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01-09-2017, 06:59 AM   #31
charlottem
 
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Wow... the UK health system and your health team seem really slow. We can get a colonoscopy and see a doctor same day or within a few days. Reading your posts makes me feel you should already be on a biologic. Good Luck.
Yeah unfortunately it is really slow . My dr did mention biologics actually so maybe depending on the colonoscopy results, i might go on one
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EDS, Mast cell problem, POTS, IBD, Pan Dysmotility

PEGJ Tube- using the jej part for feeding and the gastric port for draining.
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01-16-2017, 03:38 AM   #32
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Hi everyone. I had my colonoscopy yesterday which came back clear for inflammation but came back saying that I had Melanosis coli. I'm also waiting for biopsies as I need to see what's happening with my mast cell colitis. I'm also having my MRI on Wednesday! Thanks for all your support. At least if it's not crohns we can concentrate on the mast cell problems and dysmotility. But we've still got the upper gi tract which needs to be checked as biopsies have come back with crohns in the stomach
01-16-2017, 09:11 AM   #33
ronroush7
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Wish you the best.
01-18-2017, 11:03 AM   #34
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Hi there. Had an MRI today. Got an emergency appointment with my consultant tomorrow night because I'm draining so much from the gastric port. We will be discussing what to do next
01-20-2017, 01:09 PM   #35
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Well it was a terrible appointment. The dr had been harassed by my old consultant via email and is listening to her even though she is terrible (she threw a pen at me) and ive basically been discharged and told to find another consultant myself. Ive got mast cell colitis/enterocolitis so im going to see a mast cell specialist and then ive found a dr who specialises in how EDS and POTS can affect the motility of the bowel. Its going to be a long road ahead and im dreading it to be honest. In the meantime he thinks the morphine is causing the dysmotility to worsen so im going to go to the gp and ask for a pain patch next friday
01-20-2017, 01:11 PM   #36
ronroush7
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I am sorry for the way your old consultant treated you.

01-20-2017, 02:40 PM   #37
my little penguin
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Hope you find a better fit soon
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01-25-2017, 05:39 PM   #38
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Hiya! I saw my gp today and he was amazing! I've been put on fentanyl patches and prescribed sodium picosulphate to move my bowels. It's good to have someone who genuinely cares. He's amazing!
01-25-2017, 05:45 PM   #39
ronroush7
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Hiya! I saw my gp today and he was amazing! I've been put on fentanyl patches and prescribed sodium picosulphate to move my bowels. It's good to have someone who genuinely cares. He's amazing!
I am glad for you.

11-06-2017, 11:27 AM   #40
charlottem
 
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Well its been a long time since I updated (sorry)

I'm feeling so good at the moment its incredible. Finally, the motility is under control with new medications and IM FINALLY ON STEROIDS FOR MY IBD AFTER I FLARED BADLY AT THE END OF AUGUST. I will remain on the steroids until January so I would've been on them quite a while and we need to discuss whether I progress onto azathioprine. If anyone has any good maintenance meds for IBD I'd really appreciate it! I'm scared Im going to flare when I come off the steroids but I'll just have to wait and see I guess and hope for the best, luckily the elemental largely keeps me in remission!!
11-06-2017, 11:32 AM   #41
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Thanks for the update. Glad you are doing well.
11-06-2017, 01:30 PM   #42
my little penguin
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Keep in mind ibd meds take a while to become effective
So most start them when they start steriods
So when they wean the meds are working
Aza takes 3-5 months
11-06-2017, 01:34 PM   #43
my little penguin
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Remicade takes6 weeks
Humira 3-5 months
Mtx takes 8 weeks

Most ped GI will only use mtx in kids vs aza or 6-mp due to the higher lymphoma risk

Ds has tried them all
And is currently on Stelara mtx and ivig
11-06-2017, 01:43 PM   #44
charlottem
 
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Remicade takes6 weeks
Humira 3-5 months
Mtx takes 8 weeks

Most ped GI will only use mtx in kids vs aza or 6-mp due to the higher lymphoma risk

Ds has tried them all
And is currently on Stelara mtx and ivig
Hi there! thanks for this! i was wondering that actually about the whole taking a few months to work but I think where my GI is a new one he wanted to review everything before making a decision about azathioprine. I don't think I will need anything like humira or methotrexate because things aren't that bad- like my last colonoscopy was good as was my MRI- only at a microscopic level but I wasn't flaring then but I did flare badly in september and my calprotectin showed that and my ESR doubled too so thats why I went onto the steroids but as ive said my elemental helps a lot thankfully. For me the motility is probably the worst thing I deal with gastro wise rather than the IBD but I think whats worrying is how my IBD isnt really classified and my dad had this at my age and he ended up getting really sick but anyway Im rambling now! I'm just going to see what he says at the next appointment and hopefully it'll all work out. I'm keeping a symptom diary whilst im tapering and I definately noticed that when I reduced, I found I had like a tiny flare so I'm really worried when I come off completely but luckily i can schedule appointments quickly! Regarding the cancer risk, I am over 18 so I don't know if that changes things?
11-06-2017, 02:14 PM   #45
my little penguin
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methotrexate and aza are the same level of drug
Are both One tier below biologics
11-06-2017, 05:21 PM   #46
charlottem
 
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methotrexate and aza are the same level of drug
Are both One tier below biologics
Oh really thats very interesting. Maybe I can ask for a low dose of methotrexate then?
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