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....
Hi everyone, hope you are all well. My son remains symptom free, probably best part of 3 months now, thanks to the rectal meds. Firstly enemas, then enemas and suppositories, now just suppositories....
Quincy I don’t think he’s fully recovered from the flare yet but the bloods stopped, I think the constipation etc is still there but it’s still progress. It was the blood loss that led to the anaemia...
Hi guys, He is on oral also every day. That and the suppository for maintenance. I defo think he needed the enema at the start though. Now though the blood is staying away with just the suppository...
Hi everyone, Hope everyone is doing well. Just some positive information. Over time I’m a believer in Quincys advice on rectal meds. My son is now down to just the suppository for maintenance and it...
Thanks guys/girls it went well today he’s obviously doing well but I made my point about remaining on the rectal maintenance. We are going to try tapering but not quite yet. He had his bloods done so...
Hi fokes Have hospital tomorrow with my son, looking forward to bringing up our request for maintenance rectal meds. Looking for some advice on something else. Recently like the last 3/4 weeks my son...
The enemas are what helps best in my sons case. I have noticed you need to keep on them as long as it takes....
Yes, as time goes on I definitely agree with your perspective on rectal meds. They are by far what works best for my son....
Quincy, I agree with what your saying totally, we have an appointment in a few weeks and I will bring up exactly that. Getting sick off it personally, its almost like 'bleeding' is normal to them. I...
Thanks guys, I believe you are correct and he is undertreated. Its becoming more and more frustrating. Quincy, The doctor seems to leave him on the 1.5g granules for maintenance, which following my...
Hi Quincy, thanks for the reply. Yes foam mesalamine. He is also on the 1.5 mesalamine granules also (these have been consistent since diagnosis December 17). Flare symptoms prior to enemas was 3-4...
Hi fokes, Hope everyone is well first and foremost. My son has yet to maintain a full remission for substantial durations. Still very mild, general stools 1-2 per day, sometimes none. Had a slight...
Fokes, Now 3 years into sons diagnosis/symptoms we have just received stool & blood results. As per before diagnosis perfectly normal readings across all relevant ranges. Within these 3 years, small...
Probably people are doing better in general with more drugs and advancing medical strategies. I freaked out when my son was diagnosed with this 2 years ago, he hasn’t had a day off school or a sore...
My sons symptoms (UP) have finally totally stopped now for probably one month. He remains on salofalk granules indefinitely. How long could this last? Months, Years? What is the average?...
My sons FCP was only 96 following recent stool test, bloods perfect also. This has however always been the case, and the reason it took so long to diagnose. Is 96 a good reading?...
We have to do a stool test, just as a routine check. I read online that the stool cannot be in the water, like you have to catch it in a bag/container etc. Previously, I had always just sort off...
Straight, I assumed you meant putting them in water and sucking them up. They don’t dissolve in water lol Putting them in with yogurt seems a good idea. Could even make it a priobiotic yogurt for...
That’s a good idea, will suggest. He is ten in August so hopefully within a few years can swallow pills easier....
Does the syrup reach the rectum ipoop ?...
I think you are right Quincy especially when they don’t do any harm ! I like the enemas and my son doesn’t mind them, they are the best meds for us so far 😃 One thing I must say about the orals.......
Quincy, back on the rentals they work wonders for him. He is also not bothered about doing them and very close to doing them himself 😃. Doctor suggested next scope (a good few years away) if the...
Bit of knowledge and advice required, does anyone suffer from gas/explosive poops ? Like a spray around the pan at times but still formed stool ?...
My son struggles with mild rectal inflammation but I must admit i would try as some of the experienced members suggest with regards to the rectal meds. They work in our case very well, not sure why...
I think I will go and see the doctor about my anxiety....
I would listen to the advice, keep using them. I am going to ask for these again February just to have a store off, they seemed very good at stopping the blood completely although my son didn't have...
I will come around to this chronic illness in due course, the denial/anger/annoyed stage will pass I am sure. Just grateful for now, all is good, lets hope, along with all you guys that this remains...
That’s the thing, he’s always been healthy he has painless rectal bleeding at times and proctitis diagnosis, probably ibd/uc. It’s never even made him have a day off school. It’s all me that makes it...
I am annoying everyone, my son is so healthy but all I do is worry. Him having an illness I can’t fix was the worse thing to happen to me. He has a mild version but that don’t matter to me I have...
Does anyone suffer from this? My son has very mild ulcerative colitis and all I do is worry it gets worse. The forum on here seems to be full of decent people however the majority are severe cases....
Thanks guys, it is a struggle. I think because he is such a mild case it makes my anxiety even worse because I just think what if it gets bad all the time. I already have anxiety it’s a terrible...
Thanks, that’s a great post, made me feel good. Yea, he seems so fine and I think this disease has affected me more, I think the internet can be a dangerous place with this sort of thing....
He first has symptoms over 2 years ago, I would say in that time it has got slightly better since being diagnosed 1 year ago. I am hopeful that if it was going to spread, then it would have by now....
Thanks Ipoop for the response. 1 - Bleeding has been very difficult, all be it small. If this has finally stopped, even for a small period we will be over the moon, very happy. I will keep you...
Hey People, Back for some advice on a few accounts; 1 - Has anyone ever had sporadic remission occur, my son's proctitis seems to have stopped bleeding however, we didn't change medication, and not...
Also, last post. Thanks very much to everyone including yourself Quincy, who I get have tonnes of experience and knowledge - just think we clash slightly on our outlooks. Who knows, maybe I’ll change...
Gastro said within uk he’s never had a proctitis case present with cancer however pancolitis risk is certainly there. He said the vast vast majority of pancolitis patients also don’t get cancer....
It’s good to know it’s not a massive risk, 3/4 % is something that I guess your pretty unlucky to be one off. As for proctitis, i understand the surface area logic ipoop, makes sense logically never...
What is the overall cancer risk for UC? Variable sources online. I read no added risk with proctitis? Why is this? Is there no additional risk until 10+ years?...
Have you previously had worse symptoms? My sons only ever has been the blood...
I feel lucky as well my son is the same. I learned knowledge is power, and that can be in the form of experience or indeed medical knowledge from doctors. Your symptoms londonred look like my sons,...
The problem is, that if you are newly diagnosed with a mild case seeking information then people here rightly/wrongly come across very negative. When in truth it is a minority who struggle with the...
Two years have passed now without any pain ever. Only ever small amounts of blood. Hopefully never gets any worse 😀...
What is the difference in symptoms between Ulcerative Proctitis and Left Sided/Pancolitis? Would your experience tell you the outlook/prognosis differs?...