My diverticulitis story.

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Hi i have been diagnosed with diverticlar disease nearly 2 years ago.

it all started one day after work i felt run down for around a week and come home from work exhausted with a slight belly ache that became increasing painful i thought to myself ill have some dinner get to bed and try and sleep it off (how wrong was i) my partner come home later that night finding me in a cold sweat doubled over in pain i cant really remember much as i was in so much pain and fevered she dragged me to A & E against my will as i got in the door i collapsed thats all i can remember for 2 days i woke up in a ward with a drip there was a few doctors asking about my symptoms and i had to go for a CT scan had the scan they come to the conclusion i had acute diverticulitis i stayed in hospital for 2 week almost 2 weeks of nil by mouth sent me home patched up with some co-amoxiclav, I come out that hospital feeling brand new going back in a few weeks for a colonoscopy. i never felt so fresh full of energy i felt great, it didn't last long soon the pain come back only slightly as a dull ache and bad bowel movements and bloating constant horrible bloating, including constant exhaustion.

leading me to this month my exhaustion becoming a new level not having the energy to work coming home tired, i woke up on a Saturday morning in crippling pain, i thought in my ever wisdom i would ride it out (how wrong was i) woke up Sunday morning with literally no sleep, back to A & E managed to last to the first doctor before i collapsed with pain this time, next thing i remember is a doctor telling me i will need surgery for a colostomy bag and they would tell me in due course whats coming next Ive had another colonoscopy CT scan, patched up and sent home ready for a letter for a consultation, since this point I'm still in pain hardly eating and been reading horror stories of the colostomy bag how its very easy to be given but they are very reluctant to remove it and the complications of removal are worse than your original symptoms. i have since seen my local GP to be sent to a specialist I'm still waiting for a referral Ive also seen people being prescribed medication rather than the operation.

I had a horror of a hospital visit this time round with missed medication many people unable to take blood the drip feeds left in too long causing horrendous pain resulting in me having to take them out myself because they either refused or took hours to do it Ive got huge lumps under my skin where they was Ive been traumatized by the whole ordeal. i was told my diet was key in my first flare up 2 years ago i was told i was being referred to a dietician that never happened, my second visit Ive been told diet has nothing to do with it and i would not be refereed to a dietician.

only time will tell whats gonna happen to me I'm trying to get a second opinion as i they contradicted themselves constantly saying i cant have diverticulitis only being 28 (now 30) my hospital has been on local news for years for poor performance and huge internal issues, so I'm not overly sure they have diagnosed me properly.

All i can hope is other people have had a better experience in a bad situation than i have and maybe made them think about there own situation in more depth from my story.

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  • Posted

    OMG Nightwolf, sorry to hear your tale of woe, I am speeding toward 50 and told I was youngish to be suffering this.

    I am fortunate that my GP has been on the ball eventhough I feel six months of investigations has been a long time. Within a couple of weeks of seeing me she referred me as an NHS patient to the local private hospital as our area NHS had a considerable waiting list. ( our main hospital being rebuilt)

    I found co-amoxiclav to have no effect at all, co-codamol and tramadol very poor at pain management, so now I get to see the Surgeon on the 15th Sept to give him the go ahead for the op. To be honest I cannot wait to get it over with

    I hope you have better luck soon

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    • Posted

      I'm glad your moving falward I was concerned about having a bag as a friend of a friend had a bag fitted around a year ago and was only ment to last 6 months when he went for the removal the complications wasn't explained when the first operation was carried out he was told he would have bowel shorting syndrome that he would have to eat little food often 5 to 6 small meals a day and would need the toliet every 2 hours maximum that would render him unable to work. Due to needing to be so close to the toliet so often. The nhs in my area is shocking and are clearly taking there easy option removing part of my bowel as a quick fix when I spoke to a specialist they told me a CT scan was a cheap easy way to check problems but poor image quality and I should be having an mri scan as the image is better quality and would help give a better diagnosis. I'm very frustrated I feel like I've been left with little help with conflicting information on diet and causes and prevention. I have found more information on crohns on the Internet, Diverticular has very little information. The specialist also told me because of my age there could be another catalyst or other problems that run side by side.

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    • Posted

      I have to say I am not looking forward to the Stoma, even though it's supposed to be temporary. I have a friend whose daughter has had a stoma since she was 20 owing to issues with Crohns, and have recently found out that an ex work colleague has had one following a colonectomy for Diverticular issues, so I am speaking to them about there experiences.

