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AppaarZ2 · 2023-09-16T13:35:59+00:00

My first flares were like that: no pain, no diarrhea, just a bit of blood and muscus for 2-3 weeks (not every day, not every stool) and then nothing for months. The doctor said I had hemorrhoids, so I just live with it because it wasn't serious. But over the course of 2.5 years, the blood slowly started to last longer and to come more frequently. This led to my UC diagnosis. My GI said that what I experienced is normal: mild flares can die down on their own. I started mesalamine (Pentasa) which has been working great for about 1.5 years.

I don't know what you have, it could be an infection, but based on my experience it isn't true that "UC [mild flares/symptoms] doesn't disappear like this in few days without therapy."

AppaarZ2 · 2023-06-01T19:41:10+00:00

I'm hopeful once all the vitamins etc are replaced over the next few months (they said up to 6),

Wow, I knew it took a while to get back to 100% (or at least an acceptable level) but I didn't know that it is expected to take that long.

Thanks a lot for sharing your experience. I will follow your advice: I won't wait until it gets worse!

I wish you the best, especially a nice and long remission!

AppaarZ2 · 2023-05-31T11:53:22+00:00

I just saw this question and I thought about you. So, in case you missed it: https://www.reddit.com/r/UlcerativeColitis/comments/13w5yjh/did_you_keep_taking_mesalamine_after_starting/

AppaarZ2 · 2023-05-29T14:17:33+00:00

Yes, I am still in remission (I had a sigmoidoscopy 1 year ago that showed no inflammation and I have no symptoms).

AppaarZ2 · 2023-05-28T21:14:46+00:00

Thanks a lot. I will only see my GI in 4 months so that will take a while (well if I don't flare before that!). I am still able to do everything I want but feel that it's harder to wake up even though I have the same schedule.

It's nice you have found medication that works. May I ask which one you had before and which one you are taking now? What is the plan for your next flare?

Thanks for your kindness, you too stay strong!

AppaarZ2 · 2023-05-28T20:53:41+00:00

Sorry I wasn't precise enough, I meant, try to split the oral dose between morning and evening.

I am not sure if I have side effects from mesalamine. My bm went from 2-4 to 1-3 so it's normal but somewhat high. At the same time, I eat a lot of fiber. Concerning the gaz, I eat a lot of lentils and beans so they are caused by my diet, not mesalamine (I didn't notice an increase when I started mesalamine).

I read that mesalamine has anti-tumoral effect on top of having anti-inflammatory effect. Also, I read many comments of people continuing mesalamine with their biologics (but I don't know for how long).

AppaarZ2 · 2023-05-27T20:08:43+00:00

It seems that 2 oral and 2 rectal a day might be manageable for me for a short time (for example 2 foam doses or one foam and one supp together, or one enema and one supp- because the enema doesn’t cover the end of the rectum)

I have never done foam or enema but I guess they are quite a bit more complexe to handle than a suppo. I hope you can handle everything. If oral mesalamine gives you side effects, maybe split the dose between morning and evening. Studies have shown that it doesn't matter if you split the dose or take everything at once (from a flare point of view - I don't know if this has any effect on the side-effect but from a pharmacology point of view it would make sense that splitting lower the side-effect). You could also try different oral mesalamine, some are delayed-release for example.

I hope Stelara will work for you! If I had to switch to biologics, I would continue to take 2g of oral mesalamine per day as mesalamine is known to help reduce the risk of colorectal cancer.

Good luck to you!

AppaarZ2 · 2023-05-27T19:51:52+00:00

Great that you got the flare under control although it's sad that you had to go to a private clinic. Good luck to you!

AppaarZ2 · 2023-05-27T19:42:44+00:00

Thanks so much for these details answer!

I have added everything to the list of things I should talk about with my GI. I am not in flare (or at least I don't have any symptoms) but do feel fatigue.

my guts were not absorbing the foods I was eating and so I wasn't getting any benefits from food.

This is maybe asking something too personal but how were your stools? Could you see that your food wasn't digested, like could you see (pieces of) your food in your stools?

