Pentasa should i take it

poppypoppops · Dec 2, 2015

Hi my IBD nurse want's me to start taking Pentasa even though I don't think I have Crohn's as I have not had any symptoms. Question is should I take it? even though I have no symptoms and what side effects could I expect from it

anda-wave-t:

nitty · Dec 3, 2015

What are the reasons that are causing the nurse to want you to take the Pentasa? I'm presuming that there must be some sort of symptoms if you are seeing an IBD nurse?

poppypoppops · Dec 4, 2015

Hi it started with me vomiting after eating so had an endoscopy which showed pyloric stenosis and they were unable to pass the scope through so I then had a CT scan which showed thickening in the terminal ileum so had a colonoscopy and they couldn't get into the terminal ileum so then had a MRI scan which said it was crohns but the only symptom I have is due to the pyloric stenosis which they want to do a operation. I do suffer with joint pain and I had a few mouth ulcers I have just had another stool test for faecal calpro as the last one was greater than 1800 and I am hoping this one will be normal other than that I am fine so I feel I do not need to take the pentasa as how will I know if it's working if I have no symptoms.

ronroush7 · Dec 4, 2015

Have they done any tests that clearly say you have Crohn's?

ronroush7 · Dec 4, 2015

OK. I hadn't read your last post when I asked my question. That is hard to answer.

nitty · Dec 4, 2015

Unfortunately, a lot of people get into trouble with Crohn's because the lack of obvious, life-affecting symptoms means that they do not take any meds to reduce inflammation.

Long-term inflammation, even if it is only mild, can lead to complications down the line in future years, potentially causing strictures, obstruction, abscesses, fistulas or even cancer.

You often read about people going drug-free for years and feeling great for it, only to end up on the operating table when the results of the internal inflammation arise. There will also be others who live drug-free successfully without any problems.

I think you need to do as much research as possible so that you can make an informed choice about which is the best option for you. You may prefer to carry on as you are if you feel well, but only if you are aware of the risks of that decision, and consider the benefits to outweigh any side-effects of drugs.

I do sympathise as I am in a similar situation. Currently my symptoms are very mild, but they are still not fully clearing on the meds I have tried so far, and I am now looking at having to start Humira soon. I'm trying to balance the long-term risks/benefits of such a strong drug against those risks/benefits of low-grade inflammation. I feel the decision would be much easier if my symptoms were worse.

Lisa · Dec 4, 2015

You may not have any outward symptoms, but from the descriptions of your tests it sounds like you have active inflammation. That is something you want to start treating before you show other symptoms.

poppypoppops · Dec 4, 2015

The results of test I have had done.

CT Scan

Short segment of wall thickening of the pylorus and first part of the Duodenum and a short segment of thickening in the wall of the terminal ileum.

CRP 16.2
Faecal calprotectin >1800

MRI Scan

7cm segment of terminal ileum demonstrating circumferential mural thickening and intense contrast enhancement in keeping with Crohn's disease with a degree of active inflammation.

Conclusion

Evidence of active crohn's disease in the terminal ileum.

ronroush7 · Dec 4, 2015

I would say if there is active inflammation, take the Pentasa.

Christi · Dec 4, 2015

I agree things can get so ugly so fast. Be on the safe side

my little penguin · Dec 4, 2015

Tend to agree
Pentasa is very benign and mild
Typically isn't enough to keep crohns under control
Most Gi equate it to giving aspirin for a brain tumor
Not going to help too much but not going to hurt either .

Worth a try

Ds tried it for 30 days when Gi wasn't sure if dx
It did nothing
Ds got worse and got officially dx with crohns
Good luck

poppypoppops · Dec 9, 2015

I have just seen my GP and he wants to put on hold me taking pentasa until I have had my x-ray and had the results so it looks like no medication till after Christmas and I am on a liquid diet again for a couple of weeks as I am having some pain due to my pyloric stenosis and slow gastric emptying which is causing extreme bloating which is no fun at all.

ronroush7 · Dec 9, 2015

poppypoppops said:
I have just seen my GP and he wants to put on hold me taking pentasa until I have had my x-ray and had the results so it looks like no medication till after Christmas and I am on a liquid diet again for a couple of weeks as I am having some pain due to my pyloric stenosis and slow gastric emptying which is causing extreme bloating which is no fun at all.

