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Just started taking meds, worried

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Ulcerative Colitis
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Posted 5/24/2013 5:15 PM (GMT 0)
Hi, I am a 20 year old male. Just a few days ago it was confirmed that I had a mild type of UC. Only the rectum is affected, and the doctor said that there's nothing pointing to me ever getting worse (my symptoms havent been that bad, bathroom 3-4 times a day and blood in the stool, no diarrhea).

I took pentasa for about 3 weeks when they first discovered I was inflamed (before diagnosis, during colonoscopy) and all that happened was that the blood went away during that period, and a week or so sfter. I stopped taking the meds because they were making me really nauseous, and feel sick all the time.

Felt better when I was off the meds, but then the blood came back about 1-2 weeks later (I didn't experience less fequent bathroom visits.) Now I got the lab results back and was told to take them for another full month (suppositories like last time). But this time they aren't making me nauseous, they are making my bathroom visits more frequent than ever. My stomach is hurting all the time, gassy and just aching a little. The blood is usually gone the first few visits of the day, but then it comes back (not much) later in the day. I know it says pentasa may cause diarrhea, but is it really worth taking them if that's the case? And can I really be sure that's what's causing it? What are your experiences with this?

How soon before I start feeling better? I've had bloody stools off and on since early december). I think I just need to hear some comforting words, having been recently diagnosed and all... I really am worried. Sorry if it's a stupid question. I am new to this thing, and really worried.

Thank you in advance, please forgive me if the post seems dumb.

Post Edited (Nagelbitarn) : 5/24/2013 1:41:47 PM (GMT-6)

Posted 5/24/2013 5:35 PM (GMT 0)
Welcome to the forum. I am also new here... about three months, but have gotten some valuable information along the way. I may not be the best person to answer your question, but will give it a try. You may want to contact your doctor about your symptoms. I would also suggest trying a rectal suppository such as Canasa or an enema that will reach father up the rectum. I am not sure if you would need to be on both rectal and oral meds, but would probably try the rectal first. There are less side effects with those and they go right to the spot needed.
Posted 5/24/2013 5:44 PM (GMT 0)
Hey, thanks for the rapid response! I forgot to mention that I am in fact taking suppositories, 1g every night. So no oral medication. My doctor is not available right now, but I will try to contact him asap.
Posted 5/24/2013 6:16 PM (GMT 0)

This sounds similar to myself. I had really bad stomach craps and loose stools when taking Pentasa, now I am taking Olsalazie and have not had any problems. You may want to ask them about changing the meds.

Posted 5/24/2013 6:44 PM (GMT 0)
Pentasa is not an appropriate oral medication for UC if the inflammation is confined to the rectum -- it releases very high in the colon if not in the small intestine. For that reason it's more commonly used for Crohn's or pancolitis (UC that affects the entire large intestine).

It's great that you are on suppositories. You might want to try an enema as that will reach the entire rectum and the sigmoid colon. A better choice for an oral med would be something that releases lower in the GI tract, like Asacol.

Good luck!
Posted 5/24/2013 7:16 PM (GMT 0)
Well, pentasa is an oral mesalmine and one of the first medications your GI would try. A small percentage of people do have a meslamine-intolerance which would cause nausea, diarrhea, and so forth. So certainly ask your GI if you might have a meslamine-intolerance, as he can switch you to something else that won't give you those side effects.

As far as how long it takes to make you feel better, that's the million dollar question. It could take weeks or months and it all depends on how quickly you heal and we all heal differently. In the mean time rest up, avoid eating foods that are very spicy, avoid having too high of a fiber diet, limit or stop your alcohol consumption as all of those things seem to make uc worse for most of us when we are uc flaring. Bland food is your friend when you are having a uc flareup.

Best of luck, it can be quite the head-trip, learning so much all at once. Just be smart and research the disease and don't be afraid to ask us and your GI lots of questions,
Posted 5/24/2013 7:38 PM (GMT 0)
Like Pluot said, Pentasa is active throughout the GI tract, unlike the other oral mesalami9nes, and can cause some upper GI upset. Rectal nmeds are the way to go if your inflammation is limited to the rectum. the suppositories are nice and easy to use but might not be sufficient. An enema will give you more coverage.
Posted 5/25/2013 6:35 AM (GMT 0)
um, all oral mesalamines are released to be active in the terminal ileum, except Pentasa, which is released at the beginning of the ileum.

The medication goes throughout the colon...much depends on the ph level or the bacteria types that are in our intestines for them to be released properly.

The upper GI discomfort can very much be from flaring, spasming and reflux.

Any oral 5ASA is good to take, but with limited rectal inflammation, a low dosage is a good start.

The next is to use rectal meds effectively..and I's suggest the enemas over the supps, especially if the entire rectum is involved. That will cover the rectum...AND..the sigmoid to where the oral meds possibly don't reach.

q
Posted 5/25/2013 12:24 PM (GMT 0)
Nagel,

Welcome to the forum.

Sorry about your recent diagnosis.

Sounds to me like you might have a mesalamine intolerance.

Speak to your doc about it, and get other meds.

For some of us, the meds work great, for me they didn't work, and I didn't want to go to the biologics or surgery.

But I found that with a combo of certain supplements, diet modification I was able to reduce all symptoms in a major way, and then LDN, low dose naltrexone put me in remission.

If you are interested in any of these steps, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 5/25/2013 1:11 PM (GMT 0)
I also have a very mild form of UC, called proctitis.
Confined to the rectum and has remained so. I've only ever used a 1g enema (sup at first) at night. It's always worked and no major side affects.
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