feel so sorry for dd

[troptriste]

Dd has a chronic health problem which has just begun a new flare.
She is 18 yrs old, has to cope with pain and uncertainty about her health, be on strong immune suppressants for life and is just about to do her repeat A levels as last year she missed so much schooling she could not get the grades.
She has been accepted onto a fantastic course for september and now, with two weeks to go till exams has started with a new phase of her illness.
I feel so sorry for her as well as a bit worried for the future

I'm really sorry your daughter has to go through this. Is it rheumatoid arthritis by any chance? If so i can empathise as my DH suffers from this.

My DH however manages to lead a full and active life (helped by modern medicine).

You sound like a lOvely mum though and your support will be the most important thing.

Have not got any words of wisdom or practical tips but hope your daughter does well. Good luck

thanks that's kind of you.
Its not RA but similar process
Its just so disappointing for her but we'll get there

So sorry your DD is going through such a rough spell. Can empathise as my DD started with ulcerative colitis at the same age. It was misdiagnosed as irritable bowel syndrome for 4 years. Also on immumo suppressants which she is really worried about taking and which have been making her feel sick. She got through uni (and got a 2:1 albeit with loads of extensions )and has been working for the last 2 years in quite a high stress job. She seems to cope and manages to enjoy life although she needs far more rest/sleep than she used to.

Will DD be able to re-sit her exams if she can't take them in a few weeks? Am sure the stress of exams won't have helped. It's so hard as a Mum to see your child suffer and have their lives blighted. You never stop worrying or wishing there was more you could do. My DD lives about 2 hours by car away so I can't pop over and do anything to help on a daily basis. If we lived nearer I could offer to cook, clean, shop or whatever.

I'm sure you will get there. It may just take longer. I hope DD starts to feel better soon. Hugs to you both.

tunaday thanks for your post
DD had severe colitis at age 14yrs initially thought to be indeterminate/poss UC but now diagnosed as crohns disease.
These are already her resits[ 3rd yr sixth form] but if she has to do another year we will cope its just a shame as she is looking forward to her course.
she is a bit better today.. may take her to OOH later though if still unwell.
keep in touch x

Glad DD bit better today trop. Have you decided whether to go to the OOH GPs? Does your dd get bad joint pain along with the bowel probs? When my dd's flares up she gets really painful back and knees to the point that she has had morphine patches and crutches in the past. It's good that your dd has a course she wants to go on. UC and Crohns make things harder but a good attitude from school/uni/employers makes work/study possible. How long has your dd been on immuno suppressants? Does she have any side effects problems? Mine has only been on them for about 5 weeks and has been feeling very sick about an hour after she takes them.

hi tuna, nice to hear about your dd but a shame she feels unwell with the immunosuppressants.
Is she on azathioprine.. dd used to be on this but her new consultant changed her to mercaptopurine which he says is much better tolerated.. she has been much better on this and takes them regularly. mercaptopurine is related to azathioprine.
She is managing milk shakes etc but feeling sick with tummy ache... have rung OOH spoken to triage nurse [ what a palaver lol] and waiting for GP OOH to call back.

Hi trop, yes dd is on azathioprine. Will def tell her about mercaptpurine. Glad your dd is able to take this without problems. It's incredible how so many flare ups seem to coincide with weekends/bank holidays. DD says most GPs don't have much idea what to do, having only come across a few cases of UC in their career. Her consultant seems good though. Are you happy with dd's new one? I hope the OOH gets back to you soon and is helpful. It would be wonderful to be able to wave a wand and take all the pain away for them.

OOH GP called home visit and she has got prednisolone for a week and I will speak to consultant tomorrow to get early clinic appt x

Glad OOH called back. Really hope the steroids do the trick. Does dd have a Crohn's 'nurse' who she/you can phone for advice? My dd has an UC nurse who seems to be really supportive and can change medication without having to see GP/consultant. DD can phone her any time which is pretty good. Hope your dd feels more comfortable v soon.

thanks tuna.. no there are none in our region unfortunately I think it would have helped a lot but anyway we have a plan for the next week or so fingers crossed x