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


 
12-12-2015, 09:24 AM   #31
Kero
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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
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Crohn's Disease Dx: October 2015
Anxiety/depression
Previously diagnosed with IBS-D

Medications:

Celexa for anxiety/depression

Crohns
Remicade HAd first loading dose, second on on Dec 23. 500mg
Imuran 150 mg
Entocort 3mg
Pentasa 4g/day-failed

IBS-D
Buscopan-failed
Librax-failed
Dicetel-failed
Modulon-failed
Prevacid-failed
Elavil-failed
12-12-2015, 09:26 AM   #32
ronroush7
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Agree

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
12-12-2015, 09:58 AM   #33
ronroush7
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When I had my resection the surgeon told me I had actually been that way for a while.

12-12-2015, 06:28 PM   #34
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Kero That's brutal

Last edited by poppypoppops; 12-12-2015 at 07:18 PM.
12-12-2015, 09:38 PM   #35
my little penguin
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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
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12-13-2015, 08:42 AM   #36
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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
12-13-2015, 09:25 AM   #37
Kero
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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
12-13-2015, 09:36 AM   #38
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Kero I'm done with you and this forum thanks
12-13-2015, 09:40 AM   #39
Kero
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Good luck! Hope you get some answers and some relief.
12-15-2015, 07:46 AM   #40
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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.
12-16-2015, 05:25 PM   #41
buttER
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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.
12-16-2015, 06:54 PM   #42
ronroush7
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Amen

12-17-2015, 06:14 AM   #43
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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.
12-17-2015, 09:19 AM   #44
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great! I am glad you are having good conversation with your medical team. wishing you well.
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''UC-like Crohn's'' since 2001:
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suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
12-17-2015, 10:10 AM   #45
ronroush7
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Best to you

12-17-2015, 11:48 AM   #46
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poppypoppops i am happy for you and that you get everything sorted soon, please keep us updated:-)
12-17-2015, 12:48 PM   #47
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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?
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12-17-2015, 04:37 PM   #48
buttER
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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.
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