My partner was diagnosed with Crohn's September 2015. He had a course of steroid treatment after being diagnosed and have been on azathioprine since. Unfortunately he's still not in a good place he has put on weight since 2015 after extreme weight loss. He has serve headaches that can last 3-4 days at times. His appetite is extremely variable he can eat three meals a day plus snacks to eating almost nothing for days. He has also started to lose some weight again recently. We saw the consultant today he is being sent for another colonoscopy and for an MRI of the small intestine. I was just wondering what other peoples thoughts were on medications and any tips or tricks anyone has.
Thank you!
Written by
miss_hollymay
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Hi, it seems no 2 people are the same with Crohn's. I make myself eat 3 meals a day, I'm sick of people telling me how skinny I am!! It just makes me feel miserable. I tried Azathropine, started on 50mg, then 100,then 125ng. It goes on your body weight the dose they give you. Made me very poorly, vomiting, very bad pains in my stomach and chest.waiting to start something else in place of it plus Humira. Have an infection that's clearing up and once that's done I shall try again. You do the right thing getting support, it's a scary, lonely and overwhelming disease to come to terms with.
I hope you feel as well as you can soon and you find the right balance. He's on 175mg currently. It's been difficult to watch him battle with the disease we also hasn't seen any consultants only nurses at his follow up appointments meaning it was 'see how you are next time', 'just do another blood test for next time'. I'm glad he's finally seen another consultant however, I am concerned as to the other medications he may be given as Methortrexate had been discussed. However, I have been on this myself years ago for a different disease and the side affects where horrible.
A girl I work with is on methotrexate and she has no side effects at all apart from a rash on her chin!! It's strange how it affects us all differently. Maybe he will be ok on it!! I my self have been frightened about taking the medications. I've finally got my head round it in as much as what ever happens at least I tried what is considered to be the best treatments they have for us.are you in the U.K.? I know my partner worries about me!! He won't say it but I can see it's affecting him!! He's my rock, he makes me laugh when I don't feel I can and supports me.i have a colostomy bag due to my bowel perforating and it decided to leak in the night!! Il spare you the details but as I staggered around trying to sort things out he said don't worry my love it's nothing we can't sort out!! So I know how hard it must be for you, he may not show he appreciates what you do sometimes but take it from someone who has this awful disease he sure does. Becas informed as you can be about this illness. If your not happy with his care then speak up. Go back to the doctors and tell them your fears. I've learned the hard way as I've said before. I note down who I spoke too, what was said, when I saw them!! You need this information because communication is often a problem so you can give all this information to the doctors, specialists when you see them.
Yes, we are the UK. I feel bad at times as I have my own health issues which annoyingly can take up more of our time than his. However, I am constantly worrying about he and I know we both appreciate each other. I'm very lucky to have someone as supportive as him and I wouldn't change him for the world disease or no disease. You sound very lucky too. I shall wait and see how these tests go.
At least you've got each other!! It does make me feel really sad when people are alone and have no support. I count my blessings because even though I'm not sure I can make it sometimes I remind myself that my way of dealing with it has an effect on others too so I have to be mindful of that. We seem to have an epidemic of autoimmune diseases!! But one day they will get to the bottom of it.🙏🏻There's hope for us all and I hope you and your partners health improve sooner rather than later. Take care of yourselves 😁
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