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Starting my first med today, Pentasa.

I am scared. I hate putting any meds in my body, so taking something stronger than, say, Tums is really scaring me. I have to wait until my Husband gets back from CT today to start my first dose, because I am home alone with my two small kiddos so I don't want to take it until someone is here. I am sure it will be fine, and I am praying it gives me some relief. It's just scary, ya know? I feel like soon I will wake up from all this and it will be a bad dream. Just needed to get this out somewhere, I have nobody that understands Crohn's in my life.
 
I know how you feel about putting meds in your body, I feel the same way. I've been on pentasa and I've never seen any side effects, the hardest part for me was taking such big pills. My doctor told me it's an aspirin like medication with little or no side effects, that put me at ease. I know it's scary putting a new med in your body but hopfully it helps with your crohns, and makes you better. Good luck and I hope you get better soon :)
 
I am on day 2. I am so relieved thus far no side effects, well, the major ones I was worried about. We will see about hair loss as I get into taking it. I am also glad I am able to swallow those horse pills b/c when I saw the size, I was thinking no way are they going to go down easy. But so far, they have. :)
 
I'm glad your doing well, I Was also scared about the size of the pills, they are huge! But my trick was to stick one on the back of my throat then sip water and let the pill float then swallow it. This worked well because I could barely feel them going down. I didn't have any hair loss while on the pentasa, and I was on a pretty high dose, three pills twice a day for a total of 3,000 mg a day. I wanted to mention enternal nutrition which has worked very well for me. It's where you stop eating regular foods and drink
nutritional shakes instead, for a certain amount of time from a month to a few months. I've been on it for more months then I can count and I think it's a very good treatment,
It has no side effects whatsoever, that's why I tried it in the first place. There's a few different formulas: peptamen, vivonex, moudulen, boost and ensure. The last two can be bought at places like walmart or a grocery store.
If you would like any more info on this treatment feel free to ask. I hope you continue to do well with the pentasa, good luck :)
 
Location
Missouri
Kelly, I understand completely how you feel about medicines. Even after all these years with Crohn's, unless I am flaring, I tend to shy away from the medicine side of things, if possible. I have learned that every medicine they give us to help with one thing causes other things we don't want. Hate that. Glad to hear you are doing well with it so far!
 
Hi Kelly,

Pentasa is a good start!! It will take a little while to calm your disease down if it is a drug that is going to work for you. I took 4000mg per day for a year and had no luck with it, but some people never need anything more than Pentasa to control their disease.

Although, I didn't completely stop eating, I did use BOOSt shakes a lot of days as I found it difficult to eat. Eating gave me alot of abdominal pain and since I also had a stricture on the go for awhile reducing the volume going through my bowels seemed to help. So, although I was willing to give enteral nutrition a try, my GI wasn't a big fan of it. I now am working on learning about the FODMAP diet as that is the one my GI recommends.

I also worried about the hair loss but that turned out ok. I noticed more coming out while I brushed but it never got that really bald in the front thing going. I have fine hair so I was concerned. I actually stopped using shampoo for awhile and switched to baking soda wash followed by a vinegar rinse. I found this gentler on my hair than shampoo and I also only "washed" my hair 2x per week. This made a huge change in how my healthy my hair was - even my hairdresser could not beleive what a difference it made.

Keep us posted!!

Kelley

ps Did you know you are spelling your name wrong ;) (jk)
 
I start this medication this week after years of itching on aza ! Looking forward to being able to go out in the sun but also a bit worried about any new meds...
 
Hi Cosmic Dave,
:) I have been on it now since St. Paddy's Day weekend. So far, no side effects, and it seems to be helping a bit combined with changed diet. The only negative is taking 6 big pills a day, but I guess that's the way it is. I get your fear of new meds, been there too! I hope it comforts you to hear it is mild for me to take so far, hopefully will be the same for you! Good luck!
 
Location
UK
I feel the same way about most medication! I have been treating my Crohn's myself for a few years now as my doctors were medication obsessed. I remember when I was on pentasa, i didn't stay on it long, can't remember if i had any adverse effects or whether it just didn't work. The amount of different meds that i have tried it is hard to remember names never mind specifics !!

Hope it works out well for you though and helps you get better quickly :)
 
I now have Pentasa granules and they are so much easier than the big pills. One sachet is 2g of Mesalazine or the same as four pills. I pour them on my tongue, two drinks of water and they are all gone. Might be worth trying if anyone is struggling.
 
I took that a long time ago. For the life of me I dont remember if I had side affects. I dont know what will happen when I taper off the Entocort. Its a bit much to think about all at once! one day at a time!!
 
Did absolutely nothing for me, might as well as thrown the 8 pills straight down the pan. Even my consultant (who didn't prescribe them originally) told me that they were completely useless for Crohn's found in the ileum. Took me straight off them and put me on Aza. Which worked brilliantly.
 
Location
Missouri
Pentasa and Azacol both make me feel like my flare is even worse, the side effects on me were too much, so can't take them. Glad they work for others!
 
I was not to great at taking meds when I was first diagnosed. Now older and wiser (?) and after this last episode I am still in- I will treat the disease the way my Dr recommends (for the most part) Things happen in in my body I can't see. As fast as my symptoms developed- it gave me a new respect for this disease and what it can do. I am also sure after feeling well for awhile I will get a false sense of security!!
 
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