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Proctitis to Pan-colitis in two months!

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Ulcerative Colitis
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Flowermay45
Regular Member
Joined : Nov 2020
Posts : 20
Posted 12/18/2020 11:24 AM (GMT -7)
Writing this in somewhat disbelief!

Two months ago I diagnosed with Proctitis (20cm), I went on various treatments but they weren’t doing much, about a week ago I started to feel really unwell. Going to the loo a lot, awful stomach cramps, nausea, horrendous watery D. I felt so poorly on Tuesday I decided to go to A & E as the cramps were so severe. Lucky I did because i was severely dehydrated.

I’ve been in hospital for a few days and today had a scope, I’m so sad to say it’s turned into Pan-colitis.

I’ve been put on IV steroids to try and get things under control.

I guess I’m just looking for some positivity and hope that things will get better. Im feeling scared for my future, having it progress that much so fast has scared me so much.

Hope everyone is doing ok!

M xx
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 922
Posted 12/18/2020 12:58 PM (GMT -7)
I was diagnosed with pancolitis from the get-go. It took a while to find the right medication (many worked partially, so I spent 2 years with proctitis while we tried different things), but have been in remission now for about 18 months (knock on wood)
Also, the first flare is often the worst
Hang in there, it will get better.
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quincy
Elite Member
Joined : May 2003
Posts : 32560
Posted 12/18/2020 1:05 PM (GMT -7)
Flowers...wow. When you were diagnosed, did you have biopsies throughout...and do you have the pathology results?

I'm hoping that you've been checked for Covid, had stool samples and more biopsies for other possibilities such as invaders or microsopic colitis etc.

It's good you're in hospital now and under care. Ask lots of questions to know exactly what they're doing and results of any tests.

Please keep in touch...virtual hugs!
q
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Flowermay45
Regular Member
Joined : Nov 2020
Posts : 20
Posted 12/18/2020 2:08 PM (GMT -7)
Hey both!

I know I’m in shock, was scoped on the 8th November!

Trying to stay positive but just starting to worry about the what ifs sad I’m scared of things like toxic mega colon and having to get surgery potentially. Think I’m tired and just overwhelmed.

Thanks both for your advice, just taken my big hit of steroids hoping that helps!

m xx
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quincy
Elite Member
Joined : May 2003
Posts : 32560
Posted 12/18/2020 5:02 PM (GMT -7)
Understandable. Please keep us updated as to how you're doing.
q
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5455
Posted 12/18/2020 10:09 PM (GMT -7)
Watery D is more typical of norovirus than UC. It's possible that you got a viral bug after proctitis DX and it aggravated your auto-immune response so that UC progressed. Try to rest as much as you can and think positively. High-dose steroids will give you ups & downs + unneeded weight gain leading to "moonface" so the best medical practice is to wean you off them gradually, and onto another type of med that can control UC inflammation with fewer side effects. Patients already under medical care usually do not get toxic megacolon. / Old Hat (40 yrs with left-sided UC; in remission taking Colazal)
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 913
Posted 12/19/2020 9:07 AM (GMT -7)
I was in much the same boat. I went from 0 symptoms today raging in about 2 weeks and ended up in hospital for 20 days (mainly due to incompetence at 1st hospital so after 9 days I checked myself out and went to another one). I ended up extremely hopeless and depressed ( my wonderful GI at the time explained how what’s going on in our diseased gut can actually contribute to depression).

Now I’ve been in remission for over 3 1/2 years on entyvio. I didn’t want to have to be on a biologic but I’m glad now because I’m living a pretty normal life again. Point is to do your due diligence and be your own advocate. Be persistent with your meds and be sure to try rectals. I didn’t find this site soon enough to learn things that my drs never mentioned to me , like enemas.

Hang in there. It can be a bumpy road but there is a normal life at the end.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16194
Posted 12/19/2020 9:17 AM (GMT -7)
Sorry that's awful. Certainly do insist on strong meds like biologics to control your flare. Whatever you were treated with before was far too weak.
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Flowermay45
Regular Member
Joined : Nov 2020
Posts : 20
Posted 12/19/2020 10:39 AM (GMT -7)
Thanks so much both.

If this disease has taught me anything it’s expect the bloody unexpected.

After a few really low days of being upset and feeling pretty alone as can’t have visitors with Covid and the ward I’ve been placed on is a dementia ward as they have no space on the gastro ward for me at this time (hopefully moving today!)

I finally have an appetite and can eat without feeling really sick or crampy.

It’s the little things I am holding on too.

I am in discussions about biologics a discussion I thought was miles in my future but what can you do. I refuse to be negative and let this define me. Many go through so much worse.

Thanks so much for your support as always!
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