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Crohn's Disease Forum » Ulcerative Colitis Forum » Ulcerative Proctitis Support Group


 
11-05-2014, 01:24 AM   #1
Cross-stitch gal
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Ulcerative Proctitis Support Group

About this Support Group

This group is for those who have been diagnosed with Ulcerative Proctitis. It's not only to give support, but to share information from past experiences.

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Last edited by Cross-stitch gal; 11-05-2014 at 01:47 AM.
11-05-2014, 04:50 AM   #2
Cross-stitch gal
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Many of those who are being diagnosed with ulcerative proctitis also have been diagnosed with other types of IBD as well.
11-05-2014, 06:32 AM   #3
2thFairy
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Ulcerative proctitis is the same thing as ulcerative colitis or Crohn's colitis, it just denotes the location.
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11-05-2014, 09:33 AM   #4
scottsma
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I was diagnosed in 2006 but after a colonoscopy recently,it seems I now have inflammation in my splenic flexure.I have an appt.later this month at the G,I, clinic.
11-05-2014, 10:53 PM   #5
Cross-stitch gal
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2thFairy is right. I've explained it in different words though. I hope your appt goes well scottsma and they can get you taken care of.
11-06-2014, 09:29 PM   #6
my little penguin
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DS has/had proctitis as part of his Crohn's since the rectum had inflammation as well as other areas up the Gi tract . He also has/had rectal prolapse from so much inflammation
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11-07-2014, 05:26 PM   #7
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Oh penguin!!! I'm so sorry. How's he doing now?
11-07-2014, 05:47 PM   #8
my little penguin
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He rectum is fine for the most part .
Once he got on remicAde .
Got worse later on Humira then added lots of suppositoires creams plus vsl#3 DS.
And increased humira to 40 mg and the inflammation went down.
He stays on daily miralax to keep things always soft to not irritate the prolapse .
We found though trial an error if he goes more than two days without a BM or has very formed stool his prolapse gets worse then the Crohn's acts up which makes the Crohn's worse and then we are in a vicious cycle .
11-10-2014, 03:08 PM   #9
Cross-stitch gal
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Glad that his rectum is fine for the most part. Sounds pretty nasty having to take miralax that often though. I don't do well having to take it for my colonoscopies as it is. Glad that you've found something that works though.
11-10-2014, 09:27 PM   #10
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I have Mild Proctitis so slightly different I guess. Had follow up with GI and been put onto something called Asacol, I think?

Interestingly he told me as mine is mild, I may find I rarely get any symptoms at all, just occasionally, if that
11-10-2014, 10:57 PM   #11
2thFairy
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I have Mild Proctitis so slightly different I guess. Had follow up with GI and been put onto something called Asacol, I think?

Interestingly he told me as mine is mild, I may find I rarely get any symptoms at all, just occasionally, if that
Nope, not different. You are suffering and it sucks. I hope you will find relief with the Asacol. Many people here have done well with it for their proctitis.
11-10-2014, 11:14 PM   #12
RickUK
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Nope, not different. You are suffering and it sucks. I hope you will find relief with the Asacol. Many people here have done well with it for their proctitis.
Thank you. I was surprised to hear simply Proctitis (aswell as UP) are a type of IBD. I have always thought UC and crohns were the only 2.

I am grateful it is mild, and my symptoms are nowhere near severe as some I have read. Food doesn't seem to affect me, If i remember correctly my GI said the main thing is avoid constipation...interesting

EDIT: Am annoyed however that my biopsy results could take 2months
11-11-2014, 03:35 AM   #13
Cross-stitch gal
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I was on Asacol for a few years until I was told that it wasn't working for me anymore. I believe that UP is classed with UC. I hadn't heard of it either till last year 2013 when my GI diagnosed me with it. However, I thought it was interesting that last week when I had my colonoscopy my doctor made no mention of my having UP.

Glad to hear that yours is mild. Hopefully you'll be able to stay that way for awhile!
11-11-2014, 08:57 AM   #14
RickUK
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I was on Asacol for a few years until I was told that it wasn't working for me anymore. I believe that UP is classed with UC. I hadn't heard of it either till last year 2013 when my GI diagnosed me with it. However, I thought it was interesting that last week when I had my colonoscopy my doctor made no mention of my having UP.

Glad to hear that yours is mild. Hopefully you'll be able to stay that way for awhile!
Fingers crossed. I don't know if mine is ulcerative Proctitis yet as no biopsy results are back. Doubtful with it being so mild and none of the severe symptoms I have seen some have. (apart from mucus). But that is interesting they didnt pick it up last week
11-11-2014, 09:14 AM   #15
scottsma
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Rick........are you on tablets or suppositories ?
11-11-2014, 02:43 PM   #16
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Rick........are you on tablets or suppositories ?
Got to go back Thursday to pick them up, but I am pretty certain the gastroenterologist said they're tablets
11-11-2014, 03:55 PM   #17
Cross-stitch gal
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Got to go back Thursday to pick them up, but I am pretty certain the gastroenterologist said they're tablets


Depending on how your UP is, you may eventually need both tablets and suppositories. I use both. But, since last week I've just been using the pentasa and not the canasa.
11-24-2014, 05:11 AM   #18
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It's been a bit quiet on here lately. How's everyone doing?
11-24-2014, 08:52 AM   #19
scottsma
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Hiya,thanks for asking.Not much happening for me,compared with some.I had an apt for this coming Friday at the G.I.clinic and guess what,it's been postponed until 18th Dec.
I was writing a list of new symptoms which have appeared since my last visit.Hope I don't have to add to it by then.I feel I have a touch of cystitis coming on.I'll give it a day or two then I might need anti-biotics.I had my flu and pneumonia jabs last month too.I hope you're keeping warm and well.
12-02-2014, 08:52 PM   #20
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TMI post ahead...just a warning...haha!


