Hello

I was diagnosed in october last year after 15 months of symptoms - mainly pain and weight loss and then in august bleeding ++ which though frightening gave them more clues!
Prior to bleeds thought to be gallbladder and had every gastro test under the sun-nearly all twice..at one point had TWO ng tubes down!
Eventually diagnosis made by capsule endoscopy and started pred and liquid diet. Not started on azathioprine yet as still query as to whether I have a GIST tumour or lymphoma of small bowel. Much of my small bowel not seen by capsule as it got delayed in one portion for several hours...therefore extent of disease not clear and also where I have had my impressive bleeds not seen.

If I improve on pred I will not have to have further investigations to biopsy some nodules seen on small bowel by capsule, and maintenance therapy will be started. All will become clear on jan 10th...

Im sorry for your Dx and situation with meds. Im not even close in your situation however I do attend university and work in a public place and Un the last year of being on azathioprine have only been sick twice and once with a nasty flu and once with a cold and both were gone in reasinable amounts of time. Good luck and welcome to the forums!

Hi littlemissh,
I am also on a fluid diet only(Ensure right now as I wait for Vivonex), but only for ten days so far. I really don't mind not eating, but it does seem to bother others. They question why I can't have a little bit of soup or pudding or smoothies. I just reply that I know that they are trying to help, but that I really do know what I am allowed to have and not to have and that they needn't worry about me not eating while they do; it won't bother me. Then I just try to have the attitude that strangers can wonder all they want, if they they knew my story, they wouldn't be so judgemental. So, I try not to judge the strangers for their comments and their funny looks. This makes me feel a lot better about being in public and not eating when others do.

You've been through a lot. Let go of the judgements of others. Just focus on what will help you to heal.

Started back on phased re-introduction of solid foods just before christmas but dropped pred to 15mg as well and all gone wrong.

The small amount of weight I had put on with pred and liquid diet(1.5kg - lost 20kg before diagnosis down to 94lbs from 65kg (143lbs)) has been lost again. My hb has dropped again as well though not so low i need more blood I hope.

I really hope this does not mean I have to go through the biopsy route - I've had enough prodding and poking to last me a lifetime. Will find out on monday. :-(

littlemissh,
I do hope that things turn around for you soon. It is hard to do anything when a person has that much weight loss in such a short time. It robs you of your energy and the ability to think clearly and the ability to do the things that you want to do. Not to mention the anxiety and worry...
May you soon have the answers that you need to set you on a path of healing and wellness again.
Let us know what happens on Monday.

Thanks Happy, monday seems like forever away but will let you know. I am at least feeling a bit better beecause I made the decision to up my steroid dose again, so I hope he's not mad with me. I don't think so as he's a really nice guy and been worried about my blood count and weight.
Will let you know what happens.

Seen my consultant today who has decided to start me on azathioprine and stay on high dose pred also.
If I respond well I will have a repeat pillcam so the whole small bowel can be evaluated, if little or no improvement I will have to have the double balloon enteroscopy so that biopsies can be taken.
He says that I should note some improvement in 2-4 weeks with aza because the thing that slows down response to azathioprine is your fat stores..of which I have none..at least there is one positive thing about being a skinny stick insect.
He has said an absolute 'no' to work for at least another 1-2 months due to the fact I will be exposed to all sorts of nasty infections in my job. I will need to be on a lower dose of pred before I return...not happy about that but not sure I could work effectively and I don't really want to end up with serious infections as well!!
Sorry for the ramble. Fingers crossed.

Hiya littlemiss
and welcome

Now it's time to rest and let the Pred do it's magic on you! Watch rubbish daytime TV!
Don't even think about work! I was off work for 6 months last year with an infection. You certainly DON'T want one of them!
Good luck with the Pred, it healed me nicely. Hope the Aza kicks in soon too!
lotsa luv
Joan xxx

Thanks Joan,
I can't quite get used to not being at work - been off since october and keep thinking..perhaps next month.. Just told work the news and they were so kind about it, they just want me to be better even though they are horrendously busy at this time of year and a particularly bad year at that.
They want me back to my old self as the works Jester rather than the person I am now.

They made me feel less guilty so perhaps will get out my Life dvd's and a bit of daniel craig and settle down with a bottle of resource energy...chocolate flavour I think!.

littlemissh,
I am glad that you have been given another treatment to help you. Do rest up and let go of any guilt about not working. You are not slacking off- you have a different job now- getting your body well.
I have been on a liquid diet for almost 5 weeks now. I couldn't handle the Ensure- now I'm on Vivonex Plus (an unflavoured full elemental diet). I wasn't expecting to be on it this long; so due to living in a small community and the holiday season, I couldn't get the next batch in time. I was only managing about 600 calories worth, but I had to cut down from this for several days to make it last until the new shipment arrived. I was feeling a lot better on it, but now I am dehydrated, have low blood sugar and get faint easily, from having to cut down. The new shipment came and now I am trying to gradually get up to 900 calories worth. I am not able to do what I was (which wasn't a lot!) and it is so frustrating. I know that I just have to give it more time and rest, so that I heal. So, I understand your predicament littlemissh. May we both be feeling better soon!

Thanks happy,
Sounds like you have been having a rough time of it but hopefully things will improve for you now that you havevyour new supplies. I bet your garage looks like a storage depot- mine does. Hopefully you can increase your intake orally. If not there's always ng feeding-I had this for a few weeks last year-although not the nicest thing it stopped my weight dropping when I just couldn't eat/drink.

By the way , I have a new motto ' when I feel better not if'.

littlemissh,
I think that I am a long way from an NG tube as I am overweight. (Not for much longer though, I think.) I did manage to get 750 calories in today. But the threat of an NG tube will motivate me to try even harder to get up to 900. Then I will have some energy again. I am lucky that I started this bad time with some extra weight because I would be a lot worse off now if I had started at a normal weight.
I like your new motto. I tend to use the 'if' word when I am making plans so that I don't disappoint myself or others.