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


 
01-01-2015, 02:08 PM   #31
7vNH
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Have you tried a rectal mesalamine enema? Some folks just can't get results from oral mesalamine and get quick results putting the mesalamine were the problem is. I'd do that before steroids...much lower chances of side-effects.
01-01-2015, 05:15 PM   #32
Cross-stitch gal
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7vNH, sometimes we do try different things and they don't work. Steriods aren't one that any of us like to mess with. But, sometimes they are neccessary. However, sadly there are doctors who will give them out like candy each time we flare. I just hope no matter what that each one of us who does end up in a flare can get treatment in order to feel back to themselves.
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01-02-2015, 09:52 AM   #33
scottsma
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Started today,decreasing for 4wks ,then probably MRI scan to see if it's done the trick.

Fingers x'd I'll have few or no side effects.
01-03-2015, 05:33 PM   #34
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Started today,decreasing for 4wks ,then probably MRI scan to see if it's done the trick.

Fingers x'd I'll have few or no side effects.
Good luck!!! Hope everything goes well for you!
01-04-2015, 09:38 AM   #35
scottsma
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Have you tried a rectal mesalamine enema? Some folks just can't get results from oral mesalamine and get quick results putting the mesalamine were the problem is. I'd do that before steroids...much lower chances of side-effects.
I've used Asacol supps since dx'd, with Proctitis 8yrs ago.Crohns has travelled higher up the large bowel and supps. and foam don't reach that far.My lower bowel is all clear for now. Small mercies
01-04-2015, 09:46 AM   #36
scottsma
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Good luck!!! Hope everything goes well for you!
Day three......Taking pred at 6am as advised so that it doesn't interfere too much with sleep.Waking at 4am last two mornings and very tired by lunch time.Head feels thick and slightly achey.Not taking my usual Co-codamol as not sure if I should ???

BUT....an annoying little spot under my eye,that's at least a year old,has almost disappeared. Coincidence or what.? Who cares.
01-07-2015, 12:39 PM   #37
RickUK
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May have already asked this but apologies if so...

Have a health questionnaire to fill in for work, and it asks me if I have any bowel disorders like IBD.

Well at the moment I have only been told I have mild proctitis. Not ulcerative proctitis. (awaiting biopsy results, so until then i have been told that it is simply mild proctitis) Am i right in thinking proctitis in any form is still an IBD?
01-07-2015, 01:30 PM   #38
scottsma
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I'm almost sure that Proctitis is under the same umbrella as any other IBD diagnosis.If you type Proctitis into the search box,it'll explain.Would it make a difference to your job,one way or the other ?
I started with Proctitis 8yrs ago and managed quite well,but Crohns (mild,hopefully) has reared it's ugly head now.
01-07-2015, 01:37 PM   #39
2thFairy
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There is acute proctitis and ulcerative proctitis. Acute proctitis is NOT IBD, but ulcerative proctitis *is* IBD. Acute proctitis can be caused by all sorts of things and generally is a one-off sort of condition, whereas ulcerative proctitis is generally a chronic disease and may require maintenance medication, which is why, I assume, it would be a question on a form for your job. Ulcerative proctitis also carries a higher risk of cancer over time than another male of your age who does not have it.
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01-07-2015, 01:47 PM   #40
RickUK
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There is acute proctitis and ulcerative proctitis. Acute proctitis is NOT IBD, but ulcerative proctitis *is* IBD. Acute proctitis can be caused by all sorts of things and generally is a one-off sort of condition, whereas ulcerative proctitis is generally a chronic disease and may require maintenance medication, which is why, I assume, it would be a question on a form for your job. Ulcerative proctitis also carries a higher risk of cancer over time than another male of your age who does not have it.
Well i remember before having my colonoscopy and being told i had proctitis, about 2months before the scope I had a very high inflammation reading on my faecal calprotectin test of around 742. So when I had the scope and was told i had proctitis, the inflammation was still there but he said it was a mild form of it. My gastro consultant then explained to me that as the inflammation has stayed there for 2months (probably longer given my symtpoms) he did not think it was an acute case. Simply said as it is mild I may find my symptoms hit me very rarely compared to others and prescribed me mesalamine/asacol and told me to take them when i flare up, if i remember right
01-07-2015, 01:49 PM   #41
RickUK
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I'm almost sure that Proctitis is under the same umbrella as any other IBD diagnosis.If you type Proctitis into the search box,it'll explain.Would it make a difference to your job,one way or the other ?
I started with Proctitis 8yrs ago and managed quite well,but Crohns (mild,hopefully) has reared it's ugly head now.
No wont make a difference. I have already told them i have a condition and they just want me to let them know what it is. More than likely it is so they know if i am off with a flare up, they know why
01-07-2015, 04:36 PM   #42
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It sounds like most likely it's Ulcerative Proctitis Rick. But, I would make sure to check with your doctor to be sure.
01-08-2015, 09:58 PM   #43
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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 ?
My calpro was 742 when i had it done end of July beginning of August. Hence why i had the colonoscopy in October and found mild Proctitis.

Regarding IBS I hate that diagnosis as it doesnt really tell you much. Here's some info for you which you will laugh at, my brother in law suffers with bowel issues too, and he has mucus like myself and diarrhoea and cramps now and then, but has also had black stools recently (never had myself), and even had just blood pass through his bottom, also had instances where he has felt a wet feeling in his bottom, went to bathroom and just wiped the feeling away with tissue, and it was full of blood..... had a camera was told IBS. Yet about 4yrs ago when he first ever had a black stool they said it was a stomach ulcer. He even said to his consultant that he did research and black stool and blood are not IBS symptoms, but his consultant was adamant he has IBS as scope was clear
01-08-2015, 10:03 PM   #44
RickUK
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It sounds like most likely it's Ulcerative Proctitis Rick. But, I would make sure to check with your doctor to be sure.
Well awaiting biopsies. He said after exam that proctitis if acute, can be caused by bacteria, such as campylobacter, shigella, cryptosporidium etc but also said that when they tested my stool for calprotectin and infection, the infection test was negative for everything, but obviously still showed high inflammation.