      Reading the forums it seems that many people have had surgeons remove small amounts of the sigmoid colon, possibly having further removals. My surgeon wants to take the whole sigmoid colon first time. I had the colonoscopy without sedation and watched the progress on screen. Not a pleasant experience and I have to say I was shocked at the state of the colon in that area, somany pouches of differing sizes. The following CT scan has shown that one of the larger pouches is lying across a blood vessel , so I didnt wish that further complication. I was told that there was a lot of scar tissue in in and around the pouches leading to a stiffening of the colon in that area

      I agree so called official sites on the web give very conflicting info, I find forums and the people who have actually been through it as a far better source of info.

      For everyone it has to be a personal journey and decision, for me it is worth the risks to try and reduce or eliminate the cramps etc. Plus the surgeon I am seeing  assisted in the surgery I had ten years prior to donate a kidney to my younger brother, so I have a great deal of faith in him.

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    • Posted

      The only thing that frustrates me is I seen photos of my colonoscopy in my notes and I've since looked up versions bowel dieseases and the pictures I recall look nothing like divaticular. In photos I wish I took photos of these as I'm sure the doctors are reluctant to give these to me. I seen what looked what I could discribe as ulcers rather than holes quite a huge difference in my opinion but I'm not the doctor and there is nothing worse than someone telling you how to do your job based on Google...

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    • Posted

      I understand what you mean, Google can be your friend but also your enemy.

      Knowing the pain it causes me and other symptoms, I trust the professionals and think I have made the correct choice for me. Time will tell

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  • Posted

    Nightwolf, I had a stoma.  I named it and cared for it like a small child.  I talked to it and became very attached.  I know that sounds really odd but it was my way of coping with something that I didn't want and was terrified at the though of caring for.  I had it for 8 weeks and had it taken down.  It was a more painful surgery than the original colonectomy and I had complications from both but I'm now almost 20 weeks out from the last surgery and I am doing very well.  No more pain except for gas on occasion.  That to me was worth all of the pain from the surgery.  One thing about surgery.  The pain is only temporary but the other pain can go on as long as you have flares.  It's strickly a personal preference but I'm happy to be where I am now.  With all of that being said, there are still foods that don't agree with me but I just keep trying them and hoping one day I will be able to eat them again.  I did try chili, salad, batter fried chicken, and tacos this past weekend.  No diarrhea so far and no pain.  I did take some gas meds after the chili for fear of gas pains but never had any.  It's all trial and error.

    By the way, I'm a almost 69 year old woman.  If I can do this, you certainly can.  Good luck on your healing.  I will be thinking of you.  

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    • Posted

      I'm glad it wasn't such a bad experience for you. I really need to speak to this specialist before I make any choice I'm thinking long term I need to know if this disease will spread and if they remove it and it comes back and spreads again even if it took 10 or 15 years I would still only be 45 maybe even 50 if it took 20 years then I would need this operation again and what situation would I be in then? Would I need a perment stoma?

      But my nhs isn't very giving in information and don't know answers to questions I have I have another CT scan date now so things do seem to be moving along...

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    • Posted

      On contraire dear Nightwolf, it was a horrible experience but I guess it seems like it wasn't because I can speak so positively coming from the other side now.  I lost 10.5 inches of my sigmoid colon, emergency surgery 6 days later because the resection leaked.  Then is when I got the ileostomy (stoma).  Had waste dumped into my body cavity. That had to be cleaned out and 5 days of IV antibiotics.  When they took the stoma down, it ws very painful.  I went home in about a week then back to the ER with bowel blockage.  Small so it passed.  Only 5 days in hospital then.  Later another bowel blockage.  This time it was an adhesion grown around by bowel choking it off.  Another leakage that lead to another emergency surgery.  In this one I lost my iliosecal valve.  This is why I have serious bouts of diarrhea.  I'm learning to eat a different way and taking it easy at the table.  I'm telling you all the greusome details so you know that no matter the case, you can make it through and will be happier on the other side.  

      Make sure you have a good doctor and surgeon.  Ask them all of the questions about reoccurances.  Don't leave until they satisfy you with answers.  Make them talk to you.  You are paying them and that is what they get paid for.  They are not gods and don't need to be treated as such.  They are there to help you and if they don't appear to be willing to do that then find another one who is.  You have to take responsibility for your own health becaue no one else will.  You can get through anything they throw at you if you understand what is happening.  

      I have the same concerns as you about it returning.  I think we all do but we just have to take it one day at a time.  That's how you survive this disease.  

       

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