Update

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 increase in this a few months back, in which he had also became anaemic, this was rectified with iron supplements and he was put back on rectal meds, foam enemas in this instance. They have been excellent, cleared up blood completely the last 3/4 weeks.

My concern is last night there was a small bit off blood he had mentioned, very small apparently. Its very disheartening but followed some particularly rare fatty junk food, anyone experienced this?

It was also circa 40mins after his enema, he had not been to the toilet that day so I had a feeling he maybe wouldn't hold it (usually has no bother).

I'm just hoping it's a one off and the foam continues to work, and heal gradually. Only got 3 weeks left off course, frustrating as I feel he definitely needs them. He doesn't bother with them either, its just part off routine.

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 movements per day, most often within short time durations. None all day then 3/4 small movements in the evening. Small blood was often present, sometimes more than small. Blood tests showed anaemia which came as a surprise to the doctor.

The foam has worked a treat, for us the rectal medicines seem to work best. He has his own privacy regarding the illness now therefore, we have started respecting this a lot more. He does seem happy with the rectal medication. In his words 'its a bit annoying but not so bad'.

I am just worried the foam don't keep the small blood at bay long enough and they step up to a steroid or immunosuppressant.

A typical dose of oral mesalamine for the maintenance of remission would be in the 3 to 4 gram range. I see zero benefit in trying to taper off mesalamine completely, or even going to a really low dose. It is one of the most effective treatments for mild to moderate U.C. that exists (especially rectals), with minimal side effects, but you have to take enough of it to give it a chance to work.

Note that this a vent, but not on you.

You can request the rectals for maintenance....but tapered to that dosage as per medical studies and UCer actual experience.

And while most of his inflammation in his rectum, he HAS cecal inflammation as of diagnosis....and that area and entire colon should be treated accordingly. Obviously, with their MINIMUM dosage and stingy treatment attitude, it's not working. The concern I have is simmering inflammation continually not treated efficiently. They're only teasing the area. One cannot ever blame your son for noncompliance, so the issue is theirs alone. Ask them why they're so stringent on undertreatment.

And what you don't need to do is worry about higher tier meds....what you do need to do is demand a proper treatment dosage and mention he will taper to a midrange oral and rectal maintenance through the process HIS colon dictates.
There is enough info available that they should understand it. It's been my care for 31 years....it's mindblowing I would be repeating the same thing for that long.
q 😠

I've never been on other meds....but that's disgusting to hear of your BIL's treatment.
He can get his GP to send him to another doctor....where is he?

q

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 get my son isn't going to the bathroom 10 times per day but he is still bleeding and therefore suffering.

P****d off.

Yes, as time goes on I definitely agree with your perspective on rectal meds. They are by far what works best for my son.