Hi was in hospital due to large amounts of blood and mucus in and around stool or just blood clots and mucus with no stool had CT scan done which showed chronic inflammation in the small bowel was discharged after 1 week now the blood and mucus has started again now going 20 or 30 times to the toilet for the last 4 days and starting to get really weak and tied and very sore pain and constant sweats wife has phoned my consultant but can't be seen to 17 of may
Well out of hospital and the problems continue
- Thread starter pete b
- Start date
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I would also go to A&E/ER, especially if you cannot see your doctor. Did they give you any course of medication to keep you feeling better/in remission until you are seen again?
Hiya Pete,
Sorry for your struggles.
I have had wicked bouts of life-altering-proctitis.(lap)
I am not a doc, but I do know a little about oral cortico-steroids.
Perhaps you might be willing to share some info in the quest for insight?
If the goal is to reduce inflammation, I do not find 30mg to be aggressive at all?
How many tablets on your prescription?
Intended, according to the printed label,
to be taken how many a day? for how many days?
Does this 'script have any renewals?
Was a clear taper-off-schedule established before the word "Go"?
Oftentimes, if the outcome underwhelms, adjustments can be made...
in cooperation with medical professionals, and sometimes in dire
circumstances, in spite of them.
I say, it's your body alone, and you hold the highest veto in your health.
If you really want to discuss it further, just clearly say so?
Either way, I hope ya figure out how to get some effective results.
Plenty of folks speak of ass pain.
Unfortunately, such chat often reveals they are like at a level 3 ass pain.
Yes, I know that is enough to suck, but..
IBD'ers usually have it worse...
I have been at a level 23 sore arse for the last few years.
Lots of good folks suffering out there!
I remain cheerful & postive & ready to laugh.
Not just in spite of it all,
also to spite it all, which is a nyice bonus...
Not any kind of a brag, but in the name of full & adequate disclosure:
- currently have active Crohn's disease despite aggressive tall drugs
- I have 4-10ass cracks, anal fissures most days for many years
-I also ride 3 complex fistulas, entangled with my big sphincter
-I have been unable to find remission but remain somehow hopeful
-my bum hurts very bad
-it has done so for a very long time
If you just wanted to whine out loud to fellow sufferers, fair enough.
I see that as value added & valid.
I only wish you well.
But if you really wanna discuss how to handle your sore arse,
boy have you come to the right place!
Just ask!!!
you have options!
peace
w
ps
I don't necessarily think the stuff you were taking before the proctitis,
is the wisest path.
(hint: I'd wager a tube of blue anusol it CAUSED your ouchy proctitis.)
ergo think it over before you keep using it???
Sorry for your struggles.
I have had wicked bouts of life-altering-proctitis.(lap)
I am not a doc, but I do know a little about oral cortico-steroids.
Perhaps you might be willing to share some info in the quest for insight?
If the goal is to reduce inflammation, I do not find 30mg to be aggressive at all?
How many tablets on your prescription?
Intended, according to the printed label,
to be taken how many a day? for how many days?
Does this 'script have any renewals?
Was a clear taper-off-schedule established before the word "Go"?
Oftentimes, if the outcome underwhelms, adjustments can be made...
in cooperation with medical professionals, and sometimes in dire
circumstances, in spite of them.
I say, it's your body alone, and you hold the highest veto in your health.
If you really want to discuss it further, just clearly say so?
Either way, I hope ya figure out how to get some effective results.
Plenty of folks speak of ass pain.
Unfortunately, such chat often reveals they are like at a level 3 ass pain.
Yes, I know that is enough to suck, but..
IBD'ers usually have it worse...
I have been at a level 23 sore arse for the last few years.
Lots of good folks suffering out there!
I remain cheerful & postive & ready to laugh.
Not just in spite of it all,
also to spite it all, which is a nyice bonus...
Not any kind of a brag, but in the name of full & adequate disclosure:
- currently have active Crohn's disease despite aggressive tall drugs
- I have 4-10ass cracks, anal fissures most days for many years
-I also ride 3 complex fistulas, entangled with my big sphincter
-I have been unable to find remission but remain somehow hopeful
-my bum hurts very bad
-it has done so for a very long time
If you just wanted to whine out loud to fellow sufferers, fair enough.
I see that as value added & valid.
I only wish you well.
But if you really wanna discuss how to handle your sore arse,
boy have you come to the right place!
Just ask!!!
you have options!
peace
w
ps
I don't necessarily think the stuff you were taking before the proctitis,
is the wisest path.
(hint: I'd wager a tube of blue anusol it CAUSED your ouchy proctitis.)
ergo think it over before you keep using it???
