New member - Guidance much needed re rectal meds pls

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JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 2/19/2008 7:27 AM (GMT -6)   
Hi everyone,

I was diagnosed in Jan last year after a two month long flare with symptoms that included bloody stools, gut pain, joint paint and tiredness. I was given a short course of Pred which cleared things up and some Pentasa to keep me in remission.

Unfortunately I couldn't tolerate the Pentasa (or Asacol) so went pretty much the whole year taking no meds other than probiotics. After switching Docs I learned about Colazide and have been taking that successfully for the last month or so.

I've been learning about all sorts of new therapies that will hopefully be available in my lifetime (I'm 23) and was wondering if anyone new of a site which had all the info in one place that was regularly updated?

Anyway, the reason why I'm posting is because I've just began flaring (lots of blood AM) and am going to the toilet maybe 5 times in the morning and a couple more times during the day. The pain is a bit less than my first flare and I'm pretty sure that this one is localized to my Rectum area.

After doing a bit of research it would seem that oral meds might not be enough to help with inflammation as far as the Rectum? Should I try some rectal meds? And if so which ones (as I can't tolerate Asacol and Pentasa orally).

Your advice would be VERY much appreciated :-)

PS, I'm in the UK and get as much VSL3 as I need on free prescription, I would be interested to hear if many other people get this probiotic on prescription also.

Cheers :-)
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 6 a day
Also taking VSL3 X1 a day


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 2/19/2008 7:45 AM (GMT -6)   
Welcome to Healing Well. You're in the right place for good info and good people!

The Crohn's and Colitis Foundation of America has a website that I find helpful for research. www.ccfa.org.

You are right in your thinking about rectal meds. Definitely the thing to use to control bleeding. Some people who can't tolerate Asacol etc, orally do fine with the rectal meds made from the same kind of medication. Unless you are really allergic to Asacol/Pentasa, I would try Rowasa enemas. I would think that in a couple days you would be able to tell if it is working. You can use Rowasa without danger forever, so that's the best enema. There are also suppositories but I'm not a big fan of them personally.

Second choice rectal meds are steroid foam or enema. (Cortifoam or Cortenema.) There are a ton of postings about all of these rectal meds so you can read about people's individual preferences and stories.

Do you have a doctor you can discuss these with? You need someone you can check in with often so that you can be sure you're on the right meds. I know the UK system is very different from the US medical system, but I encourage you to keep pushing forward until you find a doctor you can trust and work with.
-------
UC for the last ten years
Current Meds: 6MP since 2006
Past Meds: You name it; I've tried it.


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 2/19/2008 8:01 AM (GMT -6)   
Thanks very much for your advice Julee :)

I do have a doctor who is great but is just a GP so doesn't really have any specialist knowledge about UC. My GI is quite difficult to see but is supposed to be really good (in contrast to my old GI who was easy to see but didn't seem to know a great deal).

I have an appointment with my GP on Friday so will ask about a prescription for some rectal meds then.

So does Cortifoam have any benefits over Rowasa?
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 6 a day
Also taking VSL3 X1 a day


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 2/19/2008 8:20 AM (GMT -6)   
I have used cortifoam, rowasa and steroid enemas.  The cortifoam is great!!!!  It only works in the rectum area, so if your inflammation extends past that, you will need something else.  The cortifoam is a foam is easy to take and you can take it whenever or wherever you want.  I used to take mine in the morning before work and then again at bedtime. 
The rowasa enema is also great.  I thought it was hard to take at first.  It is 60ml, and uncomfortable.  You should take it at night and hold it in all night.  I take mine  and then lay on my side for an hour before I go to sleep.  It seems to be all taken up by then, so when I stand up, I have no problems. 
I haven't taken the steroid enema in a long time, I think that one was really tough for me.  And I don't recall it working all that well.  Maybe someone else on this site has taken it?  They may be better to guide you with that.  
Good Luck, and take care of yourself.
diagnosed with left-sided UC in 1997.
Currently on 10mg Prednisone
12 caps of colazal
rowasa enema nightly
35 years old, white, female


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 2/19/2008 1:03 PM (GMT -6)   
Hi JerryGarcia..welcome to the forum.

