New to Pentasa - how do I know if it's working?

[ImDan]

Hi all,

I'm 24 and was recently told I have 'Crohn's colitis' and given Pentasa to take 6 a day indefinitely.

I was told I have an inflammation in my small bowel, however the colonoscopy could not evaluate the extent of the inflammation in there.

Fortunately I don't have any of the usual symptoms, I don't get stomach pains, diarrhea, bleeding etc. But this leaves me thinking - how do I know if the medication is helping?

Also - I've noticed white specs in my stool. I've seen a few other threads discussing this so I'm assuming this is normal.

My doctor simply laughed when I asked him if there's a way to tell if I 100% have the disease. I told him I really don't want to be on long term medication but he assured me that Pentasa has no side effects. He also said my condition will be unaffected by my diet and I can eat and exercise how I like (not sure how accurate this).

I've attached a copy of my diagnosis if this helps.

Thanks.

 

[teeny5]

What symptoms do you have? CT scan should help see extent of inflammation in the small intestine...but I am puzzled because colitis implies large intestine. Did they see it in the colon during the colonoscopy?

 

[ImDan]

What symptoms do you have? CT scan should help see extent of inflammation in the small intestine...but I am puzzled because colitis implies large intestine. Did they see it in the colon during the colonoscopy?

He mentioned it was only found in my small bowel. The 1st treatment as seen in my picture is the CT Enterography - which he said will see the extent of the inflammation inside my small bowel.

As for symptoms, I don't have any at all. It's only when the doctor puts pressure on the bottom right side of my abdomen (where the small bowel is) it's quite tender.

 

[Fernando1]

Was on Pentasa years ago, up to 12 pills a day. Did not work at all, lots of similar stories on Pentasa, cheap but ineffective.

 

[Kero]

From what I have read, Pentasa isn't so great for crohns. It only coats the bowel and isn't great for penetrating all of the tissue.

 

[buttER]

Hi ImDan
I am curious to know what your symptoms are, if you do not get the classic symptoms? That might be of interest to quite a few people.

Did you get the diagnosis because of the results of the colonoscopy?

I disagree that pentasa has no side effects. First of all, if you read the small print from information leaflet, you should be monitored regularly for good kidney and liver function. It is not common but pentasa can lead to kidney damage. And if you do take any other medicines then watch out that they do not interact with the pentasa to increase health risks.

The main side effect of pentasa for me (4.2g daily) is fatigue, at certain times I feel like I hit a brick wall. I have not found a way to overcome it. Other reported effects are headaches and nausea, so make sure you drink enough fluids and take the tablets after a meal and not on an empty stomach.

For me, with only superficial lesions in my large intestine, pentasa has been great. I did have all the classic symptoms, and they have gone. I only started to feel better after about 2 months of taking them, so any effect takes a long time to kick in. I also tried to decrease the dose when I was feeling better, but then the symptoms came back again.

Is your doctor right about diet and exercise? My GI said that in her experience diet makes a big difference in about 50% of her patients. You could keep a food diary to see how different foods make you feel, if you suspect there are culprits. Have a look on the diet section of this website to see what people are eating/avoiding to improve their health.

Good luck and keep us up to date.

 

[ronroush7]

Hi all,

I'm 24 and was recently told I have 'Crohn's colitis' and given Pentasa to take 6 a day indefinitely.

I was told I have an inflammation in my small bowel, however the colonoscopy could not evaluate the extent of the inflammation in there.

Fortunately I don't have any of the usual symptoms, I don't get stomach pains, diarrhea, bleeding etc. But this leaves me thinking - how do I know if the medication is helping?

Also - I've noticed white specs in my stool. I've seen a few other threads discussing this so I'm assuming this is normal.

My doctor simply laughed when I asked him if there's a way to tell if I 100% have the disease. I told him I really don't want to be on long term medication but he assured me that Pentasa has no side effects. He also said my condition will be unaffected by my diet and I can eat and exercise how I like (not sure how accurate this).

I've attached a copy of my diagnosis if this helps.

Thanks.

Has your doctor run a fecsl calprotectin on you? That is used to measure the amount of inflammation in your body. I have Crohn's Colitis. I am on Lialda. My understanding ,from another post on here is that is another medication used for Crohn's Colitis. Also, the disease does affect how you eat. I have had to cut out things such as dairy and gluten.

 

[ronroush7]

That word us supposed to be fecal calprotectin.☺. Best to yoiu.

 

[ImDan]

Thank you guys so much for your replies.

I will definitely ask my doctor about the fecal calprotectin at my next appointment.

Ron - I do remember my doctor using the phrase Crohn's Colitis for my condition, however in the written report it does say Crohns Disease. My doctor just said it was the same thing.

ButtER - to answer your questions:
- I took a big hit (trauma) to my stomach in January while training muay thai kickboxing - this perforated my small bowel resulting in a resection. Nothing was mentioned post-surgery that they noticed any type of inflammatory condition - however it's likely they weren't looking for it and focused purely on the injury. It was only in a check up a few months after they noticed my small bowel still had inflammation. I don't have any of the classic symptoms such as abdominal pain or diarrhea at all.
- I'm still not sure if it is a true diagnosis at this stage - the tests I've done have use the phrase 'consistant with Crohns Disease'. The tests I've done so far are Ct Scan, Colonoscopy, Ct Enterography and Prometheus Blood test - all giving the same 'consistant with crohns' result.
- Great to hear the medication has helped your symptoms. I hope it is helping the inflammation in my small bowel - I really do not want to start any biologics.
- I have the same problem with diet. Since i'm not reacting badly to any foods - I can eat whatever and have no symptoms so I don't really know what might be causing possible flareups or damage internally.

 

[buttER]

Hi ImDan
Based on the last information, can you put a post in the general IBD section asking if small bowel resection can cause chronic inflammation? Explain the reason for your resection. I hope you get more answers that way.

I'm sorry a thai kickboxing training session has lead to all of this.

 

[ImDan]

Hi ImDan
Based on the last information, can you put a post in the general IBD section asking if small bowel resection can cause chronic inflammation? Explain the reason for your resection. I hope you get more answers that way.

I'm sorry a thai kickboxing training session has lead to all of this.

Thanks mate - I've just posted it here:
http://www.crohnsforum.com/showthread.php?p=903072#post903072

Yeah everyone said it was a bit of a freak accident (since I wasn't hit THAT hard). Maybe it's just highlighted an underlying problem of mine and all it needed was a trauma to trigger the perforation.

 

[buttER]

Hi ImDan
Don't know if anyone could help. I forgot to say, you could also post in the surgery section.....