Crohn's Disease Forum » Your Story » Still getting blood on stools while taking pentasa

03-21-2014, 04:02 PM   #1
warrenh's Avatar
Join Date: Jan 2014
Location: surrey, United Kingdom
Still getting blood on stools while taking pentasa

Hi there everyone just wanted to know if ppl have any issues with pentasa? I've been taking 8 500mg tablets a day started of feeling really unwell for the first couple of months feeling tired all the time and feeling queasy. Then that went now it's just tiredness most of the time which is tolerable. But the last few weeks I keep getting a lot of wind and pain in my stomach which feels very swollen. I went to the toilet to day and I had blood on my stools again. I feel like the way I used to feel before I started the meds. Does this mean they are not working? I also get very breathless of late not to sure if it is related to my crohns or not does anyone else feel like this or have had similar problems? Would be very grateful for the advice. Thank you for your time hope u are all keeping well and not suffering to much
03-21-2014, 04:41 PM   #2
theOcean's Avatar
Join Date: Jan 2014
Location: Toronto, ON, Canada

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Talk about it to your GI. I was put on Pentasa for a long time and it turned out I had the wrong diagnosis and wasn't being treated with strong enough medication. You may need something stronger -- possibly prednisone, and possibly a new medication.
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
03-24-2014, 10:26 AM   #3
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Join Date: Nov 2012
Location: El paso, Texas

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I second theOcean. Call your GI. Meds can stop working or they are not the right meds for you. Hope you feel better soon.
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
03-24-2014, 11:28 AM   #4
nogutsnoglory's Avatar
Join Date: Sep 2009
Location: New York

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Sounds like they aren't helping and potentially making things worse. I would consult with the GI and possibly seek a second opinion.
05-16-2014, 10:23 AM   #5
Positive1's Avatar
Join Date: May 2014
Location: Toronto, Ontario
I am having the same issue. On 500mg of Pantasa * 4 pills daily.

It has been great for the first year, now for the past few days have been very bloated, then blood in stool again.

Also, it seems to have an odd smell (bacteria like) - anyone experienced this?

Not sure if this will go away and nothing to be concerned about.

I hear that Pantasa has minimal side effects in comparison to other medications.

In an event it is no longer working, any recommendations as to what has been working well for others, or what was the replacement for anyone with similar symptoms.

Trying to stay positive and hoping for the best.
05-16-2014, 01:13 PM   #6
theOcean's Avatar
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Location: Toronto, ON, Canada

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If there's a distinctive smell it may be c. diff. There's a link with information about it here.

If Pentasa hasn't been strong enough for you, you may need to ask your GI about going on a short course of prednisone and adding an immunosuppressant (Imuran/Azathioprine, 6mp, Methotrexate). Immunosuppressants take about three months to reach a therapeutic level, hence the short course of prednisone accompanying it.
05-20-2014, 01:21 PM   #7
Join Date: May 2014
Location: Cary, North Carolina
I'm taking 6 Pentasa as the maintaince medicine and it works okay for me. When I start to get a bad flare up, I get put on the stronger Budesonide and it works wonders. Budesonide definately makes me feel a little light headed but it definately works for those strong flare ups and bleeding.

Also, I get bleeding as well but it is not from Crohn's, it is from hemorrhoids. If it is bright red blood then that may not be too bad of a sign as it is blood from the surface, if it is dark red blood, then that could be from further in the intestine and could signal internal bleeding in which case you need to go to the doctor right away.
05-20-2014, 03:36 PM   #8
Positive1's Avatar
Join Date: May 2014
Location: Toronto, Ontario
Thank you for your input.

I have gone to bare essential diet. All boiled and absolutely nothing that may potentially irritate further. Drank lots of water and almost no sugar whatsoever.

The bloating has gone down, and the mucous like blood traces are no longer apparent.

It is easy to forget sometimes when in remission that you still have to watch diet and stress closely.

That was a good warning sign for me.

Most important I made best attempts to stay positive in light of the unpleasant circumstances.

I am so grateful that I joined this forum and had your support, thank you and it means the world.
05-21-2014, 05:43 AM   #9
Senior Member
Join Date: Mar 2013
Location: Coatbridge, United Kingdom
I,ve been on pentasa for quite a while approx 2 years and have spells where I don,t think it does much in fact it makes me constipated very uncomfortable so after speaking to my gi nurse I alter my dosage was on 8 a day,it's a lot when you think about it so have periods where I,ll reduce to 4 a day and things are gi nurse said something that's probably true not every time our backsides are playing up it could be viral or bug related and is very common about holiday time it's common for people coming back from holidays with a gippy tummy.

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