It's really trial and error sometimes regarding meds.

Would you explain why you cannot use the Pentasa or Asacol?

q
*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 2/19/2008 2:39 PM (GMT -6)   
Yea sure, I can't tolerate the Pentasa and Asacol for some reason (perhaps the Sulpha?) they make me extremely sick. The Colazide doesn't seem to have any noticeable side effects, although I've only been taking it for 6 weeks.
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 6 a day
Also taking VSL3 X1 a day


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 2/19/2008 8:13 PM (GMT -6)   
Jerry,as you're in the UK like me,I'll give you the med names we use here,as our American friends use slightly different ones.I don't know how comprehensive this list is,but it's all stuff I've used in the past.

There is an Asacol suppository,in two strengths,surprisingly enough called Asacol!There is a steroid suppository,called Predsol.There is an Asacol enema,which I wouldn't recommend,it's an aerosol can,and very hard to retain,if at all.The steroid foam enema here,is called Colifoam,and from my own experience,I would recommend it.It's fairly easy to retain,if only for an hour to start with.This is long enough to provide benefits,and as the weeks pass,stays in longer and does more good.

There's also a Pentasa enema,which I had some of,but never took.It's a liquid in a foil pouch,with a nozzle that goes you know where!It looked so difficult to administer,that I just didn't bother!

I would definitely suggest you take something rectally,you just might have to mix and match,until you find what works best for you.This disease is so individual,what works for one person,may not work for the next.

Also remember,no matter how little experience with IBD,your GP has the power to prescribe all these meds.Don't be afraid to ask to try some of them.My GP admitted that I know more about UC than he does,as I've researched it as a pet subject!

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/19/2008 9:09 PM (GMT -6)   
have you considered using the scd diet? also it depends where your dz is localized to. if it's localized to the rectum, rectal meds would be of benefit otherwise they are useless.

Mod Note:

[I have modified their signature to remove the request to contact you.  We do not allow dispensing or soliciting of professional advice on the forums.]

Post Edited By Moderator (Admin) : 2/21/2008 9:44:47 AM (GMT-7)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/19/2008 10:07 PM (GMT -6)   
I don't know why so many recommended the Rowasa when you cannot take Pentasa or Asacol.  I guess cause you said "orally".  BUT, I got BAD migraines with Rowasa.  I had headaches with Asacol pills but with the Rowasa they were much worse.  I would try cortifoam or hydrocortisone enemas and not risk the Rowasas.

Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 2/20/2008 1:50 AM (GMT -6)   
There's no sulfa in Asacol or Pentasa...the colazide is a different type of 5ASA med, so I hope it works for you. If you are sensitive to mesalamine/mesalazine of the 5ASA meds, it's possible that you can't take the same in rectal form. Steroid enemas (foam or liquid or suppositories) are a good option.

BCR....Rectal meds are good for all UCers, regardless of how high it goes....considering we all would have rectal involvement. Treating with topical oral and rectal meds is the best way initially, and even with other meds are given such as the immunosuppressants or steroids.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 2/20/2008 4:35 AM (GMT -6)   
Wow, thanks for all the info, especially the list of UK med names. I'll go to my GP on Friday armed with a bunker of ammunition and ask to try some Colifoam :-)
 
I Havent looked at the SCD diet, to be honest I think I might find it quite hard to stick to :-) I eat very healthily but have always found restricting diets very difficult to follow. Having said that, I am making sure to stay away from spicy foods and heavily flavoured sources, oh and no booze for a while.....
 
 
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 6 a day
Also taking VSL3 X1 a day


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 2/20/2008 6:33 PM (GMT -6)   
Jerry,I hope the Colifoam helps if prescribed.Try not to be too heavy handed when filling the applicator,it whooshes out the little can pretty quick,especially when full!Be sure to get enough for a dose morning and night too.

Let us know how you get on.
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