Hi! I was diagnosed with ulcerative proctitis in 2012 and have some pretty annoying symptoms. I sometimes wonder if it's progressed into full blown colitis. I see my doctor regularly but honestly, as honest as I am in telling her how crap I feel, she seems to just write it all down and send me for blood tests (and nothing comes from them by the way) and really doesn't seem too surprised! It's a little frustrating to say the least! Anyone else have some pretty nasty symptoms? I'll give you my top ones:

1. GAS!! Sometimes so much so my stomach hurts so bad I can hardly stand up straight. I have variations of gas every day, most days my colon makes horrible noises and I always have some sorta discomfort in that area. (Belly, and colon-ish area lol)

2. Frequent bowl movements (I can deal with that one)

3. Fatigue. Big time! I'm always mentioning this because I'm tired all the time. She's sent me for blood tests and everything always comes back fine.

Most recent troubling symptom? After going for a bowel movement one day, I looked in the toilet, and to my surprise there was this huge glob of mucous. Looked like an alien baby. I almost died. I took pictures and showed anyone that would look at it...lol! My mom thinks I should go back to the doctor but I already see her every 6 months and I was there not that long ago.

Gah! This disease is a pain in the ass. :P
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12-02-2014, 09:53 PM   #21
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Yeah, gas is one thing I could live without. However as bad as it sounds, sometimes at the right time and right place it could be appreciated!

I too get a bit of mucus, however I'd rather deal with the mucus than the blood. I've asked my GI about it and he hasn't been too worried. As long as there's no blood mixed in, it seems like you're alright. One thing I've been told before is that mucus could be a sign that your body is trying to heal itself.
12-08-2014, 03:33 AM   #22
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Josh [ almost 14 ] has had crohns since 2009, he has it in his large and small bowel. In September he was diagnosed with proctitis as well when his symptoms flared up badly. He was in hospital for 7 days prior to this.
He was prescribed Salofalk [Mesalazine] 2g per day, which initially worked really well and his symptoms decreased. After 6 weeks we were told to go to 1g per day. Since then all the symptoms have returned. He has urgent need to open his bowels endlessly and getting severe stomach pain and increasing tiredness.

We increased the Salofalk back to 2 g, but it seems to be no longer working as the symptoms are getting worse. I have tried endlessly to contact the hospital to get him seen or at least to have a chat to find out the next step, but no one will get back to me. We had the same problem in September, which is why he ended up being admitted, and I really don't want that to happen now this close to Christmas.

I don't really know what they answers can be, but does anyone know what the next step is after Salofalk? What can we do to help ease these symptoms? It is so hard on Josh, he is missing so much school and having any sort of social life. This is just restricting anything that he wants to do.
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12-08-2014, 05:20 AM   #23
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This is just a suggestion as I might not be giving you the right advice. If you cannot get any satisfaction from the hospital go to your GP and ask if your son can have a prescription for Loperamide,This is very useful for slowing the digestion and therefore alleviating the urgency.I have had repeat scripts for over 8 yrs and it works for me.But as your son is young it may be prescribed only as a temporary solution until you get a hospital appt.Christmas is not a good time to be poorly when you're young.
12-08-2014, 05:39 AM   #24
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Welcome CDJ! I'm afraid that I have no advice. But, can say that I hope that your son will get the treatment he needs. We're here if you need to talk.
12-08-2014, 06:51 AM   #25
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There are other meds to try, such as Humira and Remicade. A short course of prednisone might help in the meantime. I would at least ask for some prednisone from your GP while you are waiting to be seen at the hospital. Like scottsma said, loperamide could help slow things down. Potatoes (mashed, baked, crisps) help thicken things up as well, though that won't help the pain.

Welcome to the forum. I hope he will find some relief quickly.
12-08-2014, 07:51 AM   #26
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Thank you for all the responses. We have seen the GP this morning and though she is very understanding she won't prescribe anything for Josh until she hears from the consultant.
Like me, she can't understand why they won't reply to concerns. She will be contacting the consultant direct to ask that they see Josh to try to get this sorted. I am hoping that this will speed things up!
We are getting beyond desperate for help at the moment.
12-10-2014, 01:51 AM   #27
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Finally got a call from the hospital and they are going to put Josh on steroids to try to get this under control. Not ideal as I was hoping to avoid the steroids again, but as this is his second flare in 3 months we really need to get this sorted as he is just getting worse at the moment.
They are going to look at putting him on different medication too, though not sure what at the moment.
12-10-2014, 02:39 AM   #28
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Thanks for the update. Hopefully you guys can find something to get Josh under control...
12-10-2014, 07:04 AM   #29
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Yea! Glad you are getting some action from the doctors!
01-01-2015, 10:15 AM   #30
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Hi all and Happy New Year.....Just a real quick update.
Had apt with GI on 18th Dec.He said my large bowel was pretty clear.I gave him a list of my symptoms starting with worst/regular,down to occasional. Although my colonoscopy in September indicated inflammation around my splenic flexure,the GI said he thought I had IBS,but wanted a calpro test.His secretary rang yesterday to tell me my result levels are 300.He wants me on the dreaded steroids (not happy)and an MRI scan.I'm going to collect my script tomorrow......Any thoughts ?
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