Our story

I have put our story because my husband Pete has Crohn's but I must say it does effect other people in the home. He has had bowel problems for about 3 years but last year started with more toilet runs, pain, more blood etc. After the usual tests then a spell in hospital it was diagnosed as Crohn's disease. After lots o f steroids last February seen another stay in hospital. He had a blood infusion when in there. My mother had a heart attack at the same time so it was a case of running from one side of the hospital to the other.:shifty-t: He lost 3 1/2 stone.
Pete is my carer as I have epilepsy and diabetes but rolls have now reversed and there are times when two cards resting against each other and hoping one doesn't fall pushing the other over!!
In Feb he was started on Azathiaprine but his white cell went all to pot and he was taken off it. Three weeks ago he started 6-MP. He has been very tired and nauseaus so I rang the GP to see if they was a tablet that would take the sickly feeling away. Whilst he was talking he said he noticed that Petes red cell count was getting low - it was 5 when started last week was 3.9 and yesterday was 3.1. No wonder he was feeling sluggish and out of breath. A call from the hospital came this morning to say stop the treatment and come in on Monday. So we start again I am keeping away from brickwalls incase I bang my head against it. Roll on the time when I can get a little back of my old husband and walk the dog over the moors, dig the garden and generally go places without forward planning allsorts . So sorry to have rambled on but this is the site were people know what we are talking about. Debs

Hey Debs, :welcome: I am glad you found us and moreso because 6mp for me was making me really sick and bothered my liver within a week. I quit taking it and shortly after my doc said to go off it...no kidding. The immunosuppressors can back fire. With having an antoimmune system your body can resist meds and like a vicious cirlce, the disease gets worse. Just a thought but may Remicade or Humira could be his drug for him. I figured out you must be in the UK because we dont use stones for weight.

There are many people here from the UK, and a few are on holidays at the moment and the other ones daughter is having a resection today.

I am lucky that my husband is healthy and strong but I too worry he will get tired of it but he says he takes his vows seriously and he will help me fight this to the end.

I feel for you too. But you yourself have issues as well, so you need to be each others support. As you know we are here to help too, any questions or vent or laughs because we need the laughs which are few when your disease is moderate to severe.

Hope you continue to stick around,, we know all about the brick wall!:angry-banghead::angry-banghead:

Hi deb and :welcome:

I'm glad you found your way here. Whoa, no wonder your husband feels like he has been through the wringer! Do you know where his Crohns is located? If it is in his ileum he may also have anaemia induced by B12 deficiency, low folate, depleted iron stores or a combination of these that won't necessarily in a haemoglobin count. Also the fact he is bleeding doesn't help either! I hope the hospital gets things sorted for you on Monday. Please keep us posted on how Pete is doing and how you are also managing with things.

This is great place to hang out with heaps of friendly and knowledgeable people. Welcome aboard!

Take care,
Dusty

Hi Debs, welcome!! I hope they find something that agrees with Pete soon!! Good luck!!

Hello! I am from the UK too! Good luck tomorrow, I hope they find something that works this time!

hi Debs, welcome to the forum (and hi to your hubby too!)

i'm glad you found us - it sounds like you really need some support & understanding right now.

sorry to hear Pete is going through such hard times right now, thank goodness he only has to wait till Monday to see the consultant - hopefully he'll come out with a prescription for something which will suit him better and get him back on track.

i know these are really hard days for you both, but hang on in there - it will get better. sometimes Crohn's is one of those difficult conditions where not only is it difficult to diagnose, but also difficult to get the right meds (or combination of) which work and suit the patient.

keep us posted, and don't forget to lean on us for anything, anytime.

Thanks for your replies. It is in his ileum. He is already on iron tablets and has been for a while. If he has tried autoimmune suppres. is Humira from another "family" of drugs? Anyway not long to wait, he is hoping that they don't say that his blood cell levels have to go back to normal first (which takes more time) before they think of the next thing.
Although he is a normally cheerful peron and looks forward he is feeling rather glum and negative, doctors can sort the physical side but its left to people who are at home to deal with mixed emotions isn't it?
Yes I am from the North East of England.
Will keep you posted :ghug::ghug:

Wrote an update on Petes visit to hospital on "Treatment" thread.