You talked about slow emptying. Sometimes, I feel like I take s while to empty. Is there anything I can take for this?

poppypoppops · Dec 9, 2015

Hi Ronroush7

I haven't been given anything for it they want to do a operation as when I had my gastric emptying study it took 6 hours for a small amount scrambled egg to leave my stomach and when I had the barium swallow with follow through that to 5 hours but I have been told that metoclopramide about 20 minutes before eating speeds up digestion.

ronroush7 · Dec 9, 2015

Can I ask? What type of surgery?

poppypoppops · Dec 9, 2015

They want to do a Laparoscopic Roux-en-Y gastrojejunostomy to relieve my gastric outlet obstruction which I'm not to keen to have done

ronroush7 · Dec 9, 2015

I am sorry.

poppypoppops · Dec 9, 2015

It scares me so I would rather put up with the obstruction and hope it doesn't block up completely

Lady Organic · Dec 9, 2015

I would contact again the IBD nurse after the GP said not to take Pentasa. If you have a IBD nurse it must mean the orders come from a gastro-enterologist? This GI must know all your history I presume... The GI is in the best position to guide you with crohn's disease and GI issues. It is not good to leave active crohn,s untreated even if you dont feel anything. feeling is subjective, disease is not. Disease is fully objective and the reality is that complications or worsening of disease can occur!

a easy way you will know if pentasa is working or not will be with fecal calprotectine which you have already done and which was very high. and your GI will maybe want to have other tests done to monitor its efficacy in the near future. good luck.

poppypoppops · Dec 9, 2015

I don't really like my IBD nurse and as for my GI I haven't seen him since July and I am not due to see him until Feb next year so I'm not going to do anything until I talk to him as I'am still in denial but my GP told me today if my faecal calprotectin is still high when I get the results of my latest stool test then I have to believe that I have crohn's

ronroush7 · Dec 9, 2015

Don't be in denial too long. You don't want to do damage to yourself if you do have Crohn's.

Lady Organic · Dec 9, 2015

I understand when we dont like a particular caregiver we become less interested in fallowing their advices, we doubt, we are not convinced, etc. Im sorry you have to go through this dilemma, but if a GI diagnosed Crohn's and prescribed drugs for it, I would really encourage you to fallow their advice to avoid any possible deterioration of your condition.

poppypoppops · Dec 10, 2015

Nobody has told me about any dangers in fact I haven't been told much about the condition I've had to look it up myself and that's where the denial comes in as I don't seem to have any of the symptoms.

Lady Organic · Dec 10, 2015

it is sad many doctors and nurses do not take time with patients, especially at diagnosis. Crohn's disease is a serious disease and medical caregivers should take more than a 15 minute appointment to guide and inform patients. Unfortunately, most of them simply do not have time due to overload of patients. Its a sad reality but thats how it is often. maybe there is another nurse at the IBD center who could inform you? There maybe also the crohn's and ulcerative colitis foundation of UK. : http://www.crohnsandcolitis.org.uk/

poppypoppops · Dec 10, 2015

When my GI told me it was Crohn's he just gave me a booklet and told me to look on Crohn's & Colitis web page and referred me to the nurse and to the surgeon when I saw him in July he said he would see me in 4 weeks time but they have cancelled many of the appointments that they made so now its Feb next year before I see him that is of course if they don't cancel that one but to be honest I cant be bothered with it all I just want it to go away so if I ignore it its gone. The only person who seems bothered is my GP which is why I trust him with my care.

