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Newly diagnosed and help recognizing symptoms

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Ulcerative Colitis
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Posted 5/26/2018 11:14 PM (GMT 0)
Hi all

I have been diagnosed with left-sided UC early this year. I was given Rowasa enema nightly and max dose of Asacol tablets, and I am still taking both with the same dosage.

After starting the medications my symptoms improved, no more blood, no more rectal pain and a normal number of BMs, even though stool consistency varies and has never been as pre-UC.

However, recently I have been having more frequently days when I am having belly cramps, often during and after meals, and stools are mushy, but not watery, and somewhat like diarrhea, larger in volume and with a very acidic smell and undigested food. Apologies if this is gross...

Anyway, I am not experiencing the urgency and rectal pain I had before, and I don't see blood in stools or toilet paper, and frequency is about 2 or 3 controllable BMs. So I was worried if these symptoms means that my medication are not working anymore and if UC is becoming active. What is worse is the belly pain, that feels like if the belly is being clenched or bursting from a lot of pressure inside.

Is belly pain a typical sign of active UC? How is yours? Most of the people with UC I have met told me that they feel more pain in the rectum, rather than widespread in the belly.

Thank you for your help.
Posted 5/26/2018 11:26 PM (GMT 0)
I had some seriously bad episodes with cramping that was widespread on my belly. My colitis was left sided as well. Some cramps dropped me to my knees the pain was so bad. It felt like a clenching pain that would come on strong and gradually let go only to come back a short time later.
Posted 5/27/2018 12:00 AM (GMT 0)
Lots of possibilities here that will need some work between you and your GI to figure it out.

Here's what I'd think, in order of likelihood, needs to be checked:

1. It could be that the meds you are on now aren't enough to get you in sufficient remission, ie, your UC is still somewhat active somewhere in your colon.

2. It could be that you are intolerant to mesalamine medications. In about 1 out of 20 or 25 people, these meds can cause just as much GI problems as they are meant to treat.

3. It cold be that you have an infection on top of your UC. Get stool tests done to check for infectious creatures.

4. It could be that your UC is good and you are not intolerant to mesalamines and you have no infections, but that you now have IBS on top of your IBD. That happens all too often. It's estimated as many as 50% of people with IBD develop IBS (irritable bowel).

5. The undigested food is a little concerning that it could indicate something not right in the small bowel, which could be a sign of this being Crohn's and not UC. Have you had any tests done for your small intestine? When you had your colonoscopy, did they get the scope into the terminal ileum?

6. This presentation could indicate a problem with your gall bladder or pancreas.
Posted 5/27/2018 8:14 AM (GMT 0)

beave said...
Lots of possibilities here that will need some work between you and your GI to figure it out.

Here's what I'd think, in order of likelihood, needs to be checked:

1. It could be that the meds you are on now aren't enough to get you in sufficient remission, ie, your UC is still somewhat active somewhere in your colon.

2. It could be that you are intolerant to mesalamine medications. In about 1 out of 20 or 25 people, these meds can cause just as much GI problems as they are meant to treat.

3. It cold be that you have an infection on top of your UC. Get stool tests done to check for infectious creatures.

4. It could be that your UC is good and you are not intolerant to mesalamines and you have no infections, but that you now have IBS on top of your IBD. That happens all too often. It's estimated as many as 50% of people with IBD develop IBS (irritable bowel).

5. The undigested food is a little concerning that it could indicate something not right in the small bowel, which could be a sign of this being Crohn's and not UC. Have you had any tests done for your small intestine? When you had your colonoscopy, did they get the scope into the terminal ileum?

6. This presentation could indicate a problem with your gall bladder or pancreas.

Thanks for the reply.

I had biopsies taken up to the terminal ileum, which showed normal mucosa, so they excluded Chron's.

I don't think it is mesalazine, because I have been taking it for 6 months already and, if I were allergic to it, I would have had a bad reaction immediately.

