06-30-2018, 02:54 AM   #1
Fliss
 
Join Date: Apr 2018
Location: Lincolnshire, United Kingdom

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Finally diagnosed

Hi all.
Thanks for previous support offered by everyone.
I have received my diagnosis, I have lymphocytic colitis.
I have started a three month course of steroids , Iím hoping it will help me.
I have a few questions due to limited info published.
Has anyone here had microscopic colitis for a long time? How have you managed to stay in remission? Iím trying to understand how common reoccurring flares are with this disease really. Also looking for as much info as possible.
I have also received a diagnosis of Ehlers Danlos syndrome, so Iím just getting to grips with that.
Anyone experiencing both?
Feel like Iím falling apart, but Iím also glad I donít have to feel like a hypochondriac now!
Thanks fliss
06-30-2018, 04:13 PM   #2
Vfc28
 
Join Date: Jun 2018
Location: Liverpool, United Kingdom

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Hi all.
Thanks for previous support offered by everyone.
I have received my diagnosis, I have lymphocytic colitis.
I have started a three month course of steroids , Iím hoping it will help me.


Hi
I have just been diagnosed with microscopic colitis and been on
I have a few questions due to limited info published.
Has anyone here had microscopic colitis for a long time? How have you managed to stay in remission? Iím trying to understand how common reoccurring flares are with this disease really. Also looking for as much info as possible.
I have also received a diagnosis of Ehlers Danlos syndrome, so Iím just getting to grips with that.
Anyone experiencing both?
Feel like Iím falling apart, but Iím also glad I donít have to feel like a hypochondriac now!
Thanks fliss

Hi Floss
I have just been diagnosed with microscopic colitis a month ago after been extremely Ill since February. I'm now on budesonide and the Dr sent some more medication to the chemist today. I'm putting weight on again but I'm still not right.really hope thinks get better soon and for you too
From Vicky
07-01-2018, 06:44 AM   #3
Fliss
 
Join Date: Apr 2018
Location: Lincolnshire, United Kingdom

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Nice to hear from you Vicky.

Iím sorry youíre not feeling any better. Have you had any support from your dr? Other than the pills.
They are the same steroids I have just started. Iím slightly anxious about possible weight gain, so Iím hoping it wonít be a significant amount!
Itís frustrating how little information there is out there, isnít it!
Fliss
07-01-2018, 06:53 AM   #4
Vfc28
 
Join Date: Jun 2018
Location: Liverpool, United Kingdom

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Nice to hear from you Vicky.

Iím sorry youíre not feeling any better. Have you had any support from your dr? Other than the pills.
They are the same steroids I have just started. Iím slightly anxious about possible weight gain, so Iím hoping it wonít be a significant amount!
Itís frustrating how little information there is out there, isnít it!
Fliss

Hi Fliss,
I only put on weight because I haven't been able to eat much and I had diarrhea up to 25 times a day, so I ended up going down to 7 stone 5.I think I'm back to 8 now. The Dr says that budesonide doesn't make you gain extra weight. I'm back at the consultant on Wednesday. At least, like me, you have an answer now and hopefully be on the road to recovery. I have found if I stick to very plain food like bread cheese tuna potato yogurt etc and not too much of it either I'm not too bad. I'm still scared of going back to how I was a month ago. I'm down to 2 tablets a day from initially having 3 so I'm hoping it will be ok. How many are you taking ?
From Vicky x
07-01-2018, 09:17 AM   #5
Fliss
 
Join Date: Apr 2018
Location: Lincolnshire, United Kingdom

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Phew thanks for that reassurance!
Iím exactly the same! I think I actually went down to the same weight as you, Iím around 7,12 now, still not back to my original but not far off. My constant diarrhoea started in January, itís been a long six months!
Will this be your first consult appointment since your diagnosis? I havenít seen my consultant yet, I just got the results and prescription in the post. I think they said I will have an appointment in the next eight weeks, but no date yet.
Iím taking three a day for eight weeks then go down to two for six then one for four weeks. I only started taking them Friday so nothing new yet.
I will try and stick to plain foods, thank you. I like my spices too much !
Fliss x
07-01-2018, 11:32 AM   #6
Vfc28
 
