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11-11-2012, 03:18 AM   #1
No1Scopist
 
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Pentasa

Hi. I found out I had Crohn's last May, after having a portion of my lower intestines removed because of Diverticulitis. While the surgeon was in there, he said I had fistulas trying to attach themselves (the lower bowel to the upper bowel) and that was where my right-side pain was always coming from. It had been suspected, however, since the year 2000, when I had quite a few intestinal issues and tests being performed.

I am new to all of this, but mostly new in my mind. My body has been suffering for quite some time. I look forward to being a part of this support group.

I was wondering if anyone out there is on Pentasa and if there have been any side effects of it, such as anxiety. My doctor was going to put me on a low-dose chemo, but after seeing current blood workup, etc., decided that she would try something a little less threatening. I feel a lot better, except I struggle sleeping. Just wanting someone else's experience with the meds that are used for this disease. This is the first time I've ever had to take any type of medicine permanently and/or for this long. Thanks....
11-11-2012, 03:59 AM   #2
alexsmom2008
 
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my son is on pentasa, he is 3 almost 4 and has crohns. He has been on it for about a year. i have found it to work for the most part but he seems to be having a flare up now and is having a hard time sleeping and is very cranky lately. idk if this helps but good luck!!
11-11-2012, 04:05 AM   #3
Angrybird
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Hello and welcome to the forum

When I was on the Pentesa I didn't have any side effects, out of intereet have your docs ever checked your vitamin levels? If not ask to get these done as people here do tend to get deficiences in this area and this could in part contribute to how you are feeling. How long have you been on the Pentesa and has it completely settled the tum?

AB
xx
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
11-11-2012, 04:33 AM   #4
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I've been on the Pentasa for about 40 days. And, no, it's helped a lot, but now I'm beginning to experience some nightly bouts of having to get up and go and some grumblings and rumblings. This is new to me also. Never had that problem at night until now.

Interesting about the vitamins. I have a dr's appt this week. Will ask about that. Thanks.
11-11-2012, 04:48 AM   #5
Cross-stitch gal
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Hi.
I've been on pentasa since about july. A few weeks ago I finally quit seeing blood in my bms. But, I'd been sick so long that it took awhile in order to get to this point. I'm noticing that I continually get colds and once one is almost done I come down with another. Have also had a little trouble sleeping, waking up to go pee a few times a night as well. Do have some noisy gas mostly after eating. But, other than these minor things I can say that it's actually working with me (for now).
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Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

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Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

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600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


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11-11-2012, 04:52 AM   #6
No1Scopist
 
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Very interesting! I haven't had a cold in 20 years, but within the past month (since taking Pentasa), I am always fighting one from coming on (with Vitamin C and other things). Even now I am fighting one off. I thought this was strange....
11-11-2012, 04:56 AM   #7
motherbailey007
 
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my son is on pentasa, he is 3 almost 4 and has crohns. He has been on it for about a year. i have found it to work for the most part but he seems to be having a flare up now and is having a hard time sleeping and is very cranky lately. idk if this helps but good luck!!
Hi, i was put on Pentasa for approx 6 months when first diagnosed, i havent had any side effects.
11-11-2012, 04:57 AM   #8
Cross-stitch gal
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Only thing I can think of is that it's possible our immune systems are down. My stomach has been so bad for so long that my body is still recovering. But, it's something to consider...
11-11-2012, 05:00 AM   #9
No1Scopist
 
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Yes, I was thinking that same thing -- the immune system being down.
11-11-2012, 05:09 AM   #10
Cross-stitch gal
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I'm needing to update my doctor on how I'm doing since it's been awhile. She doesn't know yet that I'm no longer bleeding. But, plan on mentioning also about the colds. Might not be a bad idea to update the doctors about not only our crohn's, but also colds or flu viruses just in case. Even if there's not a whole lot they can do, sometimes it's better for them to know before things get out of control.
11-11-2012, 05:20 AM   #11
No1Scopist
 
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Yeah, my doctor makes me keep a log of everything. She's really thorough, so glad that I found her.

Have you had to have any surgeries from this disease?
11-11-2012, 05:30 AM   #12
Cross-stitch gal
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Sounds good

No, I have had no surgeries as of yet. However, I have had quite a few tests. I do feel in this way I have been pretty blessed

Have a good night & will talk with you soon. Lisa
11-11-2012, 05:31 AM   #13
No1Scopist
 
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Thanks for your input, Lisa.
11-11-2012, 05:47 AM   #14
Angrybird
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I would keep and eye on the nightly grumbles and let your doc know if things start to deteriorate, Pentesa is only used in mild cases of crohn's and most find this isn't strong enough to keep the tum settled,
11-11-2012, 01:04 PM   #15
j.bug
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I would keep and eye on the nightly grumbles and let your doc know if things start to deteriorate, Pentesa is only used in mild cases of crohn's and most find this isn't strong enough to keep the tum settled,
Agreed. When I was first diagnosed I was put on pentasa by an internal meds doc, not a gi. The GI docs said it was a good starter med for me, but I would need more to gain remission. Pentasa has been around forever though, as far as CD meds are concerned, its a pretty safe drug. I know for me, its made my gut a lil bit more noisey! But even with all the other meds, I do feel a difference if i miss a dose of pentasa.
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DX CD Terminal Ileum May 2012
DX Esophageal CD May 2012


Meds

*Pentasa *Hyoscyomine *Protonix *Gabapentin *Xanax *Wellbutrin *Ultram *Flexeril
*Vitamin D3 *B-12 injections *Iron *Remicade
*Weekly IV Fluids W/Banana Bag


Today I will fight again!!! I will not let this disease own me, or define me!!!!


11-11-2012, 09:56 PM   #16
David
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Hi there and welcome to the community

I'm curious what blood test results your doctor saw that resulted in her not using the stronger medication? Do you know?

I wish you well.
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11-15-2012, 10:02 AM   #17
No1Scopist
 
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Hi David,

Well, all I know is that it was over 20 different blood tests -- checking for enzymes, white cell count, etc., etc. Also, the surgeon had been in there a month prior and reported back to my doctor....

I saw my doctor this week. She did say, "Let's hope that the Pentasa works. I want to give it four months before switching to anything else." I'm now on the two-month mark, almost beginning the third....
11-15-2012, 10:03 AM   #18
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Thanks for the info, angrybird and j.bug. I appreciate all of your inputs....
11-15-2012, 07:37 PM   #19
j.bug
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Thanks for the info, angrybird and j.bug. I appreciate all of your inputs....
if you need anyone to talk to, feel free to message me. good luck with everything!!! Prayers and good vibes you way!!!!!!
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