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Overkill by gastroenterologist?

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Ulcerative Colitis
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Posted 4/22/2020 10:57 AM (GMT 0)
am 55 & just had my first colonoscopy one month ago. Just a standard screening colonoscopy to check for cancer because of my age. Luckily I've never had gut or bowel symptoms (no UC), but the gastro doc says I have ulcers at very top of my colon (ileo-cecal valve), and some into my small intestine (ileum).
But even with no symptoms the doc wants me to start taking Pentasa 4 times a day (4000mg total).
I'm a small guy, 130 pounds. Doesn't this seem like a high dosage, and does it even make sense for someone to start a drug if they have no symptoms? (I'm not sure how long the doc would want me to keep taking it.)
Posted 4/22/2020 11:03 AM (GMT 0)
Pentasa is safe for long term use even at that dose. However I would guess you can reduce the dose once inflammation is under control (although you wouldn't be able to see that without endoscopy/colonoscopy). I would also guess that in the absence of symptoms, he wants to control the inflammation as a preventative measure against cancer (which unchecked inflammation can develop into).
Posted 4/22/2020 11:23 AM (GMT 0)
Thank you for your response, poopydoop.
Posted 4/22/2020 3:58 PM (GMT 0)
Hi...welcome to the forum.
What were the pathology results of the biopsies? If you don't know...ask for the results.

Pentasa and the dosage at this point is the appropriate medication for where the visual inflammation is.

q
Posted 4/22/2020 4:39 PM (GMT 0)
Hello Quincy, thanks for asking. Here are the pathology results:
Biopsy of ileo-cecal valve, and of ileum, both state
"active enteritis with ulceration, no dysplasia is identified."
I guess that's all just a lot of very generalized terminology, except No Dysplasia means no cancer cells were found, right? Greetings from good ol' West Virginia
Posted 4/22/2020 6:02 PM (GMT 0)
Yes, good no dysplasia! Dysplasia is a change in cells that can move towards cancer. It would depend on the stage and type, etc.

Did you receive the report via mail and have you spoken go the doctor at all?
Were other biopsies taken in the colon...

And do you have a follow up c-scope in a year or so? It's good youre on the meds.
q
Posted 4/23/2020 5:14 PM (GMT 0)
Active Enteritis means inflammation of the small intestine. The terminal ileum is considered to be part of the small intestine.

The biopsies tend to spell out the difference between one time infections versus crohnic architectural changes to your cells (that's an IBD/UC/Crohn's).
Posted 4/24/2020 1:09 PM (GMT 0)
Hi, I was diagnosed with UC in 2017.

In July 2019 I had a colonoscopy and like you there was severe inflammation near the small intestine. I take pentasa 4 times a day and salafalk suppositories 2 x a day. I personally think this is the most conservative medicinal approach. My GI wants me to take anti-TNF medication based on my last colonoscopy. It took me about three months to finally be OK with this idea, but I’m carefully monitoring my diet and my inflammation levels at the moment and holding off. I’ve decided that Biologics are not overkill for me if my GI and I agree, because the damage that can occur from Colitis is irreversible and the thought of how crohns could affect my health terrifies me. I think Doctors are taking a more top down approach now because it has been shown to have better long term outcomes.

Mesalamines, I think, are the least invasive, so I do not think that your treatment is overkill at all!
Posted 4/24/2020 2:36 PM (GMT 0)
I don't think it's overkill. You have ulcers, it's better to get them under control, otherwise, they make progress to more areas. It's also not too high of a dose in my opinion. It sounds like a lot but the max dose is 4800 daily and I am 115 and I was taking the max dose so you can likely tolerate it. Most people can. A small group of people have adverse effects. Those would be things like nausea, worsening of symptoms, or headaches. If you do well though, there's a good chance you can reduce to a lower dose if you have a clear scope in the future. You're very lucky to not have symptoms from the inflammation. I hope it stays that way for you!
Posted 4/26/2020 4:36 AM (GMT 0)

MiddleAged said...
am 55 & just had my first colonoscopy one month ago. Just a standard screening colonoscopy to check for cancer because of my age. Luckily I've never had gut or bowel symptoms (no UC), but the gastro doc says I have ulcers at very top of my colon (ileo-cecal valve), and some into my small intestine (ileum).
But even with no symptoms the doc wants me to start taking Pentasa 4 times a day (4000mg total).
I'm a small guy, 130 pounds. Doesn't this seem like a high dosage, and does it even make sense for someone to start a drug if they have no symptoms? (I'm not sure how long the doc would want me to keep taking it.)


Stuff is just gonna make you worse man. Get your blood levels checked. What's your CRP? I wouldn't take any of that crap if my inflammation levels were ok. I would take glutamine, Boswellia, or some other herbs that would help with ulcers.
Posted 4/26/2020 4:38 AM (GMT 0)

notsosicklygirl said...
I don't think it's overkill. You have ulcers, it's better to get them under control, otherwise, they make progress to more areas. It's also not too high of a dose in my opinion. It sounds like a lot but the max dose is 4800 daily and I am 115 and I was taking the max dose so you can likely tolerate it. Most people can. A small group of people have adverse effects. Those would be things like nausea, worsening of symptoms, or headaches. If you do well though, there's a good chance you can reduce to a lower dose if you have a clear scope in the future. You're very lucky to not have symptoms from the inflammation. I hope it stays that way for you!


Does pentasa even help? I've had Crohns disease for 25 years, been on multiple Crohns forums. I have never read one anecdotal piece of evidence that Pentasa actually did anything for anybody.
Posted 4/26/2020 8:12 AM (GMT 0)
Pentasa and related drugs are highly effective in treating ulcerative colitis. Less so for crohn's disease.
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