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Looking for some helpful answers

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marie19414
marie19414

hi I am looking for a wee bit of help for my daughter, she is 18 years old and has been back and fourth to the Dr with numerous things going wrong, she has been diagnosed with fibromyalgia chronic fatigue, and for the last two/ three years numerous urine infections. She was diagnosed with IBS but pain in her stomach got so severe she ended up at A&E and was given a morpheine injection . She was referred to a gastro Dr who suggested a cakprotectin test and hydrogen breath test, breath test was clear, first calprotectin was 96 second one to be repeated three months later. She developed anal fissures and slight bleeding from the back passage, although her weigh remains the same she gets very bloated. Her last calprotectin test was 220 and she is awaiting a colonoscopy on the 20/4/16 she is still in a lot of pain and they are also still saying she has recurring urine infections, in the last three weeks she has had two courses of antibiotics canasteen cream and oesaries, she is still in constant pain, it's getting her down they have put her on. Antidepressants. I'm at my wits end because I work full time and she calls everyday to tell me how much pain she is in, it's heartbreaking to see and hear that from her. Sorry for the big spell but just wondered if anyone could give some suggestions or even if my daughters signs and symptoms sound familiar I would love to hear from you. Thank you in advance.

0 likes, 16 replies

16 Replies

  • jon1969
    jon1969 marie19414

    Posted

    Sorry to hear about your daughters problems I have Crohns and u know 2 people with fybomyaga my suggestion is to go private to get it sorted this what I did what with the nhs being so disorganised you will go for this test and this test in the end my dr said he just didn't know what was wrong with me after loads of tests so I went privately had one test and I was sorted and I carried on seeing him on the nhs she must be on so much pain my friend has fybro and she is In constant pain post again if I can help anymore Jon
  • Alfielefoo
    Alfielefoo marie19414

    Posted

    Im sorry to hear what your daughter is going through, and i hope you wont have to wait long for the scope.

    I find a hot water bottle very helpful, and low fibre diet may help her too.

    I find otc haemoroid cream soothing for fissures too.

    Ive just realised her scope is next week but i cant work my phone to amend.

    Good luck

  • beth89439
    beth89439 marie19414

    Posted

    That sounds awful. I wwent to the GP over 9 times before I was diganosed with Crohns. I was 18 when I first had symptoms. I ended up in A & E as I was also in so much pain I couldn't walk. 

    I ended up having to go Privately, it costs a bit of money but it was worth it, within 3 months  had all my scans and tests and was put on the medication I am on now. 

    It has now been nearly 2 years with no flare ups so I am lucky.

    I hope your daughter gets seen to quickly and effectively as I know how bad it can be, I was in bed for 2 months striaght at the start of being ill and I lost over a stone in 2 weeks! 

     

  • marie19414
    marie19414

    Posted

    Well, my daughter had her colonoscopy on Wednesday, previously she was at a&e with what only can be discribed as a fissure, there words. They never gave her any medication. In case it affected scope. She told Dr her bottom was really sore when she went in,she was out within 15 minutes, scope all clear, she ended up really sick, and was bleeding heavily from back passage.they wanted her out the hospital as they had finished. She told them she didn't feel well and was really sick, ended up with anti sickness injection and IV fluids. they tried calling her Dr who had already left the building at 4.30.I said to the that her bottom was really sore still and they told me Dr had given her a full look over, anyway,home at hotel for 7.15 pm being there from 1 o'clock that afternoon, slight bleeding throughout the night. I checked her bottom next morning to see a fistula type abscess on her bottom, so ihave emailed her gastro Dr ( not the one that done the scope) I took pics of it too.waiting to hear back. Went to our own Dr today and heras confirmed a fistula and two little fissures, she is still bleeding today. More antibiotics 3rd in 4 weeks, anal cream and codeine. The outcome of her scope has been put down to IBS!!Ivenever heard of anyone withIBS being in this much pain. 😔
    • jon1969
      jon1969 marie19414

      Posted

      Hello Marie I'm sorry to hear of your daughters bother do you mind me asking how old she is ? Can you expand on what type of fiscula she has ? I had an internal one which I had an op for is it piles or more than that ? I will wait for your reply before I make a suggestion regards Jon
    • marie19414
      marie19414 jon1969

      Posted

      Hi,my daughter is 18 just on the 3rd March, the fistula was like a hole in her bottom just at the entrance ( sorry if TMI) it was leaking puss, light green colour, but it looked sunk in, if this makes sense? The fissures were found today also, but two small tears in her upper bottom, also at opening. Sorry for being so dis riptide. She's been given another antibiotic, co-imoxiclav? Local Dr checked her today, but said the fistula looked less aggressive today, but it leaked through the the night. Luckily I had pics. 
    • jon1969
      jon1969 marie19414

      Posted

      Hi Marie no worries never heard of this one I think your daughter will have to take the tablets and just rest and I would also suggest eating very bland food nothing spicy nothing whole meal just things which are easy to digest also a nice hot warm bath keep her backside clean and dry ointments sometimes can be an iritation think rest and keeping it dry and taking tablets are the 3 key points
    • marie19414
      marie19414 jon1969

      Posted

      Thank you. Yes she is trying all the above. Has been watching what she eats so hopefully this will sort itself out. Thank you for your help.
    • Alfielefoo
      Alfielefoo marie19414

      Posted

      Please ask for an mri scan if she's not had.

      i don't have fistula, but my friend does and they use mri to find its source.

      im sorry she's having such a bad time x

    • marie19414
      marie19414 Alfielefoo

      Posted

      Hi Thank you for that.

      She had an MRI a couple of years ago, but that was because she was suffering from joint hyper mobility, they checked and was all clear? ( is that the one for the brain) ?? If so she had that, and bloods but her B12 was low. Just a worry so now waiting in biopsy results but think they will be ok, because her scope was clear?

    • Alfielefoo
      Alfielefoo marie19414

      Posted

      I'd still ask for one in lieu of the fistula.

      is she still under the gynae lot too?

       

    • marie19414
      marie19414 Alfielefoo

      Posted

      We dnt even know, not seen Gynae, only doc here fobbing her off with antibiotics for urine infections, time and time again. Dnt know about her Endo Dr whether he will see her again? We have to travel 130 miles each way to see them as we life a bit far from the nearest big hospitals.
    • Alfielefoo
      Alfielefoo marie19414

      Posted

      I used to live in Elgin, we used to be sent to ari even though Inverness was up the road! Never made sense to me!

      they need to find out what's going on with your daughter

    • marie19414
      marie19414 Alfielefoo

      Posted

      Yes I know, it's not nice seeing her suffer day I day out. Still waiting on biopsy results, but tbh I think they will be fine. We will just keep persevering until we get answers. Will keep u posted. Thanks for your support and feedback
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