in May. Fingers crossed.
    • Posted

      I’m sorry to hear you have similar symptoms as I understand your pain. It’s been difficult getting to this point of surgery and I’m hoping for a good outcome but I am very nervous that it could make things worse but I guess it’s a leap of faith! I’m trying to stay positive and count my blessings. I met with this surgeon twice before he finally admitted that being in pain for over 13 weeks is not normal and felt this was my only option. We both looked at the ct scans, barium scans, and colonoscopies twice while he pointed out all the problem areas. My left side is the worst and most likely will be all sigmoid and part of decending colon that he will take out. I still have some tics on my right side, but because of my gallbladder we can’t tell if the pain is diverticulosis or gallbladder. So once the gallbladder is gone I’m hoping the right side pain goes away. Fingers crossed as well 

      keep in touch 

      happy to help

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