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Crohn's Disease Forum » Treatment » 5-ASA/Mesalamine » Pentasa should i take it


 
12-02-2015, 05:21 PM   #1
poppypoppops
 
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Pentasa should i take it

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
12-03-2015, 05:33 PM   #2
nitty
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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?
12-04-2015, 04:29 AM   #3
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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.
12-04-2015, 06:36 AM   #4
ronroush7
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Have they done any tests that clearly say you have Crohn's?
12-04-2015, 06:40 AM   #5
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OK. I hadn't read your last post when I asked my question. That is hard to answer.
12-04-2015, 07:08 AM   #6
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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.
12-04-2015, 07:14 AM   #7
Lisa
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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.
12-04-2015, 07:16 AM   #8
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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.
12-04-2015, 07:21 AM   #9
ronroush7
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I would say if there is active inflammation, take the Pentasa.

12-04-2015, 07:56 AM   #10
Christi
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I agree things can get so ugly so fast. Be on the safe side
12-04-2015, 11:58 AM   #11
my little penguin
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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
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12-09-2015, 10:17 AM   #12
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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.
12-09-2015, 10:42 AM   #13
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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?

12-09-2015, 11:50 AM   #14
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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.
12-09-2015, 11:54 AM   #15
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Can I ask? What type of surgery?

12-09-2015, 12:48 PM   #16
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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
12-09-2015, 01:20 PM   #17
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I am sorry.

12-09-2015, 05:23 PM   #18
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It scares me so I would rather put up with the obstruction and hope it doesn't block up completely
12-09-2015, 06:02 PM   #19
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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.
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12-09-2015, 06:50 PM   #20
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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
12-09-2015, 06:53 PM   #21
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Don't be in denial too long. You don't want to do damage to yourself if you do have Crohn's.

12-09-2015, 09:28 PM   #22
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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.
12-10-2015, 03:50 AM   #23
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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.
12-10-2015, 09:56 AM   #24
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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/
12-10-2015, 10:18 AM   #25
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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.
12-10-2015, 03:44 PM   #26
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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.
12-10-2015, 04:24 PM   #27
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It's not really possible as I am a carer to my disabled partner and our hospital is close by
12-10-2015, 09:52 PM   #28
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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).
12-10-2015, 09:59 PM   #29
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Have they checked got s blockage? Is there some alternative to pentasa?
12-11-2015, 06:09 PM   #30
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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.
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