Crohn's Disease Forum » Your Story » Charlotte's Updates


 
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
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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
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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
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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?
01-05-2018, 11:31 AM   #47
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Hello everyone

Was wondering if I could have some advice really as I am due to see my specialist soon and I need some advice.

So I am on steroids atm and I am decreasing my dose... I felt great at the top dose and symptoms were greatly reduced.. now I am reducing I am getting symptoms again and I have passed blood a couple of times and also on a couple of occasions I have passed something very strange.. basically looked like a piece of disected liver/bowel (I do biology so I am very aware of what organs look like... I have disected stuff including a whole rat) . Funnily enough my dads family pretty much all have bowel problems- my great great grandmother had colitis, great grandmother had inflammation, grandmother has had inflammation, uncle tested for crohns, other uncle has undiagnosed problems and then we get to my dad.... he almost died because of IBD because noone took him seriously and his bowel became ischemic and burst. My dad told me he passes these odd things too. Problem is with my dad they biopsied his resected bowel but noone knows what IBD he has... like me.... so I can only presume we have a weird subtype that isnt really documented as such... anyway... I need to know if theres any advice on meds because although further up on the thread we have talked about azathioprine/imuran the problem is that tends to be only given for crohns in the UK and as I havent officially got that diagnosis theyre not particularly keen in starting that... I haven't asked about methotrexate so I might do that but is there anything else??! my specialist is saying we do not need to start biologics atm and to leave them in case I do need to start them and I agree with that as I have witnessed a friend who has run out of options. I also am considering bringing up staying on steroids long term which I know is not ideal but I think it buys me more time to consider long term options.... my local gastro is happy to go with whatever my specialist says but he said that the steroid i am on is the best for microscopic inflammation which is great but I have also had multiple ulcers. The other thing to consider is that my stomach has shown inflammation and considering the steroid is targetted for the ileum and colon then it wont help so maybe it would be better to go on something like azathioprine or methotrexate...... gosh this is a minefield
01-05-2018, 12:15 PM   #48
my little penguin
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Steriods can cause life threatening issues of used long term including adrenal insufficiency.
Saving biologics is great except this can mean you are left on steriods which isnít an option
Since you donít have a ibd dx - biologics and immunosuppressants would be out
Do scopes not show damage or biopsies
Is there a reason they havenít given an ibd dx
Do you have an egids dx ?
Eosinophilic gastrointestinal Disease dx such as EoE /egdor Ec ?
These respond to steriods
But are treated differently than ibd
Eosinophilic colitis (EC). can use some immunosuppressants
01-05-2018, 01:02 PM   #49
charlottem
 
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Steriods can cause life threatening issues of used long term including adrenal insufficiency.
Saving biologics is great except this can mean you are left on steriods which isnít an option
Since you donít have a ibd dx - biologics and immunosuppressants would be out
Do scopes not show damage or biopsies
Is there a reason they havenít given an ibd dx
Do you have an egids dx ?
Eosinophilic gastrointestinal Disease dx such as EoE /egdor Ec ?
These respond to steriods
But are treated differently than ibd
Eosinophilic colitis (EC). can use some immunosuppressants
I have an inflammation diagnosis... its just not known whether its crohns. I've been diagnosed with mastocytic enterocolitis but its unresponsive to the normal treatment with mast cell stabilisers... in fact the mast cell numbers have actually increased. But where it gets complicated is that macroscopically I have had multiple ulcers in the stomach, duodenum and ileum. Biopsies have showed moderate inflammation with abscesses and stuff like that... I can dig out the official report.. give me 2 mins and ill copy and paste. But i havent had a granuloma so no crohns diagnosis. But as I said this happened to my dad and he ended up almost dying because noone took him seriously and as I said even when they biopsied his bowel it was indeterminate so theres obviously something genetic considering my entire dads side of the family have bowel inflammation of some description. also my dads inflammation is the exact same place as mine and started at the exact same age... I dont believe in coincidence.

They have said about next stage is immunosuppressants if I flare after steroids which I wouldnt say Im flaring but Im getting there... but we are all hoping the elemental will keep things in remission because I use that for my motility problems and I am fed jejunally.
01-05-2018, 01:04 PM   #50
charlottem
 
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Steriods can cause life threatening issues of used long term including adrenal insufficiency.
Saving biologics is great except this can mean you are left on steriods which isnít an option
Since you donít have a ibd dx - biologics and immunosuppressants would be out
Do scopes not show damage or biopsies
Is there a reason they havenít given an ibd dx
Do you have an egids dx ?
Eosinophilic gastrointestinal Disease dx such as EoE /egdor Ec ?
These respond to steriods
But are treated differently than ibd
Eosinophilic colitis (EC). can use some immunosuppressants
Small bowel: There is patchy mild acute inflammation

Ileum: Fragment of granulation tissue. Shows an area of active chronic inflammation with ulceration. There is patchy mild-moderate inflammation.

Colon: focal cryptitis

comments: features are those of a patchy mildly active ileocolitis. The appearences are non-specific

Gastric: focal mild increase in inflammatory cells within the lamina propia with occasional intraepithlial neutrophils and a single crypt abscess. The features are those of a focal active chronic gastritis suggestive of upper GI tract involvment by crohns disease

Mast cell numbers are also high
01-21-2018, 07:26 AM   #51
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So a quick update...

I had some bloods done not too long ago.. good news and bad news

good news- My haemoglobin has increased by a large amount because im actually being treated and the steroids had helped reduce bleeding

bad news- because now im off the steroids I am not absorbing my potassium supplement and my feed because i think im in the early stages of a flare.. my WBC is also a bit high for me...

off to the consultant tomorrow to discuss what to do because i feel awful... i had forgotten how bad I felt before steroid!
01-21-2018, 08:52 AM   #52
ronroush7
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So a quick update...

I had some bloods done not too long ago.. good news and bad news

good news- My haemoglobin has increased by a large amount because im actually being treated and the steroids had helped reduce bleeding

bad news- because now im off the steroids I am not absorbing my potassium supplement and my feed because i think im in the early stages of a flare.. my WBC is also a bit high for me...

off to the consultant tomorrow to discuss what to do because i feel awful... i had forgotten how bad I felt before steroid!
Sending support.

01-24-2018, 08:04 AM   #53
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Back on steroids till June

If i need to increase them then I can

Will be discussing long term things in june im guessing
02-02-2018, 06:08 AM   #54
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Keep fighting! I live in Brazil and had a lot of trips to Hospital. Eventually things will get better.

Fatigue, at least to me, comes and goes.
03-27-2018, 01:58 PM   #55
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I don't know if anyone is still following this but I thought I'd post an update anyways

Had my tube change and that went well

My consultant is supposedly going to move me on to azathioprine because im steroid dependent and then i will wean off steroids gradually

I need the TMPT blood test first and awaiting a clinic appointment

Im really angry as found evidence from 3 YEARS ago that I had crohns so gonna give the biopsies to him when i see my consultant as 3 SEPARATE HOSPITALS have all said I have IBD and crohns so im prety pissed off actually

and im flaring at the moment so steroids have increased which have made things better and ive also put on weight thankfully
03-27-2018, 02:02 PM   #56
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I hope you feel better soon, Charlotte.
04-25-2018, 05:39 AM   #57
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Started azathioprine today and remaining on steroids until the summer and then hopefully I will be able to come off the steroids after what will be almost a year
04-25-2018, 08:13 AM   #58
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I hope the steroids and azathioprine work. Sending support and prayers.
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