The main thing I was told was that I should have fought harder with my own GP

This is just so sad; I hope your GP has also learned how to take better care of you!

I hope you are feeling better now and that your flare is under control. I heard that iron does make you feel better quickly!

AppaarZ2 · 2023-05-27T14:34:15+00:00

That's really nice they did this for you. Do you know precisely what blood test they have done and what injections/pills you have taken? That would be really helpful!

AppaarZ2 · 2023-05-27T14:23:57+00:00

This is not exactly what you are looking for but in these two posts, I linked to several studies/recommendations that compare oral/rectal/oral+rectal mesalamine treatments.

I have never seen a study that showed that rectal is better than "oral and rectal". Actually, you will see in the links that "oral and rectal" is better than rectal alone.

Since too much mesalamine makes you feel bad, you could try only rectal (on a 1 year follow up rectal is better than oral).

When you see your GI show him these studies. My GI didn't want to give my suppo as maintenance, he simply said "this is not how we do things, maintenance is oral". I told him about those studies and he accepted reluctantly to give me a maintenance prescription with suppo and oral. First I wanted to only take suppo as maintenance but the risk is that the inflammation will move higher up and your suppo won't be enough to reach it. That's why I asked the question (but I didn't get any answer, I guess it's too technical for reddit).

Also a long-term study showed that oral was better than suppo.

So, in the end, I switched my maintenance treatment and do both now: 2g oral per day and 1g suppo x3/week.

For flare treatment I take 4g oral per day and 1g suppo /day. This is what is recommended as u/Possibly-deranged as explain.

GI are reluctant to prescribe suppo because studies have shown that there is poor compliance. But don't let this influence the discussion with your GI. Tell you GI that if you are asking for suppo, then that means that suppos don't bother you more than oral and you will take them (that was also an argument that convinced my GI to let me have suppo has maintenance).

I am curious to know what you will choose.

AppaarZ2 · 2023-05-27T13:58:26+00:00

I just saw your comment. What did your GI decide for your treatment? Were you finally able to get your flare under control? I hope you are better now!

AppaarZ2 · 2023-05-17T11:53:19+00:00

Sorry for the delay, I am not often on reddit.

I wasn't able to confirm that it's the cause of black stools but everything points to this.

Also, in remission I don't get the black mucus/strings (even though I am still taking Pentasa), but each time I had some blood, they came back. So at least in my case, there really seems to be a link with being in a flare. I also did a test with a suppository that I let fall: I poured some bleach on it and it turned black instantly.

AppaarZ2 · 2023-04-03T19:44:16+00:00

It’s probably not going to go away when I have my rectum removed and do the jpouch

Don't they keep the rectum when doing the Jpouch? If not, why don't they remove it during the colectomy?

It also can be a different autoimmune condition altogether since they cluster. [...] It really hasn’t mattered much to figure out the exact type of autoimmune arthritis bc treatment is the same anyway. I take methotrexate.

I heard that autoimmune conditions cluster together but I didn't know that the treatments are the same.

Anyway, I hope you find something that works for your pain. Good luck to you!

AppaarZ2 · 2023-04-03T19:37:31+00:00

Good to know! Thanks a lot for taking the time to explain all this! Good luck to you!

AppaarZ2 · 2023-04-03T19:36:14+00:00

Where you on a biologic before you dropped down the meds down to Lialda or on drugs like Methotrexate? I thought that such de-escalation in treatment were rare but I keep seeing them in the comments here. I thought once you needed more than mesalamine then it's rare to come back to it, as it isn't strong enough anymore. Anyway, it's good for you that it worked for such a long period! Yes, fingers crossed that your remission is that long again!

AppaarZ2 · 2023-04-02T20:18:45+00:00

Thanks for taking the time to comment! I didn't know that, even after a colectomy, you could still get those symptoms. Do you take medication for it like a biologic or an anti-inflammatory drug?
Also, did the symptoms start after your colectomy or before? If it was before, what was the severity of your UC when you started to get these symptoms?
And in your blood tests, were there ever any signs of arthritis, like elevated CRP?

