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Chrons is coming back but consultant cant do anything ...

Posted , 5 users are following.

Helena_J
Helena_J

Hi,

My boyfriend was dianosed with chrons June 2014 after 2 years of tests. SInce then he has been on steroids, coming off them a couple of times during which he was trying some medications which both made him have severe body aches, the last tablets resulted in going to A&E with a suspected heart attack.

Since then he has just been on steroids, with an appointment for a camera just before going on to the injections. The camera was in October, the results showed good remission / no chrons so he was taken off the steroids. These ended just before Christmas and for a few weeks he was fine, now the familliar pains are coming back like before, he had a consultant appointment this week about it but has been told that they cant do anything other than start at the beginning again .. which mean having pain killers with a side effect of being a anti deperessant, these did nothing the last time and he's just been told that the next appointment will be in 4 months. he is very worried about going back to how he was before, is there nothing more we can do?

He doesnt have any specific things that upset his chrons apart from veg and he already avoids that, it just seems silly for him to have be ill again before they can do anything to help him.

He is already feeling down as this illness has affected him in so many ways, which i am sure is the same for all sufferers  but he is a stubborn one too so i can only help so much and i hate seeing him like this.

Thanks for listening.

 

0 likes, 13 replies

13 Replies

  • craig84609
    craig84609 Helena_J

    Posted

    I am sorry to hear about this. Crohn's is a progressive illness and get's worse over time. He will have times of remission where the pain and symptoms will go away. These maybe short or may last for years. The hope with medications is to encourage remission, however it doesn't always work. In the case of Prednisone it works on most, but when you stop it the disease comes back. As a result I have been on Prednisone at a low dose for many years. Despite what doctors think this can work and has for me. The agony that one goes through from this disease is terrible and if it were me I would ask to stay on the steroid until something more longterm can be found. It is a terrible disease and unless the doctor treating him has it he or she is not likely to understand what he is feeling. Taking a low dose, meaning the absolute minimum of the steroid to keep inflamation and pain under control should be implimented. Taking steroids for extended periods can be damaging but at a low dose that can be kept to a minimum. I wish you both luck with this and hope he gets better soon. Oh, and he doesn't need to go in all the time for scopes. These tests are invasive and will only show what he already knows.
    • Helena_J
      Helena_J craig84609

      Posted

      Hi Craig, I am happy that you have a ‘solution’ that works for you, I know it will never go away but it must be such a relief to have something in place to keep inflammation at bay J

      The steroid, even on the low dose was keeping things at a comfortable level, he was so much more relaxed and felt like he could ‘live’ normally again. I think that if he could go back on this that would be a great help to keep things as minimum as possible as surely getting worse again defeats the object of getting him into remission which is what they have always said.

      The scopes are always required before he can move on with the consultations, they are recording the results but I do wish they would not make him have them any more than he needs to.

      Thanks for your reply and good luck to you too.

  • sheila70301
    sheila70301 Helena_J

    Posted

    It is very difficult to get Crohns under control. After five years I ended up having a resection and at last I feel nearly normal.  The list of medication I have tried is tremendous.  If you feel unhappy with your consultant ask for a second opinion.  Sometime general gastro consultants don't have much experience of Crohns.
  • victoria_96091
    victoria_96091 Helena_J

    Posted

    Once you're on that steroids, it's really difficult to go back to normal. He should hang in there, don't feel down because that will not help but makes matters worse. He should pray for a miracle.
  • stephaney28634
    stephaney28634 Helena_J

    Posted

    Hi Helena, sorry for your husband going through.  Have the consultant not thought of Humria injections?
    • Helena_J
      Helena_J stephaney28634

      Posted

      Hi Stephaney, the consultant has said that they have to start from the beginning again, they seem to want him to get poorly again before they'll treat him with anything new. He was due to start injections after the last camera but as it looked clear they've set him back to the beginning so I was wondering what we can do to avoid the 4 month wait for the next appointment so he doesn't go back to square one and end up in needless agony!
    • stephaney28634
      stephaney28634 Helena_J

      Posted

      Hi, his immune system will be low. It, is better for him to be on injections. I suggest you seek second opinion. 
  • craig84609
    craig84609 Helena_J

    Posted

    Maybe the doctor thinks he has gone into remission at this point so they don't want to suppress his immune system with Humera or Prednisone. Lukily low dose Prednisone has worked for me so side effects are not that bad, but on higher dose it can be destructive. Humera can reduce the immune response to the point where he would at risk for dangerous infections. None of these drugs are a miracle, they all have dangerous side effects so if you can get by without it is probably the best thing to do. If he is still in pain from it then they need to find out why. 
    • Helena_J
      Helena_J craig84609

      Posted

      Thanks Craig. I know it's not ideal for him to be on any immune suppressants but I also don't think it's a sensible move to let him go back to how he was. I want him to get a second opinion, it's a waste of time and money for him to have to go thru the pain killers that did nothing last time, I bet next they'll try buscopan again. I have contacted the chrons and colitis support team who have been very good so far sending information over, just need him to read it now! He's a stubborn one, not one to push anything that's why it's me on here. I'm passing on all comments from you guys, I'm very greatful for everyone's responses : )
    • craig84609
      craig84609 Helena_J

      Posted

      Even though I am on Prednisone and appear to be in remission I can tell you I am still in a great deal of pain and it is because those with Crohns Disease have a tendency to have nerves that are hypersensitive to stimulus so we can feel pain without apparent cause such as inflammation. This may be the case either way you need to find the right medication for him that both works and keeps his immune system in tact. It is a balancing act, believe me I know. It is so tough especially for someone so young. Hang in there it does get better.
  • sonny1968
    sonny1968 Helena_J

    Posted

    Sorry to hear ,,as a parent I've seen my son on all sorts of drugs with horrible side effects ,,,now he's on infliximab which has controlled his crohns into remission and he eats most things but it too has side effects ,depression and nasty temper due to the steroids I think .There is no answer just drugs but I'm reading a lot about CBD oil ,the doctors have no comments on it but the internet does and people claim it helps ,,,have to keep reading ......
    • Helena_J
      Helena_J sonny1968

      Posted

      Hi, I'm sorry you've had to watch your son suffering it must be so hard as a parent not being able to heal him.

      Thanks for that feedback, I know of someone at work who had steroids for another illness and they made him very moody and he felt it and was unable suppressants the anger. That's not great either!

      I will look into that CBD oil. Thanks : )

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