Hi, My son needed the enemas to keep the blood away, the suppositories only reach so far. Not saying this is the problem however, we find the enemas much better....
He has moved to every second night and it seems fine. The doctor has written a continuous maintenance prescription so can pick them up from the pharmacy when required....
Not sure Quincy why do you think ? A bit nervous to stop all together....
Hi Quincy, Now doing enema every second night. Seems all good so far. Really happy with how things have went presently. Grateful for the enemas....
Just a note, in my experience, symptoms can be mild but inflammation severe. The two dont always relate....
Thanks, he seems very good presently, hopefully he gets a few months anyways at least. He now does not mind taking the enema, its just part of his bedtime routine, and he manages himself. He rather...
Hi Quincy Just permanently on the enemas (2g) nightly and 3g of oral mesalamine in the morning. Waiting on the calprotectin results however, certainly seems in remission symptoms wise however, the...
We have an appointment today for my son however, the last 2 weeks, zero blood, formed stool 1-2 trips per day. The enemas seem to have worked, means hopefully avoid the next tier of meds again. Just...
Yes Quincy only 1g and no they are salofalk...
The gp says he’s to be in the enemas indefinitely for now anyways. Just one each evening and been off the pred 2/3 weeks now. It’s quite positive as he’s definitely on the verge of moving up the...
Woohoo sons doing well again and finished the steroids. Enemas seem to be working really well again. Plus a suppository. He does it all himself. 3g oral as well. Very pleased and hopefully means we...
Does anyone know if a mesalamine allergy can develop and whether or not it can mimic a UC flare? Can it mimic it endoscopically as well? My son missed his maintenance meds for a few days (mix-up with...
Down to 15mg now Quincy...
Noticed my sons stools are now formed however, noticed some thick blood (pinky) almost clots on the surface of the stool. Is this part of the healing process? He has only been going once a day....
I poop, Thanks for the info, makes a lot of sense. No blood today or any symptoms. Quincy, 1g foam enemas, times 2 so 2g daily. They are like the liquid ones only foam. No blood today or any symptoms...
Thanks ipoop, so it’s common they return at that stage ? He had the enema the last two nights and didn’t go to the loo yesterday. Things are definitely not the worse but 2bh the scope was quite...
On the pred taper my son has had mild blood return at 20mg. Enemas have however been commenced which will hopefully treat things. Becoming very frustrated with this disease! Azathioprine has now been...
Hi fokes, Just a bit of pre research, hopefully my son won’t require azathioprine however, does anyone have any positive/negative experience with it ?...
Hi fokes, Update, inflammation was left sided only but was actually moderate to severe. A bit worrying considering the symptoms where not matching. I think more moderate than severe. We begin the...
Waiting on the biopsie results this week but the Cecal looked healthy this time but it has turned into left sided actually slightly past left sided but only just past the sort of bend bit...
I just think from experience so far the blood can stop but things may not still be completely right...
Yes still the 40mg but I think we will be tapering from next Friday, 5mg per week. It’s worked, I think I’m maybe being paranoid....
Hi everyone What is the natural bowel healing process? The steroids have as afore mentioned worked brilliantly, no bleeding and 1-2 stools, even none per day. I did notice however the stools are...
Hi everyone, The pred has stopped sons bleeding on day 4, we will continue the 40mg prior to the taper schedule of 5mg per week. My question...... Quincy can help perhaps. I want to try avoid...
Hi fokes, Day 5 and bleeding has stopped, hopefully the sign of positivity. He’s to stay 40mg for a few weeks then taper by 5mg each week....
Sorry to appear negative but don’t trust the fecal calprotectin test. My son had <50 2/3 times before the camera and being diagnosed. Really need the camera to find out and the biopsies....
Thanks guys; only thing I have noticed so far (day 5) is what appears some swelling around the eyes. Going to keep an eye on it as only appeared this morning. May not even be related. He only went to...
Hi all How long will this take to effect and stop bleeding ? What side effects and at what point are they likely to occur ? How long can you remain on 40mg? This is for my son, age 11. First time on...
He’s almost 12 now. How long roughly will it take the pred to work ? Currently day 3...
Definitely Quincy his inflammation does not match his symptoms. He is lucky thus far with his symptoms but it’s a horrible illness. This place is a great help. Yourself especially. The doctor seems...
40mg pred for a while Quincy, then probably go back to the enemas also. They seem focused on the steroid at the moment until the flare calms down. They seemed relatively confident the steroids would...
Hi Quincy Yes, spoke to doctor there so it’s left sided. The pathology from biopsies come back in ten days he says. He’s started 40mg of pred for a while then to taper down....
They didn’t mention another scope, I hope not for a while as he really didn’t enjoy the whole thing. Hopefully the steroids do the trick and we can calm things down as they where before. Still a bit...
My sons proctitis is now sort off left sided colitis, almost 60cm? It was quite inflamed so the doctor has gave him a 4 week course of steroids and continued other meds. If that does not work he’s...
He’s going into the hospital for the prep. I go with him, we are staying the night, this Thursday....
My son is in for his colonscopy on Friday afternoon, we go in Thursday for the bowel prep. Hate it, and a bit upset but I know its for the best. Looking forward for the results and hopefully a better...
Thanks Quincy, scope confirmed for a few weeks. Strange, only bad one toilet trip today and be said there was no blood. Sometimes I give up. Actually looking forward to getting some clarity and will...
Good Quincy but surely the ongoing bleeding isn’t good...
Not got a date yet Quincy however, I think within the next month or so. He has never had the pain even pre diagnosis but the scope showed definite mild inflammation both as proctitis and at the...
He is still on the 3 gram oral but it hasn’t done much to stop the bleeding. I am thinking rectal inflammation that won’t settle down. After the scope we are going to review the treatment plan, I...
Thanks, hopefully it’s still just in his rectum then. Looking forward to the scope....
Hi Quincy, he’s flaring pretty bad the now. Going 3/4 times per day with blood most times. Still no pain and stool is mostly formed. He’s on oral, 3g per day and 3x suppositories per day. Bleeding...
Hi everyone, wishing you all well. What would be the change in symptoms if your UP spread? Can you get a high reading (1000) with Proctitis alone, or does this suggest spread?...
Anyone read this... https://www.dailymail.co.uk/health/article-9383961/New-dawn-war-debilitating-bowel-disease.html Seems very positive?...
Thanks, going to suggest that. Beginning to get to grips with things though. Rectal meds have been the key....
Hi Quincy we have moved to 1 supp every second night, so far successful. Still taking the oral meds every day though also. Thinks ok the now, its nice for him to get a break from the blood for a...
You need oral meds and rectal meds in our experience. I would say for proctitis the rectal meds are essential to treat the disease and the oral to stop it progressing....
Hi Quincy, hope your well. So, we have now tapered my sons rectal meds to 1x suppository at night per evening. He obviously still takes the oral medicine :) It seems to be going ok, going to give it...
thanks quincy will keep you updated....
Hi fokes Quincy he eats really well and has a supp once at night and once in morning. I think he needs it, or the blood returns....