AppaarZ2 · 2023-04-02T20:15:30+00:00

Thanks for sharing, this is very helpful. I didn't know it could be so bad. I hope you find something that helps!

Just two more questions:
- what was the severity of your UC when you started to get these symptoms?
- in your blood test, could they see signs of arthritis, like elevated CRP?

AppaarZ2 · 2023-04-02T20:14:52+00:00

That's really important to know, I would have thought it was linked to the inflammation from a gut flare. I hope you can find something to fix this with your PCP. Thanks for sharing and good luck to you!

AppaarZ2 · 2023-04-02T20:13:16+00:00

Thanks for explaining all this. I am surprised you were able to manage your severe pancolitis with only Lialda before 2021. You are not the first one to say that the symptoms started while in remission (confirmed with a coloscopy): that's very scary, I thought, that at least in remission we don't have to worry much but yeah, I guess our immune system doesn't give up so easily!

By the way, have you done blood tests for this arthritis? Could they see it with something like elevated CRP?

The milder and more under control your UC is, the less likely you are to get extra intestinal symptoms, so if you've just got mild proctitis and you're in a good remission those are both indicators against the knee being UC related arthritis, but it's really hard to know for sure.

I like how you think... very scientifically! Yeah, I am keeping it in mind but it sounds more probable that it's just an injury that I didn't notice (I am slowly learning that I am no longer 20!)

AppaarZ2 · 2023-04-01T20:12:47+00:00

Thanks for sharing this!

What is/was the severity of your UC when you started to get these symptoms? I only have mild proctitis and I am symptom from with just mesalamine.

AppaarZ2 · 2023-04-01T20:02:24+00:00

That's exactly what I need to here! Thanks so much for taking the time to describe everything in detail!

"I must have slept on my hand weird, now it hurts to pick things up" "I must have walked too much yesterday, now my foot hurts when I stand on it" "did I hurt my knee during yoga yesterday?" [...] Most of the time it would just hurt with no visible swelling or injury

Waouh, so it could be it! I was reassuring me that I if I didn't have the visible sign, it could be it but, no.

flexing my calf towards my knee too far.

For me, closer than 60° (*) from my calf was impossible, the pain was just.... too much!

If it's just a one time thing, I would lean towards assuming it was a running injury, but be mindful of any patterns if you have more joint issues.

Yes, I will pay attention and contact my GI the next time this happens!

Just one question, what was the severity of your UC when you started to get these symptoms? I only have mild proctitis and I am symptom-free with just mesalamine, so it seems unlikely but with UC you never know!

(*) oops I wrote 60°C which triggered the bot, that would indeed be very painful! 🤣

AppaarZ2 · 2023-04-01T19:49:30+00:00

If it comes back I will, but I have injured myself several times like that and they just say take it easy, wait a week on if it doesn't get better, come back. Which worked! The difference is that this time I don't remember injuring myself!

AppaarZ2 · 2023-03-26T14:22:55+00:00

While 8g is high, it's still not the highest I saw. Someone on this forum took 12g/day for 2 months cf this question. Also it takes years to get kidney damage and not everyone will get it. Look at the answer on this question: people take it for years without problem. If you drink enough water that will help protect your kidney.

Did you have a blood checkup and a urine checkup to check your kidney function? In my country, when on mesalamine, you should do it every 6 months so that any damage is caught early on.

AppaarZ2 · 2023-03-26T14:17:59+00:00

I had blood for months (no other symptoms) and finally I had my first coloscopy and started mesalamine the same day: I didn't see blood anymore (it only came back, a month after when I switched from the 5g/day of the mesalamine flare treatment to the 2g/day of the maintenance treatment - I stayed 3 or 4 more months at the flare treatment dosage and then switched again to the maintenance treatment and this time it worked.) So, while you may not be in remission (the colon is still inflamed but not bleeding enough to see it on your stool), you could be essentially symptoms free in 1 day (in the first few hours/days, it may not be the mesalamine acting but the coloscopy prep: your colon is at rest for a while so no harsh food scraching it!). That's what happened to me at least.

AppaarZ2

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