Join Date: Jun 2018
Location: Liverpool, United Kingdom

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Phew thanks for that reassurance!
Iím exactly the same! I think I actually went down to the same weight as you, Iím around 7,12 now, still not back to my original but not far off. My constant diarrhoea started in January, itís been a long six months!
Will this be your first consult appointment since your diagnosis? I havenít seen my consultant yet, I just got the results and prescription in the post. I think they said I will have an appointment in the next eight weeks, but no date yet.
Iím taking three a day for eight weeks then go down to two for six then one for four weeks. I only started taking them Friday so nothing new yet.
I will try and stick to plain foods, thank you. I like my spices too much !
Fliss x

Hello again Fliss
Budesonide took at least 21 days to have any effect. I'm doing 3 for a month 2 for a month then 1. I'm a little scared about dropping down. I had my colonoscopy then 2 weeks later i saw the consultant. He then said I needed a CT scan. I was so ill that they needed to check everything that way too. I had that 10 days ago and I go back again on Wednesday to see consultant. My own Dr had a prescription sent to him from the hospital and they sent me anti diarrhea medication as well. I'm also on folic acid and iron supplement. I think different areas and countries must have different ways of seeing patients after procedures. Are you in UK?
Did your symptoms come on suddenly or had you had previous problems when you were younger. Mine happened literally one afternoon out of the blue in February. I don't think anyone could understand how dreadful it makes you feel. Hope you have had support and help, I'm a single parent but my son is 14 so luckily he is old enough to take care of himself.
I too like spices and before last weekend because I started to feel better I did a mildly peppered sliced steak with rice and veg and I was back to where I had been a few weeks before. I now don't risk anything other than very ordinary food. No more Indian food xx
Vicky
07-02-2018, 06:24 AM   #7
Fliss
 
Join Date: Apr 2018
Location: Lincolnshire, United Kingdom

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Hi Vicky,
Did you talk to your dr about chicken pox? Iíve had my bloods taken today and canít go back to work until the results show if Iím immune or not. Like you say I probably am... fingers crossed!
Yeah Iím in the uk too. Sounds like your consultant is good?
Iíve been diagnosed with IBS for about ten years but In January my symptoms were sudden. It took them a long time to understand it wasnít IBS and do some more tests!
Your right itís hard to live with!
Have you had any side effects from the Budesonide? Iíve had a cracking headache since Iíve started taking them.
My hubby is really good but I think itís difficult to understand if youíve not experienced it! Itís nice to talk to someone in the same boat.
Plain food diet here I come 😭
Fliss x
07-02-2018, 05:00 PM   #8
Vfc28
 
Join Date: Jun 2018
Location: Liverpool, United Kingdom

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Hi Vicky,
Did you talk to your dr about chicken pox? Iíve had my bloods taken today and canít go back to work until the results show if Iím immune or not. Like you say I probably am... fingers crossed!
Yeah Iím in the uk too. Sounds like your consultant is good?
Iíve been diagnosed with IBS for about ten years but In January my symptoms were sudden. It took them a long time to understand it wasnít IBS and do some more tests!
Your right itís hard to live with!
Have you had any side effects from the Budesonide? Iíve had a cracking headache since Iíve started taking them.
My hubby is really good but I think itís difficult to understand if youíve not experienced it! Itís nice to talk to someone in the same boat.
Plain food diet here I come 😭
Fliss x

Hi Fliss
DR DIDN'T seem too concerned to be honest. I asked him but he didn't say anything bad. I'd gone with yet another problem and got more medication.im just going to make sure I keep away from anyone who looks sick haha
I go back to hospital on Wednesday. Yes definitely good to know others have same issues and you're not alone. Nice to have someone to talk to. I tried a Facebook group but they didn't respond to my questions so I gave up and came here and I've met a few people with similar problems
Hope you're ok today
Vicky xx
07-03-2018, 04:37 AM   #9
Fliss
 