Lady Organic · Dec 10, 2015

I would encourage you to change hospital and find another GI team if that is possible. when we have crohn's, a chronic disease, its important to have a team who is reliable, available when needed and with whom we can build a trust relationship. there s nothing more counter-productive than feeling you are just an number in the system. I travel an hour an a half to be with my team. It is completely worth it, everyone is friendly and always available when I have a question or need help, and they take everything seriously everytime.

poppypoppops · Dec 10, 2015

It's not really possible as I am a carer to my disabled partner and our hospital is close by

Scipio · Dec 10, 2015

I'm like you. I have been diagnosed with Crohn's but I don't want to believe it. I have almost no symptoms - just some mild ileal pain occasionally. Endoscopy and CRP are both normal. If it weren't for occasional bouts of anemia every two or three years I would swear I am not sick at all. MRE did show thickening of 6 cm of the terminal ileum.

So now I'm on 8 weeks of budesonide. I'll be starting my 4 weeks of tapering on Sunday. The big question is what next? My doc believes that mesalamine is useless for Crohn's. It works for UC only. But it sure seems like a lot of folks on this forum, and hence their doctors, use it for Crohn's too. My doc wants to try azathioprine next, but that seems too risky to me (lymphoma side effect) given how mild my disease is.

So my advice is take the pentasa/mesalimine and let us know how it works (or not).

ronroush7 · Dec 10, 2015

Have they checked got s blockage? Is there some alternative to pentasa?

poppypoppops · Dec 11, 2015

I had a OGD Dilation in Sept this year and the scope was still unable to pass so I am still blocked as to other medication because my tpmt is low at 12 my GI said Azathioprine was unsuitable for me so another option was weekly injections of Methotrexate but because I am needle phobic that would be a problem so he said Infliximab would be the best option for me then my IBD nurse said Pentasa so I feel until I have spoken to my GI I am reluctant to take anything as I would prefer to have the right medication.

Kero · Dec 12, 2015

Denial will not make it disappear. If you have a partial blockage, you have a chance for a full blockage. You say you have a disabled partner you take care of. If you continue to deny your disease, who will take care of your partner if you have a full blockage? You say you refuse to read about it and learn the side effects. Well here is one, and I'm not trying to be mean about it, but apparently I have to be blunt. If you don;t treat your disease, you can have a full blockage. That could result in a perforation and sepsis. If not caught soon enough, YOU CAN DIE. Is that not a good enough reason to take care of your disease? You may not have symptoms now, but I can promise you, there are many on the board who had zero symptoms until they were hospitalized and has to have their bowels resectioned. Which then puts you out of commission for 6-8 weeks. Who will take care of your partner?

I spent over 2 years chasing a diagnosis, and I was just diagnosed in October. This disease DISABLED ME. I can't work until meds start to work, and then maybe still not. I struggle everyday to take care of my house and family. If I would have had a diagnosis right away, I WOULDN'T BE LIKE THIS! Quit denying its happening /end rant

ronroush7 · Dec 12, 2015

Agree

ronroush7 · Dec 12, 2015

When I had my resection the surgeon told me I had actually been that way for a while.

poppypoppops · Dec 12, 2015

Kero That's brutal

my little penguin · Dec 12, 2015

Poppypoppops
Kero is right unfortunately which why a lot of parents end up with their kids on the not so mild drugs

More than one parent had their kid dx in the ICU .
It's an ugly disease that hides for some with no outside symptoms

The way I described it to my son
If you have a cut on your hand the body tries to heal it causes swelling or redness and then by forming a scab lets the skin heal .
Every time your body looks at your intestine it is trying to heal it just like a cut on the surface . It keeps repeating the cycle over and over again inflaming getting red and forming a "scab " or scar tissue.
Your intestine is soft like a garden hose normally .
When it keeps in inflaming the scar tissue gets ridged like a pvc pipe and narrow so barely anything can get through till eventually the area needs to be removed .

The goal of medicine is to trick the body from looking at the intestine and trying to fix it .
Think of the meds as wizard of oz behind the curtain .
If you get the right meds the inflammation stops and the cycle stops and your intestine stays as healthy as possible.
Left on its own you end up with narrow pic pipe that needs removed or worse

It's hard because you can't see the damage .
But it's there
Good luck

poppypoppops · Dec 13, 2015

You think Kero might right but the comments for someone trying to come to terms with what is happening to them and using this page to gain help and understanding was very harsh my therapist has told me to ignore the comments easier said than done not what I expected from this forum

Kero · Dec 13, 2015

Why was I harsh, lets see....