Last edited:
Hi walt my crohns is still not in remission im taking endless amount of tablets and nothing is working and hopefully be starting infliximab soon but these last few weeks have been the worst as I have been bleeding clots and mucus over 20 times a day well I now its proctitis now and hopefully get cleared up I asked for advice as I've never had much visible blood in stool before these last few weeks I'm currently taking melesazline enemas and ascol suppositories and 30mg of prednisolne and 200mg of azathioprine to treat the crohns and proctitis
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- May 10, 2011
- Messages
- 748
Hi pete b, I feel for you. 20-30 times a day must be exhausting. Ref the blood, I've lost blood for years now, its something I've learned to live with but I don't have the scale of problems you have down below.
A few times I've lost clots that are the size of unmade packs of jelly, in other words about 4inches by 3 inches. The first time this happened I totally freaked out & was on the phone to my specialist nurse. But I get the impression that its the blackened blood from further up they worry about far more. Having said all of that if you're losing blood every time you have a bm then surely they should have done some bloods to see if you're anaemic.
The 17th seems a long way off & IMO they should be busting a gut to get you in as a priority. Please go back to them & see if you can get in even if it means them overbooking a clinic. Only you know how bad you feel, not them.
Best wishes
Grant
A few times I've lost clots that are the size of unmade packs of jelly, in other words about 4inches by 3 inches. The first time this happened I totally freaked out & was on the phone to my specialist nurse. But I get the impression that its the blackened blood from further up they worry about far more. Having said all of that if you're losing blood every time you have a bm then surely they should have done some bloods to see if you're anaemic.
The 17th seems a long way off & IMO they should be busting a gut to get you in as a priority. Please go back to them & see if you can get in even if it means them overbooking a clinic. Only you know how bad you feel, not them.
Best wishes
Grant
How long have you used the suppositories?
How long have you used the medicated enemas?
How long have you experienced this bout of proctitis?
I think it is entirely possible you are on a path I am uncomfortable with...
and perhaps not optimizing your options?
I am not a doctor nor do I play one on tv.
If I had a strange dream it might go like this.......
I'd give my sore ass a rest, and stop sticking things in there immediately.
I'd figure out how to use the oral steroid effectively.
I'd recognize AZ is an imunomodulator, which is an immune system tweak.
(not deemed helpful to the current complaint of proctitis)
The Pred has potential, but if no progress at 30mg,
you might want to take a higher dose for a short time of observation.
Did they give you a Pred taper schedule?
Sometimes folks cannot get their steroids tapered and become steroid dependent.
A plan in advance is crucial, an informed strategy paramount.
go after the inflammation systemically, not locally
(too tender, have mercy!)
Then I'd wake up from the dream armed with fresh options.
Key for me is NOT to risk shutting down cortisol production from your adrenalyne glands.
A short burst of higher oral steroids can be meaningfully revealing.
I would try a couple things at home, before I went in.
But that is just me.
In the dreamtime I saw that most sick persons should present to medical system.
Speaking only for myself, the less time I spend in the system the better.
Your mileage may, should, can & will vary.
wishing you only well,
I know your hell,
w
ps
just me
If I went to ER every time I toilet bleed & my bum hurts,
I would live there!
Hiya Pete,
Once upon a time I had a sore arse and toilet bleeding.
The GI said to stick medicine up there, locally.
The medicine made everything worse & caused wicked proctitis.
Stopping sticking stuff up there helped me.
oral steroids provide faster relief but bring downsides & risks.
each must make their own decision.
Do the instructions say to discontinue with irritation?
My backdoor has been on fire with proctitis.
For me, that suggests quitting due to irritation.
Seems like you feel you are already on just a boatload of meds.
Believe me I know how that feels.
Also, there are plenty of views & approaches to all of this.
This how I see your current and thus far ineffective boatload of meds.
I score it 2 problem local meds, 1 slow subtle IM, and inadequate steroid.
Sounds like a lot, probably well-intended if a little misguided.
I am confident you will figure it out & get it sorted.
Prednisone is often started at 40 and even 60mg.
The 30 is not working so far, and so to me a bump is a solid next try.
With or without a doctor.
ymmv
I hope you find some relief soon.
good luck man,
peace
w
ps
Did I mention Crohn's sucks?
Once upon a time I had a sore arse and toilet bleeding.
The GI said to stick medicine up there, locally.
The medicine made everything worse & caused wicked proctitis.
Stopping sticking stuff up there helped me.
oral steroids provide faster relief but bring downsides & risks.
each must make their own decision.
Do the instructions say to discontinue with irritation?
My backdoor has been on fire with proctitis.
For me, that suggests quitting due to irritation.
Seems like you feel you are already on just a boatload of meds.
Believe me I know how that feels.
Also, there are plenty of views & approaches to all of this.
This how I see your current and thus far ineffective boatload of meds.
I score it 2 problem local meds, 1 slow subtle IM, and inadequate steroid.
Sounds like a lot, probably well-intended if a little misguided.
I am confident you will figure it out & get it sorted.
Prednisone is often started at 40 and even 60mg.
The 30 is not working so far, and so to me a bump is a solid next try.
With or without a doctor.
ymmv
I hope you find some relief soon.
good luck man,
peace
w
ps
Did I mention Crohn's sucks?
