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So i saw Gi monday.

He didnt seen concerned about my bloods (on jons post)

Went through the usual and he wants me to start aza.

Now, im terrified of meds, the surgeon said theres no point and heres the major point

Id be relying on a computer system to monitor me

And

He said hed see me in 8 weeks, appt arrived, its for october.

Saying that, the last one was meant to be 2 week review and was sent for 11 months time and i complained.

He said it wont fix the stricture. Last time i was given an info sheet to 'make my decision' which was to leave it.

I know a couple of people taking aza,neither are well.

Im unsure what to do.

Do i carry on winging it?

To be fair, its been 25 years so far and th main prob is the 20cm stricture will be removed at some point.

This disease is rubbish. I feel for all of you others.

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21 Replies

  • Posted

    I can help you out here a couple of years ago I was in trouble with my Crohns I couldn't get more than a couple of days together pain free I had a colonoscopy and they found a structure I had been on mezalasine for 20 years so my specialist changed my tablets to azaphaprine you have to get your bloods checked once a week have is been explained to you why ?? I have them checked every 3 months now, I also saw a surgeon why was happy to do the operation but suggested I stuck with the tablets my tablets were changed to different one but in the same family as I had pains in my legs but it turned out it was nothing to do with the tablets must say my tummy is much better pain wise but at some point I'm sure a op is enevatable BUT if you have it you are given azaphaprine after the op anyway are you in the uk ? You cannot take them in the uk unless your bloods are checked regularly !!!!! Jon
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    • Posted

      He said something about 2 weekly to start?

      have they eased the pains of the stricture?

      i am in the uk yes.

      did you manage to get your bloods done

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    • Posted

      Yes they have but I belive they don't suit everybody if you don't have your bloods checked regularly you won't get a repeat prescription And its your responsibility to get them done has it been explained what the tablets do ? Basically if the tablets don't work your at the end of the road and the next step is an op or that's what I was told . Yes I got bloods checked yesterday and I've Recieved a questionnaire from the Drs today and I'm going back to see her early next month Jon
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    • Posted

      No, it wasnt.

      The clinic nurse said not to start until o had had bloods done, but she isnt the ibd nurses.

      Im on 6 month reviews with the surgeon and he said i wont gain weight until its out.

      Oh well more fun of the fair.

      I sort of think it was easier when i didnt have a name for it.

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  • Posted

    Why aren't they removing the structure??

    It seems pointless and dangerous to be taking drugs that will not tackle the problem and put you at risk of other complications.

    I've had the same problems with appointments and admin, and being fobbed off regarding my bloods. It's actually very diminishing not to mention frustrating!!

    Back to your structure...... The Modulen IBD diet is very good if your gut needs a rest. Especially if there's a structure. It will totally nourish you without the pain of solid food. It's a substitute for steroids and all the other stuff. I've used it successfully on and off for 25 years.

    If you feel strong enough maybe contact PALS and complain about your appointment/meds situation. They may be able to help.

    Hope things get easier for you soon

    Hannah

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    • Posted

      Thanks hannah!

      I actually went through pals to get my appt moved!

      Ive not had a commitment on the stricture (theres 2,but i think the others small and they said the bowels move all the time so cant tell me where it is,the other one is terminal ilieum, no suprises there­čśü)

      Im having a tough time believing the meds will help when they appear to not!

      I actually have some elemental diet stuff here,i shall give that a go.

      It seems in the uk support and ibd nurses etc vary so much dependant on where we live!

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    • Posted

      I know they're always reluctant to remove any of the bowel but sometimes it needs to be done so that you can heal and start over.

      I've had all the terminal ileum removed in 3 resections over a 22year period. Each surgery was a bit of a battle but worth it. My weight has been more stable in the last 5 years. However, have a few problems as direct result of surgery. I'm taking HUMIRA now to see if that will help.

      Managed to avoid all the other drugs mostly. Just a few steroid stints. But the liquid diet even though tough, is far safer and so much more effective and benificial. Particularly Modulen IBD.... It's cleaner than the other options and it has a naturally occurring anti-inflammatory component. It really is a good medical alternative. Maybe see if you can get a dietician referral to help you with it.

