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New diagnosis but had no follow up

Posted , 7 users are following.

jordana16652
jordana16652

I was referred to the hospital and had a colonoscopy at the very start of October. I was referred by my GP and I had experienced blood in my stools for a long time and it seemed to be getting a lot worse. On the day of my colonoscopy I was given the report and told it appeared to be ulcerative colitis affecting 2 areas of my bowel.

I was immediately started on mesalazine 400mg three times a day. Soon after this I experienced my first 'flare up' which was horrendous (stomach pain, urgency for toilet, lots of blood loss). I had a 2 week course of prednisolone and began to feel better.

But a few weeks later I feel like I may be beginning to have another flare up. I have not yet had a follow up appointment from the hospital, nor have I seen my GP since the course of steroids, and not sure what to do now. This is very new to me. Your advice is much appreciated

1 like, 11 replies

11 Replies

  • millie1986
    millie1986 jordana16652

    Posted

    Hi Jordana,

    I'm sorry to hear your going through this! Its very horrible to control & it sounds like you are in pain

    I had my colonoscopy 5th January and I go to the hospital tomorrow to see the led nurse ( my first appointment since 5th January) why don't you call your doctors office and see if they have sent any information out to your surgery?

    Worrying about your next appointment could be making your tummy flare

    I hope this helps x

    • jordana16652
      jordana16652 millie1986

      Posted

      Thank you for your reply. When I first saw my GP they confirmed a referral had been made for a follow up, yet I never received an appointment.

      I will contact my GP and ask them to refer me again as it seems to be taking time to get an appointment. I've searched the internet about ulcerative colitis but would really like some advice from the doctor/consultant.

      Hope your appointment goes well x

    • millie1986
      millie1986 jordana16652

      Posted

      In January I had the colonoscopy n basically got a diagram and paper saying I had ulcerative colitis! I asked the nurse and she said "read the leaflet" I said.. But what is it?? And is it similar to crhones? And she said "just read the leaflet" so basically my husband and family are saying right ok what is it?? An like?? I don't jnow!! So tomorrow is my appointment and they go over all my biopsy results and stuff I'm nervous but will be ok

      You really need to chase this up. Call your doctor first thing tomorrow and ask for am emergency appoinent. If you can't get one tomorrow make sure you get one before the weekend as I always feel the weekend your mind runs riot and you can worry more!!

      One thing I've found with this is if you can focus your mind on being well your stomach won't be as bad. A great mindset is half the battle. With the ulcerative colitis ice been bleeding non stop blood in stools everything since last September! I'm fed up but realise it could be a lot worse!!

      Can you please let me know how you get on? I only joined this forums last month as I was desperate for some answers and a little comfort from people who are going through the same thing!! So I'm guessing you may be the same!

      I am lucky I really don't get that much pain just now and again however im always bloated and as far as I'm aware my UC is "moderate"

      Take care of yourself

      Millie 28 year old female x

    • kittd
      kittd jordana16652

      Posted

      Hi Jordana, sorry to hear you're having pain & a flare up. You definitely need to see a Gastro Dr. Ask yr GP which Gastro Dr you were referred to who did yr colonoscopy. Explain you haven't got hosp appt. The hospital shd have made a follow up clinic appt after yr colonoscopy to discuss results & treatment. Also yr GP shd have had a letter about yr colonoscopy ask what it says about follow up appt. There shd be a Gastro Nurse @ the hospital you can ring & they can advise you (you'll need yr hosp case sheet no. which wd have been on yr hosp colonoscopy letter). My Gastro Nurse has fitted me in clinic in the past.

      Good luck & don't worry about pestering - you need to get help & more info from Gastro drs. Hope you're feeling better soon.

  • gabe99
    gabe99 jordana16652

    Posted

    You should go see your doctor as soon as possible to see what's best for you.
  • jon13689
    jon13689 jordana16652

    Posted

    Hi Jordana,

                     That sounds very much like the same symptoms of my wife Marie who is going through the same thing, after her second flare up things started to calm down.

    When she finishes pentasa they put her on octasia which seems to do ok.

    You should soon get another appointment, they arent fast are they, and they will advise you from there.

                   Good luck Jon and Marie 13689

  • jordana16652
    jordana16652

    Posted

    Thank you all for your responses. I contacted the gastroenterology department directly. They advised me that a referral had been made last year. However, they are unsure as to why I have not had an appointment.

    I have not yet had an initial follow up only a letter stating a diagnosis of ulcerative colitis and suggesting that the biopsies also indicate this.

    I am expecting them to get back to me regarding a follow on appointment (hopefully asap). In the meantime I will contact my GP tomorrow regarding medication for my flare up as I'm feeling very uncomfortable and bloated today.

    Thanks again for your responses. I'm finishing this very supportive smile

    • jon13689
      jon13689 jordana16652

      Posted

      You are extremley welcome

                               Good luck Jon and Marie 13689

  • jordana16652
    jordana16652

    Posted

    Autocorrect! I am finding this discussion very supportive
    • kittd
      kittd jordana16652

      Posted

      Glad you're finding this site helpful. It's nice to get support from other people who understand what you're going through. Sounds as though yr hospital appt has slipped through the net! My GP prescribes my medication as advised by Gastro dr & yrs might be rhe same so even more reason for you to have a hosp appt to sort medication for you. Hope you get appt soon & you get medication sorted. Gd luck x
  • diane03986
    diane03986 jordana16652

    Posted

    I went to see my IBD nurse 2/2/15 I told her about my joint pains she reduced my Mercaptopurine down to 50mg from 75g

    I was on the 3rd day and started with pain in my shoulder. I carried on then 4 days later I couldn't stand the pain I couldn't lift my arm.

    I felt like what i would imagine the pain to feel like if I had broken my collar bone, then the pain went into my back in the middle off my shoulder blades and ribs.

    It was weekend so I phoned out of hour Drs who told me to go to A&E.

    They did bloods and X-ray everything came back fine they gave me strong pain killer which I knew was going to start my constipation off again ( my IBD nurse has a handful of patients who suffer with UC caused by constipation) movacol at hand!!

    The following day I was crippled I couldn't move for the pain it hurt when I took deep breaths. I also noticed I had a lump on my collar bone where it attaches to your sternum

    Off to A&E again they did bloods again ECG, and CT scan, again everything came back fine. I still was crying in agony. They refered me to the Medics which then refered me to rumertology.

    They looked at the scan and said they couldn't see anything so I got sent home on tramodol and Ibpurfin the Dr said we will give you a weeks worth because it's not good for my UC. Then 2 days later still in agony painkillers never touched it I had not slept I went back to A&E I was seen by a very sarcastic young Dr who reminded me a few times that they couldn't find anything .

    He did some special bloods that had to be sent away to London so wouldn't get results for a few days then said he has made me a urgent appointment to see rumertology and to have a MRI scan. Lucky they had a cancelation that day. Hey Ho they found something I am on Prednisolone now which have help the pain finally and I got a phone call yesterday the scan shows I have inflammation all through my bones it's connect to my UC they think??? so waiting for test now on the lump and other things. I have had to take a lot of laxatives due to the painkillers so had bad cramps as well. They have stopped the Mercaptopurine altogether now . I I am waiting for my IBD nurse to get back to me I emailed her about what has gone on.

    I'm sure it's the Mercaptopurine that has triggered all this off.

    I started writing this at 4am this morning because I have had cramps I am waiting to get ready for the toilet run! The pain in my shoulder starts hurting and wakes me up as well but once my steroids kick its gets a lot better.

    I ️A getting a bit low in mood with it all

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