The other causes were anal penetration through intercourse (never had!)
Cancer radiation of the area
or a form of IBD.

Just tired of waiting now..
01-09-2015, 05:13 AM   #45
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Know the frusteration of waiting. Hopefully that wait will go fast for you and that you'll be able to get some explanation soon. Sending lots of hugs and support you way.
01-15-2015, 05:39 AM   #46
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Just a quick update.......Been on Pred for two weeks,tapering.Apart from feeling generally run down,I've had bouts of being really unwell every five days or so.Pain,nausea,D,sweats,lots of mucus last week and lots of blood today.It only lasts for 2 or 3 hours in the early morning,then settles down to a sore stomach.This is not new for me,but happens every 2 or 3 months for no apparent reason.I have a Cat scan apt. on 5th Feb.I thought the Pred. would be clearing the inflammation by now ? Calp. elevation was only 300. Thanks in advance.I hope you are all well.
01-15-2015, 11:26 AM   #47
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Sorry to hear you haven't been feeling well. Hopefully they can finally getting things under control for you.

Things are still pretty stressful where I am and am still having trouble getting enough hours for my medical insurance at work. However, thankfully I'll have enough this month. Going to a meeting this morning to see if I might be able to transfer to a different store in the area so I can make sure to get the hours I need without having to worry.
01-15-2015, 01:19 PM   #48
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Nope. I left being told that I've got an assignment to get a calendar and calculate how many hours I've worked. Supposedly they calculate for 6 months now rather than by month now. No offers even to see if I can transfer anywhere. Left more frusterated than I was before and most of the time was with the HR trying to calm me down. Just makes things easier to say goodbye. Sad it's come to this after 14 years.
01-15-2015, 02:22 PM   #49
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Is there another legal person you can talk to before you are forced to quit. I am sure there are many IBDers put in that same position and it would be nice to know the legalities.

If you do have to leave, can you quickly get on another plan?
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
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01-15-2015, 05:09 PM   #50
Cross-stitch gal
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I have another place who's expressed their desire for me to come work there. I'm just waiting till they're hiring again possibly in June. If I can't get insurance right away there, I can go onto my husband's insurance just till I can get situated on theirs.

I've been a bit bored for years anyway and have been wanting to try something different. However, I've never been able to get a transfer within the company I work for. So, this might be my only option. Even though I'm mad, it take a lot more for me to go for legal (expensive) advice.
01-16-2015, 12:14 AM   #51
RickUK
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Is Inflammatory Bowel Disease considered a disability in any way, no matter how minor a disability it may be?

I ask because as stated I had to inform my employer of any disabilities I have, and IBD/Bowel conditions were under the disability heading.

News to me...
01-16-2015, 12:14 AM   #52
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Sorry to hijack the conversation!
01-16-2015, 12:16 AM   #53
RickUK
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Just a quick update.......Been on Pred for two weeks,tapering.Apart from feeling generally run down,I've had bouts of being really unwell every five days or so.Pain,nausea,D,sweats,lots of mucus last week and lots of blood today.It only lasts for 2 or 3 hours in the early morning,then settles down to a sore stomach.This is not new for me,but happens every 2 or 3 months for no apparent reason.I have a Cat scan apt. on 5th Feb.I thought the Pred. would be clearing the inflammation by now ? Calp. elevation was only 300. Thanks in advance.I hope you are all well.
I notice you have had inflammation still show up for a period of time, do you have any idea how long the inflammation has to be present for it to be considered chronic or acute?

Or anyone else know aswell
01-16-2015, 12:50 AM   #54
Cross-stitch gal
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What kind of job are you applying for? I would not put IBD as a disability listing if it were me. I'm afraid I don't know about chronic or acute. I haven't heard either of these from my doctor.
01-16-2015, 08:07 AM   #55
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Is Inflammatory Bowel Disease considered a disability in any way, no matter how minor a disability it may be?

I ask because as stated I had to inform my employer of any disabilities I have, and IBD/Bowel conditions were under the disability heading.

News to me...
No.
01-16-2015, 02:27 PM   #56
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Thank you both! I'll just list it under the "other illness" option.
01-19-2015, 08:28 PM   #57
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Seems like proctitis/rectal prolapse is back....
Grrrrrrr
Anyone end up with abdominal spasms when their proctitis is acting up ?
Not too optimistic it will go away on its own
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01-19-2015, 08:34 PM   #58
my little penguin
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One last thing does the foam continue to leak throughout the day like the suppositories?
01-20-2015, 01:25 AM   #59
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Josh gets stomach cramps quite badly when his proctitis is playing up. When he has used the foam it hasn't leaked for him throughout the day. He uses it at night and wears his pants to bed in case there is any leakage, but so far it hasn't been a problem.
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01-20-2015, 02:50 AM   #60
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I haven't had that problem with the suppositories. However, when I used the enemas I had a horrible time keeping them in me from the very start of squeezing it all in. I haven't used the foam though.

Yeah, when I was in a very bad flare I remember having abdominal spasms. But, as my flare got better the spasms eventually went away.
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