I'll mention to my doctor the other points. Is there a reliable way to tell if UC is in remission, or the level and location of inflammation, besides doing another colonoscopy (which I cannot do for a while)?
Posted 5/27/2018 4:11 PM (GMT 0)
It took me 6 months to figure out that it was the mesalamine that was causing problems. I was having similar issues to you. It was easy to determine if it was the problem - I stopped taking it and within 24 hours felt amazingly better. It's not an allergic reaction, more an intolerance.
Posted 5/27/2018 4:20 PM (GMT 0)
beave summed up a lot of what i was thinking. There is a stool test called a fecal calprotectin that can tell whether there is inflammation, but it won't tell you where. In your case, since you can't do a scope for a while, you may want to do the FCP test. If the number is normal, that would make me more inclined to think it could be an intolerance to mesalamine, or IBS (IBS results could be slightly increased compared to normal). If the number is high, it's likely UC inflammation causing the symptoms. Since it's a stool test, it would be beneficial to check for pathogens when you do the FCP.
Posted 5/27/2018 5:14 PM (GMT 0)
It could be that you picked up a bacteria or bug or whatever, so having a stool testing should be a first.

No terminal ileum issues doesnt exclude Crohns colitis.

Are there any new supplements or foods you're eating....or anything you're eating daily that might contribute to quickening of the digestive tract?

Do you have a copy of your biopsies results?

Welcome to the forum.

q
Posted 5/27/2018 6:36 PM (GMT 0)

notsosicklygirl said...
beave summed up a lot of what i was thinking. There is a stool test called a fecal calprotectin that can tell whether there is inflammation, but it won't tell you where. In your case, since you can't do a scope for a while, you may want to do the FCP test. If the number is normal, that would make me more inclined to think it could be an intolerance to mesalamine, or IBS (IBS results could be slightly increased compared to normal). If the number is high, it's likely UC inflammation causing the symptoms. Since it's a stool test, it would be beneficial to check for pathogens when you do the FCP.

I had for the first time the FCP test about 6 weeks ago, together with blood work and stool test for pathogens. No bug was found on three samples collected on different days. Blood test showed normal CPR and slight anemia. The FCP test came back as about 3 or 4, with the threshold, if recall, being 50.

I did these tests at that time because I was having similar symptoms to what I am experiencing now.
My family doctor was not worried about it, given the test results, so did not give me a new referral to the GI (for how the healthcare system works in my country, I need a referral unfortunately first).

Can IBS being diagnosed by any test, like FCP for instance? Or is it basically just a differential diagnosis?

On mesalazine I was fine for the initial three months or longer, with no side effects...

Post Edited (crestvolante) : 5/27/2018 12:45:01 PM (GMT-6)

Posted 5/27/2018 6:43 PM (GMT 0)

quincy said...
It could be that you picked up a bacteria or bug or whatever, so having a stool testing should be a first.

No terminal ileum issues doesnt exclude Crohns colitis.

Are there any new supplements or foods you're eating....or anything you're eating daily that might contribute to quickening of the digestive tract?

Do you have a copy of your biopsies results?

Welcome to the forum.

q

Thank you for the welcome.

I am not taking any supplements. As far as diet, I am avoiding high fibre food for now. But I have not changed much my diet since the diagnosis.


No biopsies copy with me...
Posted 6/2/2018 8:10 AM (GMT 0)
This past week I have added to the max dose of mesalazine tablets and enema a mesalazine suppository in the morning.

I am still having symptoms which I don't understand if are due to a UC flare or what. I am having a lot of abdominal discomfort, pain and bloating, day and night, and noticed also some discomfort in the rectal area. I constantly hear very loud gurgling noises coming from the belly, especially at night when I am lying down and after I have administered the enema. Sometimes it prevents me to fall asleep for a while.

When I wake up, and often throughout the day, I pass huge amount of gas (at least it feels better when I do). I have generally 1 or 2 BMs per day, either of type 5 or 6 of the Bristol stool chart, and I don't see blood.

I have a box of Clipper tablets with me (topically absorbed steroids), should I start it as a preventive measure?
Posted 6/3/2018 1:42 PM (GMT 0)
I'd give the increased mesalamine a couple weeks before adding to or changing things further.
Posted 6/3/2018 4:22 PM (GMT 0)
I agree with ipoop.
I suggest you ask the doc for an antispasmodic. Keep us updated.

q
Posted 6/5/2018 10:31 AM (GMT 0)
Are you taking a probiotic?
That gave me the symptoms you describe.
Improved a few days after I quit taking it.

I get miserable symptoms with every one I’ve tried.
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