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Ulcerative Colitis
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Posted 8/25/2022 11:05 AM (GMT 0)
Hi Everyone, from sunny Scotland.

I hope everyone is doing well, and managing their illness successfully.

Update on son - seeing some blood again, 1/2 stools per day, no pain, seems to be a long toilet trip first thing in morning (this is making him have to get up earlier than normal, for school, sad). We have just handed another calprotectin test in, my son is growing in height well however, has remained static weight for almost a year. This is concerning for the doctor, as he is 13.

I have a feeling we are going to move up a med tier soon, if the calprotectin score is still high!

Still on enemas nightly.

Not as worried about Azathioprine as I once was, just want my son well.

Everything else normal, sporting, excelling at school etc. Just get the feeling things arent as well in the inside.
Posted 8/25/2022 6:14 PM (GMT 0)
Hi...i was thinking about your son yesterday. I didnt realise you were in Scotland.
Is he still on oral mesalamine? And are the enemas 1, 2 or 4g?
It's possible his hormones are playing some part in his issues at this point.

Let us know the outcome of the calprotectin.
Re his weight...if he's growing in height, still active, and not lost weight, it seems not extreme. He could consider additional supplementation of proteins and vitamins. Someone just mentioned Modulen IBD powder...wonder if that would help?

q
Posted 8/25/2022 6:18 PM (GMT 0)
It makes me so sad when I hear about young people having to struggle through this horrific disease. I’m so sorry!

As far as moving up the med tier — believe me I jumped up it kicking and screaming and full of anxiety and fears. But it gave me back my life. I hope your son can quickly find the one best suited for him.
Posted 8/25/2022 7:37 PM (GMT 0)
I completely understand your concerns regarding aza and other meds for your son and I am happy to hear he is growing if not gaining weight. Hopefully these new test results will shed some light on the next move for him and remember long term inflammation may be worse for him than moving up the ladder. I am a wreck when we have to adjust meds for my almost 13 year old (not IBD) and tend to over think things. Hope you find a solution for him that works soon.
Posted 8/25/2022 7:59 PM (GMT 0)
Being in the UK he will probably try azathioprine next, before biologics (due to cost reasons). I was really afraid of azathioprine and let things escalate - while trying "alternative medicine" - until i was pooping my pants in public. At that point the risks of the drug didn't seem to matter so much.
Once you get to the immunosuppressant stage you're not moving up a ladder but taking sideways steps to find the right treatment.
Posted 8/26/2022 12:15 AM (GMT 0)
Hi all,

Thanks a lot for the responses. This place helps through the journey.

Quincy,

Yes Scotland, for our sins lol. He still takes the oral stuff and is still very active, very normal kid but 6 months ago calprotectin was 1800! Hopefully it’s came right down. Only went twice today, only blood present once so he is definitely flaring. It’s 1g enemas they always give him, I didn’t even realise there was stronger ones. That’s maybe worth a shout, he does his enema himself now and it don’t seem to bother him at all. He does it right before he goes to sleep and usually poops it out before school in the morning.

The aza does not scare me to be honest, a couple of years ago I was unstable and struggling to understand my son having a chronic condition but as time passes it’s not so bad. Certainly not for him as he handles like a champion. Only bad thing recently is he’s researched a bit himself and read some of the risk factors etc online.

I am at the stage also we’re i believe he has a good gastro. He’s really wanted to stay on mesalamine and is big on the oral and rectal regime however, has reassured me he has lots of success stories for kids on aza and biological meds even local in our area.
Posted 8/26/2022 12:22 AM (GMT 0)
Nakamura,

I'm sorry about your son. My own son is 11 and he has UC as well. I know how difficult this can be.

My son was placed on Remicade after about 3 years of ups and downs. His doctor did not want to put him on azathioprine AT ALL. She mentioned there is research about the possibility of cancer for patients taking aza at a certain age, and I think it would be your son's age. Now, I'm not in Scotland (although I did my PhD at Aberdeen!), so, as poopydoop mentioned, it may be that they would first have your son take azathioprine. I would fight against that, if at all possible, and ask that they place him on a biologic like Remicade. My son has now been on Remicade for almost 3 years and he has been in complete remission for almost the entire time. He is not a big guy, so his weight is always a bit of a struggle; but he is growing. I know these biologic meds don't work for everyone, but I sure hope they would work for your son. Let me know if I can be of any help.

Hoping the best for your son.
Posted 8/26/2022 5:28 AM (GMT 0)
Hi, so good to see an update on your son. I wish you had nothing to report, but I am happy you're feeling less stressed about the options. Realistically, he has a ton of options, so try not to stress. This illness is such a whirlwind. Please keep in touch.
Posted 8/26/2022 6:17 AM (GMT 0)
Yes...there is a 4g dosage..l would encourage he try them.

q
Posted 9/5/2022 10:44 AM (GMT 0)
Hi,

My son is also suffering from hemmies/piles - one of them comes out when hes straining to do the toilet, and is bleeding.

He showed me and I was really quite shocked at the size of it. Anyone any tips to shrink this or heal quick?

This is rough the now, seems like one thing after another.
Posted 9/5/2022 2:39 PM (GMT 0)
Sitz baths help a lot but I would check in with his doctor and ask if they recommend anything else. I had one that was so painful when I was pregnant (pre IBD) that I had to ice it just to be able to sit.
Posted 9/5/2022 5:36 PM (GMT 0)
I would go to the pharmacy & speak with the pharmacist about getting something that does not require a prescription until you can discuss this with his doctor. If he is having constipation issues this will need to be addressed, otherwise the hemorrhoids will be an additional problem to deal with.

I hope you can get him some relief.
Posted 9/6/2022 3:58 PM (GMT 0)

nakamura1967 said...
Hi,

My son is also suffering from hemmies/piles - one of them comes out when hes straining to do the toilet, and is bleeding.

He showed me and I was really quite shocked at the size of it. Anyone any tips to shrink this or heal quick?

This is rough the now, seems like one thing after another.

With prior consultation with his doctors you could consider psyllium seed husk. The recommended dose is ~8g three times a day with 0.6L water each time and it seems to be advisable to start with much smaller amounts to adjust to it. It has the added benefit of being good for UC due to it being a food source for butyrate producing bacteria. It is best to find an organic source. The one I use is Biotoday and is available in the UK.

https://pubmed.ncbi.nlm.nih.gov/28150480/

https://www.sciencedirect.com/science/article/abs/pii/s0002927098007539
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