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What Comes Next?

I'm currently on azathioprine and pentasa, neither of which seem to be having a very positive effect. I've had awful side effects namely vomiting and massive hair loss, to the point where I have to cover the thinning with hair extensions. It's totally knocked my confidence and to me it's not been worth it since I don't feel a lot better. I take MST (morphine sulphate) morning and night and I can't keep relying on it. My current GI is proving to be indefinitely unhelpful, my bloods are worse but according to him 'biologically you could still get worse and stay on your feet', he's also said things about me wanting to see a female GI because I feel more comfortable 'ties in with abuse' he throws around terms which are totally unnecessary. After a month of leaving messages he has finally written me a referral to another GI at a totally different hospital.

I've been told about Remicade and I'd be willing to try it however I don't know if my problems are severe enough yet for it to be prescribed? I'm hoping to see my new GI within the next few weeks and will see what they say. Is there anything bridging the gap between these treatments or something for azathioprine users who do not agree with it?

This might sound a little self indulgent but I've tried with this and I'm increasingly disheartened because the rest of my life is in turmoil too at the moment. I'm losing my job at the end of the month (not easy to find new work in the current economic climate), was referred back to psych in January but can't get any support because they don't have a female therapist trained in my area of needs that is available... my eating habits are getting increasingly worrying and again that is doing nothing for my health. I feel if I had some hope of returning to feeling relatively normal things might start looking up a little. Thanks for hearing me out and thankyou in advance for any advice. :) Xxx
 
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maybe ask for methotrexate? see if that one can help, its doe wonders for me where all the drugs ending in "*****apine" or similar failed.

best wishes:)
 
hey natalie
i think kim had some really good advice--do some research and figure out whay YOU think is best. and then ask for it, and if your GI will not comply, then find one who is willing to work side by side with you. if you dont agree with what a doc wants to do, then go for second opinions. it is your care and youre allowed to make such demands.
its so important to be involved in your own care, but is so hard at the same time i know.
 

My Butt Hurts

Squeals-a-lot!
Sorry you're going through such a rough time lately.
Maybe this new GI will be just the thing you need. Do you have an appointment set up yet??
Hope you get to feeling better soon.
 
Thankyou everyone, I have looked at different options and I'm very much willing to try pretty much anything recommended. My current GI is one of those really stubborn people who like Kello says doesn't want to work alongside me. What his opinion is sticks and that's it. I agree however that I should be able to atleast have some input, hence why last appointment I said I wanted to see someone else.

Apparently the letter to the new GI only went off yesterday, I am in contact with the new team they actually offered me an appointment last week for the tuesday just gone, but obviously with them not having the letter still I couldn't take up that offer. They said they didn't anticipate it being too long before they could offer me another appointment slot.

It almost seems like as my health gets worse I feel the need to compensate for my pain by acting in irrational ways and doing irrational things to myself. I'm really sorry if that last sentence seems a little heavy. I've been dealing with other issues for about 6 years now. When the CD got bad I decided to seek therapy again but unfortunately it's not working out so well.
 
I thought I'd bump this, didn't really want to start a new topic! I have now seen a new GI and a specialist IBD nurse, both of whom are very nice. Also been assigned to a new dietician and am back on the Elemental diet. I lost quite a lot of weight again due to really poor food intake, it was quite rapid and so it seemed like a good idea and will hopefully also lessen symptoms. I started bleeding again. :(

Unfortunately due to being so unwell at this time, they have said I'm really not responding to the Azathioprine or Pentasa and have taken me off them, ready to move onto Infliximab and Methotrexate. So atleast something is happening there. The bad news is they want to investigate the worsening of symptoms, meaning another colonoscopy. Obviously I'm not over the moon about that but I don't really have a choice to not go through with it! Although I won't have to wait long for it and they said they will give me dates on Thursday when I go back. It scares me a little though because the previous times I have had a general and this won't be like that.

In others news I also have this weird lump on my lower left side, can feel it when I lie down, it's hard and moves around and my iron is bad again so going to my doctors to pick up a new supplement tomorrow.
 
ive had crohnes 15 yrs and never really talked to anyone about or even looked on any sites til 2day, i feel 4 u Nat as and i wish you the best. g.t Swindon, wilts
 
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