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Has anyone been to St Marks hospital Harrow??

Posted , 5 users are following.

samantha1982
samantha1982

Like the title asks has anyone been referred to st marks hospital I've heard it specialises in bowel disease so sounds like the place to go, I'm based in Guildford and currently under the care of Royal Surrey hospital but not impressed with level of care from them

0 likes, 9 replies

9 Replies

  • rachelle52846
    rachelle52846 samantha1982

    Posted

    Hi Samantha

    I haven't but I have heard its one of the best!! I was under the uclh in London which was really good had surgery last sept 2015 good luck

  • sheila91262
    sheila91262 samantha1982

    Posted

    Hi Samanatha, it is the place to go for bowel diseases esp Inflammatory bowel disease. We went to John Radcliffe Oxford as my son was having reversal of his ileostomy and J pouch formation and they were equally good there. Our GP said go to St Marks as they are the gold standard but we had personal recommendation from a friend who had had the same op.I have a friend who has been under St Marks for Crohns and says they are marvellous, she has had several ops there.

    You need to get the best help especially as they have so much experience and knowledge and the funding. We went initially to the local gen hosp and that was a mistake, they don't see the numbers that gives them the experience.

    Good luck, Sheila.

     

    • samantha1982
      samantha1982 sheila91262

      Posted

      Someone I know was under there care few years back and he vouched for them I have a few weeks left of Steriods and currently on immune suppressants and had my last infliximab and normally once off Steriods flares occur and I just want to make sure I end up best place if I end up in hospital again and meds clearly aren't working I'm going to opt for surgery because I need to get this sorted once and for all as main and only carer to 2 young kids can't live like this anymore and Steriods only give the illusion things are ok so getting anxious that I'm almost weaned off them on top of getting bad side effects from the other meds and now on anxiety meds cause kept getting heavy chest and random panic attacks and sweats and chills etc I just need this over with
    • sheila91262
      sheila91262 samantha1982

      Posted

      Hi Samantha, sorry to hear you are struggling. In short my son was diagnosed at 27 and went straight to severe and in hospital as the steroids etc weren't working, they tried him on Infliximab but too late and he perforated in 2 places. It was too early to have found somewhere to help where they are specialist and he went into the local gen hosp via A&E. Big mistake, ileostomy was ok but aftercare rubbish. Also sent home without anti coagulents and got a massive DVT 14 days after discharge. Did you know that UC sufferers are upto 3x more likely to get a blood clot than others?

      He had fab care at JR Oxford, had J Pouch surgery there and he is fighting fit now.

      He was fine with the stoma but the pouch was available to him and as he is a sportman he wanted to be able to exercise and not worry about it. He loves the internal pouch and it has worked well so can swim and run as much as he likes.

      Wishing you the best of luck. The docs put the ileostomy forward as a last resort but he found that being pain, disease and drug free was worth the stoma and he had his life back. He was very thin with the disease and looks great now and is able to live a normal life.

      Sheila

  • Fluffe
    Fluffe samantha1982

    Posted

    Please let me know how it is when you are and how you were.  I'm in Braintree.... I was diagnosed in August 2014 (Already with IBS)... the hospital lost the inital referral; my husband also had to write for the first appointment after the colonoscopy and I've not seen a doctor since then.  The nurse is useless.  I also went to see a specialist in London privately (because I couldn't see a doctor at our local hospital) who thought it wasn't UC as the histology report didn't support it and was the result of a post infection and it would settle down (caused by food poisoning that started this nightmare) yet now gross yes- but I can 'spit blood' out of my rearend. (Possibly I'm related to some mythical creature or something huh!).  Octassa didn't agree I've gained a pile of weight, pentasa suppositories stopped working. I've just started some foam thing I got from my GP and 3 days in there's no improvement and really.. I'm now at the end of my tether with it all.  Sorry to wince on but I've not seen a disinterested doctor on a follow up at the hospital because I've not been able to see one!
    • sheila91262
      sheila91262 Fluffe

      Posted

      Hi Fluffe, You can get a referral to any NHS hospital from your GP through NHS Choices. St Mark's Harrow is not that far and they are highly recommended.

      Do you produce mucous as well as blood from the back? if you are losing blood it cannot be ignored, also sometimes an infection can be the start to other problems. The key to this is the proper diagnosis so go to the right place and don't take any nonsense.

      Good luck, Sheila

  • Fluffe
    Fluffe samantha1982

    Posted

    Hi Sheila... I think I'll write a letter to my GPs office but whether he'll do that - it's hard to say. It is like two conflicting diagnoses now but I do know it started on a short break.. within two hours of eating ack... something healthy!!!!!!  It may be a lot easier writing a letter than trying to get another appointment. I have to wait two weeks for my blood test at the surgery!!!!  (Sorry I'd meant to type 2015 in my first post!)  Its pretty much a mixture but there is a ton of fresh blood.  It sort of settled for about two weeks (though still with the blood)  but has come back in full force again!!!  Problem is with the IBS the nurse (in a flurry of emails) said oh it's that. I don't bother emailing her anymore.  I had an appointment to the dietician there after the sudden weight gain and while I'm in full flow, she hands me a leaflet for IBS to eat a 'high fibre diet' even though I'd been referred for IBD.  My husband said that was the last thing I needed!!!  This hospital of ours is a nightmare!!!! 

    Thanks! Val (aka Fluffe 'cause I'm feeling fluffe around the middle!)

    • sheila91262
      sheila91262 Fluffe

      Posted

      Hi, It is very common reading some forums, that IBS is the first diagnosis and we had that too. But if the blood becomes significant then it is v important to be eating the right fibre content and get the correct treatment. The GP has a duty of Care, don't let him palm you off.

      Sheila

       

  • Fluffe
    Fluffe samantha1982

    Posted

    Thank you Sheila. I was dagnosed it 2007 with IBS (and it all made perfect sense some of the symptoms I had had for years but as I was about to leave Canada, not much more happened with it... the doc there gave me a shot of demerol (sp) which really calmed everything down though it possibly did peak then with the move and all) I think my GP here was at a loss with it all. He did say he would write the hospital I'm currently at too but said it may still not speed it up. I suspect they will lose that too like my initial referral or the private doctor's request for the report...  So letter to him to refer it to St. Marks is ready to post!!! I'm so glad I heard of this hospital.. if it's the latter, that could only be good if with the right treatment, it clears it up.  I can live with the IBS as I always seemed to have had!

    Thank you again!

    Val

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