You ask if you should take it, and everyone is saying yes, but you are sitting there repeatedly saying I don't think I should. You won't listen to people stating that this disease isn't one to mess around with. Seriously, it's not. But then in the next breath you say we are being mean because the facts are lain out for you in black and white with personal experiences. You won't believe or take advice from PROFESSIONALS because you "don't like them" If you want support and help, don't shut down every bit of advice and help you are given. Don't sit there and say you don't have a disease and if you ignore it it will go away. You already have to be on a liquid diet because of the pain from the disease, and narrowing of intestines. IT'S NOT GOING TO GO AWAY ON ITS OWN! You don't like Pentasa? Well just leave your disease be and you can just go on the really nice strong meds that will give you much worse side effects. You won't listen to people being nice, well, here is the voice of reason. I'm done, because you aren't going to read all of this anyway because I am mean and harsh

poppypoppops · Dec 13, 2015

Kero I'm done with you and this forum thanks

Kero · Dec 13, 2015

Good luck! Hope you get some answers and some relief.

poppypoppops · Dec 15, 2015

I have now spoken to GI and told him what someone had said on this forum and he was not happy about it and told me to take no notice of it as in his words you will not die and for someone to suggest that you might was naughty so my mind is at rest now and I can now come to terms with what is happening and my GI said to phone him if I have any questions as he knows me and knows how he wants my treatment to progress.

buttER · Dec 16, 2015

poppypoppops
Great that you have a GI you can talk to and trust. I am rooting for you!!! You can pm me if you want any reassurance or someone to talk to.

I am sure everyone on this forum wants the best for everyone else. And some people do not want others to go through what they have - they share their experiences so that others can be more informed about their own choices. That one of the really valuable aspects of the forum.

ronroush7 · Dec 16, 2015

poppypoppops · Dec 17, 2015

buttER

Thank you for you kind words I am lucky as I have a excellent GP and GI also a very good therapist. I know I am messed up about being told I have Crohn's but slowly I am coming to terms with it with the help and support from my above team who all know about my issues and are giving me the time I need. I also spoke to a different IBD nurse yesterday when she rang me with my latest results and has told me things that my hospital do regards Crohn's and is sending me some information and we also talked about medication mainly budesonide which she would like me to take as well as pentasa until I see my GI in Feb and then he will decide where we go from there.

Lady Organic · Dec 17, 2015

great! I am glad you are having good conversation with your medical team. wishing you well.

ronroush7 · Dec 17, 2015

Best to you

Christi · Dec 17, 2015

poppypoppops i am happy for you and that you get everything sorted soon, please keep us updated

ImDan · Dec 17, 2015

I have been on Pentasa a few months now. Since I'm having no symptoms either it's hard to tell if it's doing anything other than decorating my feces with white dots lol.

I've heard it's one of the most mild pills so it's probably worth a try?

buttER · Dec 17, 2015

poppypoppops said:
I have now spoken to GI and told him what someone had said on this forum and he was not happy about it and told me to take no notice of it as in his words you will not die and for someone to suggest that you might was naughty so my mind is at rest now and I can now come to terms with what is happening and my GI said to phone him if I have any questions as he knows me and knows how he wants my treatment to progress.

I forgot to say, I think that is a good attitude to take. The internet is a blessing and a curse. We can find so much information, but we all need to be able to filter that information and keep an emotional detachment. Easier said than done (guilty your honour)!

I really really hope the new treatment schedule helps you and your guts. Pentasa does take weeks/months to start working althought the budesonide should give quicker relief. Seeing the GI in February is really about the right time to know if the Pentasa and budesonide are having an effect.

I am a bit concerned about the possibility of a blockage. I am not an expert, perhaps others can help you about diets that are suitable for people with obstructions, or for example what you should avoid.

Pentasa should i take it

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