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I am new, with so many questions...

Hello my name is Rebecca. New here, nice to meet everyone! Here is my story!
I just had a colonoscopy done by a GI doctor on January 10th, due to having diarrhea for 5 years, with urgency, but no pain. I went only due to the fact that it has been somewhat interrupting with my every day life, cannot go shopping without using bathroom, urgency, etc. My intestines were red and inflamed, doctor took some samples to send out for biopsy. 2 day later the receptionist read the results to me over the phone and to just about quote her.... She said, the doctor is sending in a prescription for Pentasa to take 2 pills 4 times a day, it is suggestive Crohn's Disease and wants to see you back at the end of February to see how the medicine is working. I read up online about Crohn's Disease, and do have an understanding of it. I started taking Pentasa this past Saturday and seem to be completely normal (going to the bathroom 5-8 times a day - basically watery substance). So many questions running through my head, I am not sure where to even begin.
How long does it take for the Pentasa to kick in?
How or when will they know if it ISN'T Crohn's Disease?
Will this medicine make me use the bathroom less frequently?

I am just not sure what to think at this moment....
 
Welcome!

Hi
I am sorry to hear about your troubles. Crohn's disease can usually be diagnosed as soon as they take the biopsy, and have a look at the colonoscopy, for me i got a call back 2 days after my colonoscopy, but not sure how it works all the time. The pentasa does not dramatically decrease the amount of times you use the restroom, so its effects are sometimes hard to see, but for me i would say it took about a week to see a difference. Hope this helps, and let me know if you have anymore questions!
 
Thank you kindly for responding. Now I am even more confused as to why the Doctor would say it is "suggestive Crohn's Disease".....hmmmmm
 

Astra

Moderator
Hi Rebecca
and welcome

I would take this as good news! If this doc thinks it's Crohn's then at least you now know what it is and will be prescribed the appropriate meds. I say good news cos there are a helluva lot of us who don't have a diagnosis or were fobbed off with other dx such as IBS, me included.
So, seeing inflammation, that's why he's suggesting Crohns
I was started on Pentasa 5 years ago and it worked for a while. But my inflammation got worse and I ended up with steroids, Prednisolone. I still take Pentasa tho.
Pentasa works like an aspirin, or an anti inflammatory but if there is a lot of inflammation, Pentasa won't reduce it, it just keeps it away if there's none present, to maintain remission, if that makes sense! God, I'm rambling!
Give it some more time, it might be all you need at the mo
Any questions, fire away
lotsa luv
Joan xxx
 
Hi Rebecca

Sorry to hear of your troubles.
Suggestive probably means they are not sure if it is Crohn's D.It might be Colitis or it might be CrohnsColitis.It can take many tests to be sure.
If you have active IBD & are taking pentasa if it does not reduce the bathroom visits after a few weeks it is not doing what you need it to do.


e13 boy Serovera AMP Loperamide(due to short bowel)
21 yrs of CD 9 operations
Failed meds Steroids,Aza,6mp,Pentasa
 
Thanks to everyone who has responded so far.

Rebecca85 awesome name :)

e13boy - Thank you for clearing that up for me, that makes sense now.

I probably should call the doctor and ask for a visit to ask my many questions. I don't know why he didn't want to schedule one with me in the first place? Who gives results over the phone like that??

I take aspirin (Ibuprofen) often for headaches and neck pain, so I would think that Pentasa isn't going to work well, and bring down the inflammation, but then again I am not a doctor.

Again, thank you for the responses and support. :ybiggrin:
 
You shouldn't really take aspirin or ibuprofen(or any NSAID) if you have IBD, they are harsh on the guts and can contribute to ulcers and stuff. Plain paracetamol (acetominophen or Tylenol) is gentlest on your guts. If that is not strong enough, you can get painkillers with added codeine (which has a side effect of reducing diarrhoea), it is available OTC in the UK (as cocodamol) or prescription (tylenol 3?) in the states.
 
Thank you for that information. I did read online that I shouldn't take aspirin with Pentasa anyway. I heard recently that all Tylenol is being removed from the shelves due to recalls (in the United States). So in the meantime I will be looking for a generic brand.

Does anyone know if it is safe to take an Anti-Diarrhea pill to help control my bowel movements?
 
P.S. Joan (Astra) thanks for the luv!! how is the steroids working out? any major side effects? the name alone just scares me
 
Yes it is safe to take Immodium (or generic loperamide) occasionally. But not all the time because it can cause other problems. If you need something more long term you should see your doctor about trying something else.
 
Thanks again......this forum seems to be filled with nice people and alot of knowledge.

Last night I was lying in bed thinking that I never have had any pain like some of the posts I've been reading. Sometimes nausea, but never pain....hmmmm
 

Lisa

Adminstrator
Staff member
Location
New York, USA
I haven't heard anything about Tylenol being taken off shelves....where did you hear that? (off to do some searching now!)
 
check out Tylenol's Official Website, there is some information there...

my sister-in-law works at a pharmacy and talks about all sorts of Tylenol recall and how they said they could be pulling all Tylenol off the shelves.
 

Astra

Moderator
Hiya Rebecca

I'm no longer on Prednisolone, I finished with them back in November. But last week I flared up again, and nipped it in the bud with Entocort (budesonide) which is a steroid but not as severe as Pred, more localised with reduced side effects.
Not sure where your Crohn's is? If it's in the small bowel, then Entocort would be ideal for you to reduce your inflammation and urgency. After only one week on it, I feel fine.
On another note, I have horrific neck, head and shoulder pain, sometimes it's worse than the Crohn's, really debilitating at times. I'm on Amitriptyline now at 25mg. This med is an anti depressant at high doses but works as a pain blocker in low doses and it's bloody fantastic!!
It knocks me out at bedtime, I sleep thro the night, no problem, AND most importantly, it keeps me calm on steroids!! lol
Hope you get something sorted soon, no need to be suffering, lots of meds out there to help, you just gotta scream for them!
BTW, where are you?
xxx
 
My CD is in the large intestine, just assuming for the fact that's where the colonoscopy was performed. I was just curious to know how the steroids were because I am curious to know if Pentasa does nothing (as it sounds for most people on this forum), then I may be switched to something else and don't want to be sick from medicine, I am already sick enough from running to the bathroom a hundred times a day (over-exaggerating lol). And that's funny you mention neck pain...is it from CD? I have had neck pain and the doctor can't seem to figure out why I have had this bad neck pain on my right side, the muscle under my ear, for 2 years now. I guess it's possible old age due to the fact I've never been in any sort of accidents. Hmmmm
I am in New York
 
Oh wow... Thank you for this information. I do have bad posture and i find myself always looking down, especially outside due to sensitivity to the sun light in my eyes (blues eyes). I have good days and bad days with this pain and my doctor just keeps prescribing a low dose of Percoset (not sure of the spelling). I try not to take this often because I hear you can become addicted. I bookmarked that page and I will bring this to my doctor's attention along with the medication you are recommending.
It totally makes sense though...
 
p.s.
I find that IcyHot (my new best friend lol) and Tylenol (or pain killer of some sort) and laying down for 20 mins with a cold wet washcloth over your eyes seems to do the trick for the neck pain.
 

Astra

Moderator
I hear ya with the sun sensitivity! It gives me such a migraine!
I actually went to the opticians today for an eye test. This year I'm getting Transitions, like Reactolite Rapides, and I don't care if I look like Roy Orbison! lol
And, something else that's helped me, took some time to get used to, but it's fab!
Bed of Nails! (the pillow)

http://www.bedofnails.org/

xxx
 
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