rare form of diverticulitis

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Hi my name is john and 59 years old, i am new here so please be gentle with me lol, what i have is a very rare form diverticulitis and i am the only person known in the world with this rare type, so i do know how other people feel with there diverticulitis, the type i have is slowly eating me away in side me, to read more about me please google john slater boston lincolnshire uk and you can read the full story, best regards john.

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  • Posted

    Hello,

    I am SO sorry tell me more. We just got a call from my sister-in-law husband she had another flare up diverticulitis think her 2nd time and they had to do emergency surgery and her colon repurtured and she died last night! Anyone else know of this please help! 🙏

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    • Posted

      I am so sorry for your loss, I too had a rupture / emergency surgery that almost killed me, on top of a sepsis infection caused by a perforation that was extremely close to killing me, I am so tired of this disease almost killing me 😦

      Fortunately the surgery was successful and I am currently lined up to have a reversal done if all goes well, but there are continuing issues with the skin around my temp colostomy and some muscle weakness / nerve damage issues that are making things extremely hard to stay positive about.

      I hate this god damned disease 😦

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    • Posted

      Hi Laura10524 I am so sorry you have lost your sister-in -law, it must be very hard on you to cope with all this, with this Rare diverticulitis that i have its been shear hell for me and i'm so lucky that i am still here, i nearly lost my life with in one split second, when i was rushed to hospital and i was in there for two and a half weeks and was not allowed to have any food for two weeks after the first operation, the first week i was in the critical ward, john,

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  • Posted

    Hi John. I'm in Australia. Just read your story. I think it shows how little they know about this disease. I really feel for you. Your case is really extreme, and i thought i was unlucky! I too was told IBS for years, by a specialist i saw privately too!. All culminated in a massive infection that put me in hospital. My bowel had ruptured( he said it hadn't) and unknown to me had formed a massive abscess i had for 5 months. Long story short, kept going back because i felt so terribly ill. He did colonoscopy and then panic stations! I was sent to a wonderful surgeon who did another colonoscopy and told me it wasn't cancer( thank goodness) but i would need surgery. Had bowel resection, illiostomy bag for 3 months, then a successful reversal. Taken a long time to get over it all. I was a healthy fit vegetarian, all this crap about people get it if they don't eat enough fibre really annoys me. Its simply not true. Can they offer you any hope of curing it?

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    • Posted

      Hi Rhianon_5000 thank you for your reply, i do know how it feels to suffer with this terrible disease and what you have to go through i do hope that you feel a little better now, after your surgery the first week in hospital i could not remember as i was to ill and the second week i came round and there was loads of tubes and pipes and 4 bags and other things as well and the pain was so bad and i was really weak, like you said the doctor's don't know very much at all i feel really let down by them, and when they found out what i really had gosh i never seen so many doctor's around me there were loads they gave me the vip treatment, the second surgery i had lasted just over nine hours, the had to take all the bowl out to work on it as it was also eating into my bladder so now half of that has gone as well and when the surgeons put the bowl back into me they had to attach a mesh to my spine to hold parts of the bowl up, i am on lots of medication now each day and i can not work any more as i do get alot of pain and feel unwell most of the time i still have this rare type of diverticulitis in me and the surgeons could not touch it so now i have to carry it and live with it as well just waiting for it to start all over again, i don't drink or smoke and never have done so unfair life can be, john

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  • Posted

    Hi John. I'm in Australia. Just read your story. I think it shows how little they know about this disease. I really feel for you. Your case is really extreme, and i thought i was unlucky! I too was told IBS for years, by a specialist i saw privately too!. All culminated in a massive infection that put me in hospital. My bowel had ruptured( he said it hadn't) and unknown to me had formed a massive abscess i had for 5 months. Long story short, kept going back because i felt so terribly ill. He did colonoscopy and then panic stations! I was sent to a wonderful surgeon who did another colonoscopy and told me it wasn't cancer( thank goodness) but i would need surgery. Had bowel resection, illiostomy bag for 3 months, then a successful reversal. Taken a long time to get over it all. I was a healthy fit vegetarian, all this crap about people get it if they don't eat enough fibre really annoys me. Its simply not true. Can they offer you any hope of curing it?

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  • Posted

    Omgosh John I'm sorry to hear about your experience, and I too have the same chest to groin rail road tracks scar, along with several others from tubes draining liquids after the surgery, and one more right where you have it as well as that is where my temporary ostomy is.

    What a horrible disease this is, the more I read horror stories about it, it's hard for me at times to think why is this happening to me?

    I hope you are staying positive and in good spirits, my employer has been good about allowing me time to recover as well, but have made it clear if I go outside my 3 months of FMLA allotted per year I will be terminated and that is a terrifying thought losing my income and insurance with a temporary colostomy waiting to be reversed.

    Is there any chance you will recover and start to get better, or at least not continue getting worse?

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    • Posted

      Hi rommon i do really hope you get better, the temporary ostomy bag i had was for five months before the surgeons could reverse me again and they found more things wrong inside me to put right, i also just like you had lots of tubes and bads attached to me, i do hope your employer does really look after you you will need all the help you can get to cope with this disease, there is no chance i will ever recover my diverticulitis is a very bad one and i really do not wish to see or read about any one els to have this rare type its a life taker and if you do survive like i have then you are very lucky indeed, each day is a bonus for me, my father died at the age of 62 and from internal bleeding and the report says he had a ulcer but i keep thinking was it or did he have the rare type i have, john

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    • Posted

      The surgeon was optimistic they cut all the bad stuff out, my last hospital stay I had an abscess rupture and they spent hours in surgery pulling out whatever horrible stuff was in there.

      I am getting a colonoscopy date setup this week to begin posturing for surgery, I guess I've nearly died so many times I don't really expect to live a lot longer given how different things keep going wrong constantly since this first came up.

      Sad to be in a constant state of dying at 33 years old when a few years ago I had a lifetime of perfect health, but I'm dealing with it as it comes.

      Sorry to hear you know yours won't get better, that really sucks to hear 😕

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    • Posted

      Hey rommon try and look on the bright side at least now the doctor's know and will help you as much as they can, i do know this disease really takes the life out of you and never gives you a rest bite, just think we are all with you in mind and heart when you go to have your colonoscopy i will be thinking of you all the time and also when you do have your surgery hope fully they bight just get you more better than you are now, john

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  • Posted

    John, I am curious why your surgeon did not remove your entire colon like they do with Chron's disease? Wouldn't that take care of the problem? Also I read the link you put in and I am wondering what was different for you that made it such a rare case of diverticulitis that no one else in the entire world has ever had?

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    • Posted

      Hi j_09263 the surgeons told me they could not remove the remaining diverticulitis on where it was in the bowl and could not take any more of the bowl out, the type of diverticulitis that i have fuses the bowl together and starts to eat away at it self, and also fuses to my bladder and started to eat that away as well so i only have halve a bladder left now, if you want send me your email and i can send you my doctors letter report, best regards john.

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