      Anyway, good luck........ Hope the liquid helps

      Hannah

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    • Posted

      In my experience an operation is only done as a last resort plus if you have already had an operation it can open a can of worms when you are opened up again azapapine changes the blood cells so that your immune system doesn't attack your tummy the down side is technically because your immune system will be at an all time low you will catch every cold or bug that is going around after saying that I have never had a cold since taking the drug ??? Baffling ?? Even if you have the structure removed who's to say you won't develop another one ?? Anyway on a lighter note they have announced today they think they have a vaccine to cure Crohns as they are certain they know what causes it Jon
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  • Posted

    I had tried all sorts of drugs and the a surgeon was happy to remove part of my ileum and the stricture.  It took some time, about four months but the Crohns is well X trolled without medication.  Life is amazing I have just put on my first pound after losing 3 to 4 stones.  Rarely any pain and the bowels although not perfect are well controlled.  I am in the uk and being very well looked after even though 74 and had Crohns 5 years.
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    • Posted

      Another thing to consider is who is going to pay you while all this surgery and convelesance afterwards ? My boss would pay anyone in full for something like this depending on your service time and and you weren't phoning in sick every time you sneezed lol but now new laws have come in and your boss has to treat every employee the same mine is around 30 days full pay inc weekends but the company handbook is in the process of being rewritten to just 15 days and that's if you have been working for them for 10 years plus ??? Jon
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  • Posted

    Hi. I've been on azathioprine since 1995 and it has kept the Crohns really well controlled. I've had all my large bowel and majority if small bowel removed and only have 1.70m of small bowel left and that isn't in great condition dye to all the disease that occurred prior to 1995. I had my last stricture removal op Oct 2014 done at Southmead hospital Bristol by Miss C Burt and went to her as she specialises in IBD surgery. It was my 8th surgery.

    You are allowed to choose any surgeon and hospital you want. Just research a surgeon who specialises in IBD surgery. You can even some of them at private hospitals under NHS.

    When you start the azathioprine you will have blood tests initially every 2 weeks to check your liver function as aza can cause liver function issues in small number of people. If it starts to affect liver function it will be stopped immediately. After 3 months you will then go to bi monthly blood tests . It is an old style med and takes 3 months to start working properly in your system. They may also do a test to check levels of aza to ensure you're getting right dose. It had been a fantastic drug for me and will be on it for rest of my life.

    I stopped it once, on advice of my gastro as had been in remission for 5 yrs at the time and worst thing I ever did. I had my worst ever flare and they put me on Humira which had just been launched as it gets into system quicker. The Humira caused me to develop Lupus which is permanent and has left me disabled and in agony.

    Be wary if Dr's tell you once in remission you don't need any med's at all - because Crohns continues on a microscopic level which cannot been seen and it gradually builds up. By the time symptoms are bad enough to show up the disease has taken a good hold and can then mean going on much stronger medication and steroids. Look at aza as a maintainance plan.

    If it was me I would demand the surgery to get rid of the stricture and ensure I also had some sort of ongoing maintainance medication.

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    • Posted

      I'm actually not far from you in Wiltshire.

      youve had a pretty messy time of it being left with such a small amount of guts!!!!

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    • Posted

      I'm in Wiltshire too but after many horrific experiences at RUH I researched for a new surgeon and found Miss Burt. I saw her originally at The Circle Bath which is the private hospital but as a NHS patient. She then said due to the massive surgery needed because of all my previous ones I would need to be under her at Southmead. Fantastic new build hospital. Individual rooms with ensuite bathrooms at Southmead and I spent 8 weeks there as was so unwell they had to put me on central line TPN for 6 weeks before she would even do the surgery.

      Ask your GP to do you a choose and book and go and see what she has to say. If you go NHS to see her at The Circle can get in pretty quick.

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    • Posted

      I agree with the vast majority of what you say although the surgeon told me if you have been opened up before it can open up a box of worms and I decided to take the aza tummy is generally good it's the other symptoms of Crohns which kill me the things that are nothing to do with your tummy Jon
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    • Posted

      Yes I agree surgery can cause complications such as scar tissue but if someone is at the stage of having to go on a liquid diet as the stricture is restricting what you can eat then that to me is a no-brainer.
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    • Posted

      A lot of people don't realise it. Don't just assume Dr's are there for your best interests. Research and investigate options, it's your body and your life and if your not happy with one Dr's opinion check to see if other options available. Not all Dr's have all the up to date info of the illnesses they are treating.
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