Awaiting op please help!

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Hi I was diagnosed with chrons disease about a year ago I've had all the tests blood tests,endoscopy,colonoscopy and MRI tests and my recent visit to a specialist has ended up with me been told that I had two options which really turned into one option as the first was injections and second surgery but then told wouldn't be no use having the injections as my small intestine is more damaged then first thought so not going to be any good,I'm booked in now to have the op of three feet removed but was just wondering if there is anyone out there who's had the same as I'm panicking about the op plus how long I will have a bag for I've been told that I'll have the bag for 8 weeks after op then they can rejoin my bowel,I hope someone can help me pls out there thanks Jane....😘

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  • Posted

    I too am awaiting the op for 30cm to be removed.  For the last 5 years they have tried almost everything and it hasn't worked.  I don't know if I will have a bag or not.  
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    • Posted

      Hi think it's the same op I had 30 years ago.  Just remember, life without pain is good and when you start eating again wean yourself back onto food the way you would if you were introducing a baby to solid food.
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  • Posted

    Hey Jane. I also have Crohn's and I already had 2 surgeries. They are not very pleasant and it takes a bit of time to recover but you will be fine so don't worry. You might have some ups and downs but you will get better as time passes. As in regards to the bag. When I had my second surgery they also told me I will have the bag for 8 weeks then they will remove it. But after the surgery I woke up without a bag because it turned out my that the rest of my bowel was in a pretty good condition and there was no need for it. I hope it goes well for you and don't worry you'll be fine xxx
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    • Posted

      Hiya its Jane thank you for replying to my message and am so pleased to hear that your surgery went well and you didn't have to have the bag,I've received a message off my local hospital and think my surgery is going to be in January now so after Christmas which I am pleased about because still haven't started my shopping,I'm still in daily pain and is now with anything and everything I eat,can I just ask after your surgery did you go on any medication would love to hear from you again,so stay in touch and thanks again Jane.🙋
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    • Posted

      Hi Jane. Glad to hear you have your surgery sorted out. About few weeks after my surgery I was put on methotrexate and was on it for about a year but I didn't tolerate it very well so I stopped. Then I went on for about a year without any drugs. Now I'm on humira and tioguanine and it seems to work well so far. In regards to your pain after food it might help to avoid food with bits in it like grains and seeds as they cause irritation. Also eating more liquid stuff my help take the strain off your bowel. Good luck with your Christmas shopping wink and hope your surgery goes well xxx
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    • Posted

      Hiya justyna thanks again for replying to my message ive really got myself in a bit of a mess with worrying about this surgery and having the bag fitted,you really settled my thoughts about everything though by replying to me,I'm just so worried about what's going to happen before and after,I'm so annoyed with my hospital as in 2013 I was admitted about the constant pains in my stomack and abdomen and have been shrugged off for a year with acid,indigestion and also told last hospital admission I had an infection when all along it was chrons so because of the time issue my small intestine a bit of mess now so only surgery will do I just don't no what to expect with everything regarding the op is going to happen,I've received some notes of my ibd nurse about some drugs so was just wondering if they are what I will be given after surgery they are called Infliximab i was just wondering if anyone had heard of that,anyway thanx again and really pleased someone replied to me.😘
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  • Posted

    Hi. I've had Crohn's for 26 years and had my ileostomy bag since I was 20yo. I have never regretted having the bag fitted as it gave me my life back. Since then I have had 7 other surgeries for various bowel abscesses, strictures and removal of colon and most of small bowel. I now have only 1.5m of bowel left and that isn't in great condition.

    Everyone reacts to surgery recovery differently. When I was younger I bounced back very fast, even going back to work 8 days after my ileostomy surgery. Now I'm older is takes my body longer to get over surgeries.

    Good luck with your surgery. Don't worry about having the bag fitted, in the big scheme of things it's a tiny inconvenience.

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    • Posted

      Hi Stick insect and thanx for replying to my message,my op is planned for January now I'm still a little nervous about it but as you say its better than having this daily pain I go through and after I eat anything now so been trying to eat light and liquid foods most of time,I've just received so info off my ibd nurse through the post and its about Infliximab I don't no anything about this so if you've heard of this type of meds I would be really grateful if you could reply again too me,well thanx again and hope you stall well Jane😘
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  • Posted

    Infliximab is a type of drug called a biologic or anti tnf. They target the immune system to try and reduce the severity of the Crohn''s. The idea being that as Crohn's is an immune system disease if they reduce the immune system then it will stop attacking the bowel. Some people have had really good results on these newer drugs. Trouble is, Crohn''s is one of those diseases where not one type of medication or treatment works the same for everyone. Sometimes it us trial and error to find what works for you.

    As with everything, find out the pros and cons, why they feel it is best for you, how long before you should see result and what other options they have.

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