Have you got UC and have suffered a DVT and or a PE?

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We have experience of an avoidable DVT that caused major problems that was because of lack of blood thinners after abdominal surgery. Do you have any experience of this that you can share? Thanks.

 

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  • Posted

    Hi Sheila91262.

    This is a slightly different answer to the question you asked, but nevertheless perhaps it's of interest. I developed rectal bleeding in the second half on 2011 just after I'd seen an orthopaedic surgeon with a view of having both hips replaced and subsequently receiving a date for the first operation. Ten days before admission to hospital for that procedure I had a colonoscopy and was diagnosed with UC and had to postpone (and ultimately cancel) the hip operation due to the colitic bleeding. I developed a DVT (and I suspect a PE) some six weeks after the diagnosis in the common femoral veins in my right leg, from just below the knee to just above it. It's left me with damaged valves in those veins and mild post thrombotic syndrome, I still haven't had the hip ops and have been told that I'm now a very high risk patient for developing further dvt's if I decide to have the hips replaced.  As a surgeon charmingly told me 'I could easily be scewing the lid down on your coffin' if I proceeded with the ops. So here I am some 4 years later in increasing pain and immobility and still patiently waiting for a referral to a more specialised hospital to see what they can do for me. I really must get my will sorted out.  smile    

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    • Posted

      Hi, sorry to hear about your dilema. Did you know that IBD or UC sufferers are upto 3x more likely to get a DVT? Has anybody given you an idea of what order these problems should be sorted out? If you want the best place to get advice and treatment for your circulation problems the place to go is St Thomas' Hospital London. Your GP can referr you.

      The reason why I asked the original question is that my son had a massive DVT which has left serious scarring in his left leg causing Post Thrombotic Syndrome which he has treatment for at St T. They are only place in UK to treat by stenting. He has his op in 2 weeks  by Mr Stephen Black, vascular consultant.

       I want to speak to someone with a DVT and/or PE as he developed his post abdominal surgery DVT as he was not blood thinned as he was, wrongly, considered low risk. I want to find out if others have had this problem.

      My son had 2 more operations after his healed DVT, they took great care that his blood was thinned during and after the ops. Hip etc replacement surgery is followed by course of daily blood thinners. You can't go on being in pain indefinitely. If you contact St Ts then they could advice what needs to be done.

      Has your UC settled down now?

      Good Luck.

       

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  • Posted

    Dear Sheila,

    Many thanks for your quick response.  To answer your question, I knew very little about UC when I was originally given the diagnosis in hospital, but like so many people, when I got home I googled the disease and what I read both alarmed and horrified me, I don't mind admitting. Unfortunately from the date of the colonoscopy I had to wait over three months for an appointment with my gastroenterologist and the dvt formed during that period. I won't bore you with all my problems, but I am now aware of the increased risk of developing further clots, but as you say I'm not prepared to go indefinitely getting ever more immobile due to my osteoarthritic hips. It's already been nine years since I first had twinges of pain. At least I am now on warfarin for life thanks to the dvt and a previous episode of paroxysmal atrial fibrillation. I've been referred to King's College  Hospital for the hip surgeries and am currently awaiting an appointment letter from the hospital to meet with an orthopaedic surgeon to diiscuss my options and the risks, which I know are considerable. I have other health issues which also increase my risk of developing further dvts, so I'll trust to luck and pray that I am fortune smiles upon me and I survive both ops.

    I am so sorry to read of your son's problems. May I ask how old he is? UC is a wretchedly horrible disease to develop and then live with, without the additional worry of damaged veins and dealing with sometimes very painful post thrombotic syndrome. I'm afraid I am unable to ansswer your specific question, but I would be extremely surprised if some others haven't had a similar experience to that of your son. I'm surprised he wasn't put on an anti-coagulation drug, such as 'clexane', at least for a short period to prevent the clots developing,  but my knowledge of such things is very limited and it is a great truth that a littgle knowledge is a dangerous thing.

    My UC is behaving itself at the moment, thank you so much for asking, and has been in remission for over a year now. I don't know whether I am allowed to say this, but I have just started a twelve week course of a new and promising probitoic drink. It's too early in the course to say whether this will work for me, but research suggests it can be helpful in cases of IBS and IBD. You may wish to google the product and see what you think. I hope this isn't seen as advertising the product.

     Thank you so much for your good wishes and helpful advice; I am most grateful to you and in return please accept my very best wishes for your son's forthcoming operation. I hope and pray it will be a great success.

    Will you please let us know how things go?

    Peter   

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    • Posted

      Hi again. Glad to hear your UC is under control. My son was unlucky enough to be one of the 1/3 of people who develop UC in the ages 15 to 30 who go straight to severe and struggle with being controlled by the drugs. He went to A&E of his local general hosp as he was becoming very ill because of blood loss and was malnourished and anaemic. They tried to heal his colon with strong drugs on a drip but he perforated after only a few days and had an emergency ileostomy. He healed well and was discharged after 14 days, 9 days of which were in critical care. We were so involved with the UC and operation that we didn't have any knowledge of DVT and his high risk. The hosp had him on the usual daily blood thinners but failed to assess him correctly and he was sent home with nothing apart from an armful of antibiotics and iron tablets. That was 2 years ago next month and he is now 29 and the picture of health just struggling with the post TS which hopefull will be sorted by stenting next week. He is disease free and has an internal pouch, hence the 2 further ops, and has regained his muscle etc. We are so glad this op is available to him now. The hosp were negligent and we have asked for the Ombudsman to investigate our complaint. I was wondering if someone out there had had a similar experience. Also I am keen to inform people about their increased DVT risk as the Medics can't always be relied on to pass on the correct info.

      Hopefully the key for your future ops is controlled blood thinning so that the dvts don't form but bleeding isn't an issue too. Good luck at Kings, I hope you get the answers you want.

      We are different people now, the last 2 years have been hard but the outcomes have been as good as we could have hoped given the circumstances, but avoiding the DVT would have been better!. I ask loads of questions now and do as much research as poss as ignorance is not good.

      Thanks for good wishes and good luck to you.

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