Join Date: Apr 2018
Location: Lincolnshire, United Kingdom

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Hi Vicky
Oh thatís good. Yes stay away from the contagious 😂
Yes this site is amazing, Iím so glad I found it, thereís so much information to take into consideration.
I think the steroids are taking it out of me, Iím pretty sensitive to medications so I feel like Iíve been hit by a bus. Iím glad Iíve had these few days to adapt!
How you feeling? Hopefully youíll get some support from the consultant tomorrow, youíll have to let us know how it goes.
Fliss x
07-29-2018, 10:56 AM   #10
Vfc28
 
Join Date: Jun 2018
Location: Liverpool, United Kingdom

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Hi Fliss
Haven't been in here for ages, not been able to access the site but it's worked now. Hope you are feeling ok and the tablets are working for you.
I'm on month 3 now and I've just reduced to 1 tablet a day. 3 days in and my symptoms are returning after 5 weeks of feeling well again. I'm going back to the Dr for more budesonide and I've upped my dose back to 2 tablets in the morning. I know you're on the same medication so wanted you to be aware for when you drop your dosage. Id managed to get back to 8 stone and don't want to go lower again. Let me know how you get on.
Vicky xx
07-30-2018, 01:47 PM   #11
Fliss
 
Join Date: Apr 2018
Location: Lincolnshire, United Kingdom

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Hi Vicky, yes Iíve had a few issues getting logged in too.
Oh really! How long are you going to be on two for now?
My symptoms have started to ease but still have the constant stomach ache. Have you noticed any improvement in your pain?
Fliss x
07-30-2018, 03:01 PM   #12
Vfc28
 
Join Date: Jun 2018
Location: Liverpool, United Kingdom

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Hi Fliss
Don't know if my reply sent so I'll reply again just in case. I was on 9mg ( 3 tablets) for a month then 6 mg (2) for a month then last Wed or Thurs i went down to 3 mg (1) and after a couple of days i started to get signs/ symptoms, bit of diarrhoea, gushing and gurgling inside. Id been doing well, after 3/4 weeks of tablets i had less diarrhoea the gushing gurgling sounds went and no cramp pain. I was at the point where I could go back to work and go to the shops without worrying about being in a car for 20 minutes. Ive gone back on 6 mg yesterday and going to go to GP tomorrow and ask for more tablets. The consultant said that the course may need to be repeated before symptoms subside. I can't go back to bring as ill as I was.
How's things with you?
Vicky xx
07-31-2018, 01:06 PM   #13
Fliss
 
Join Date: Apr 2018
Location: Lincolnshire, United Kingdom

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Hi Vicky,
Thatís stressful, isnít it awful having to constantly worry about toilets!
Iím glad your getting back to a better place, I hope you wonít have to be on them for too long.
Iím still on 9mg , I them for six weeks, then go down to 6mg. I think I have two weeks left on 9mg.
I havenít had too much of an issue with diarrhoea since starting 9mg, but my stomach is still painful, like a dull ache all the time. Iím still waiting for a follow up with the consultant.
Fliss x
08-01-2018, 01:10 PM   #14
Vfc28
 
Join Date: Jun 2018
Location: Liverpool, United Kingdom

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Hi,
I've got a prescription for more budesonide and I took 9 mg this morning. I've actually been ok today and was able to go out without panicking haha. Hope you've had a good day.
Vicky xx
08-06-2018, 11:49 AM   #15
Fliss
 
Join Date: Apr 2018
Location: Lincolnshire, United Kingdom

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Hi,
Thatís great news!
Iím waiting for my follow up, phoned the hospital today but they are having delays 😩 I havenít spoken to any medical professional since my diagnosis, itís all been via letters. So Iím feeling a bit frustrated
Fliss x
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