My story

[snowy]

Hi ,
I have just been diagnosed with Crohns , its a relief to finally find out but very scary as what the future holds .
Ten years ago I was told I had the disease . I had pred and pentasa which was only slight help so i tried Chinese medicine with acupuncture noni juice etc all to no avail I spent a week in hospital during a bad flare up I was living on my own at the time and was too weak to look after myself properly my bloods were all wrong severe weight loss so they admitted me.
My future wife decided it would be better if I moved in with her, gradually my health improved and started to see a new specialist I was given a colonoscapy the results of which we that there was no evidence of crohns just pollips so they weren't sure what I had or how to treat me. Very frustrating!!!
I was still having lots of cramping and wind so I tried removing food groups and bingo milk was the problem , stopping all lactose products completely made a massive change within weeks I felt normal for the first time in years this continued for nearly four years I could eat and drink anything apart from the lactose products ,I felt I had solved the problem where the doctors had failed and to be honest a bit smug of my achievement .
Then in November last year the cramps started again just slight at first then bleeding every day getting worse I hadn't been eating lactose but I was under a lot of stress culminating with my fathers death on New Years day i bled for 8 hrs 1 day last wk very scary. am now on pred 30mg then Azathioprine they think. I feel awful so tired but cant sleep properly .Back at hospital tomorrow for blood results and a update .
Will let you know results .
thanks for reading

 

[Earnellzwifey]

Hi and welcome to the forum. I am sorry to hear about your father and that you are in a flare. I hope the new test can give you some answers and they get you back into remission real soon.

 

[Angrybird]

Hello and welcome to the forum.

I am sorry to hear about your dad and that the tum has then acted up again on you, just to confirm before this happened the med you were on was just the Pentesa? A lot of people do tend to be started on this but it doesn't seem to be able to be a long term med to keep things settled, I think one of the reasons is this is a med more designed for the treatment of Ulcerative Colits not Crohn's and it is only for mild cases. With regards to the bloods you are getting the results for is this to confirm if the Aza would be a good fit for you? One thing it may be worth asking your doc to start checking is your vitamin levels - it is common with Crohn's to have deficiences in this area and low levels can cause their own host of problems for you. Also with the Pred have they also started you on a calcium supplement to take with this?

AB
xx

 

[snowy]

hi thanks for your quick post
they are testing my bloods to see if the azza will be good for me
i am on calcium tablets 2 a day
they have not mentioned vitamin levels at all

i am feeling v unwell today
trying to eat enough calories but it is hard
this morning i had a 2 egg mushroom omelet
lunch was a bowl of scotch broth and for snacks i have had a banana
a small bowl of fresh melon with 2 tspoons manuka honey

for my tea i will be having cod with mashed potatoes and peas
but that will only bring my calories to about 1200
not enough

my resting heart rate is 88 it is normally 68
what can i do about that ?
any help would be most appreciated
thank you

 

[Angrybird]

I am not sure what could help with your heart rate other than to advise you get in contact with your doc about this. Food wise it may be worth asking your GI about having some special shakes precribed for you (something like Modulen) as these can help with easing things with the tum whilst still getting the required calories and nutrients into you.