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Ulcerative Colitis
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Posted 1/6/2009 8:12 PM (GMT 0)
Are there any over the counter things you can recommend for treating the other end? I pop a lot of pills but have been reluctant to try to use suppositories for stupid reasons. I am feeling better and better each day. I am coming off a 3 month flare that I didn't use any prescriptions at all. That is actually the fasted flare/recovery I have probably ever had. I have to be doing better I played basketball today at lunch for the first time in 3 months. :) :)

Well, any recomendations? I really need like a starter kit.lol. I know nothing about it and have tried to avoid having any knowledge about it.

Posted 1/6/2009 8:27 PM (GMT 0)
Well, I'm the rectal med queen, so....I suggest rectal meds.

Regarding over the counter...you could make sure you use fibre supplements (I use Metamucil Orange Smooth, NOT the sugar-free kind), and use probiotics.

It's awesome you're feeling better....but with rectal inflammation, comes the requirement (in my mind, anyway) to use rectal meds.

What pills are you popping at this time if it's not prescriptions.

q
Posted 1/6/2009 8:45 PM (GMT 0)
Thanks. i saw you were logged on. I respect your opinions and admire that you help so many. I think that I should try something to get meds to my worst area, my rectum and left side. I can tell that is the worst parts b/c I can touch my lower back and my left side feels tender most days.

I use broad spectrum digestive enzymes with every meal, except when I snack on raw fruit. I also take probiotic pearls probably like everyother day. Acidophilous pearls and another reuteri type pearl. I had been taking turmeric pills daily for about a month but havn't in about a week. Sometimes I take multi-vitamins or beta caratene pills. That's pretty much it for the pills I take. I've been drinking lots of teas and eating lots of spinach also lately. And my stress levels just dropped from big time since I won custody of my daughter but my parents have been living with me since then and that is a whole other stress... But all in all I can't honestly pinpoint what helps the most.

Should my GI give me a prescription on something to try? He would like to hear that since he is upset I don't take any maintenece meds and has made it clear to me he may not be able to continue being my Dr due to my own treatment methods.

 

Posted 1/6/2009 9:16 PM (GMT 0)
Hi..thank you for the kind words. I don't know how many have been helped with my suggestions, but it seems I have much to say..lol!

wow, , definitely new stress. Are your parents OK or are they here for a stay while moving?
It's great things are working out with your daughter..awesome start to 2009!

Your doctor has a right to request leave of you as his patient if you don't comply with reasonable treatment. I asked my doctor about that he he mentioned that he has done so with a few patients referring them to other doctors. I'm sure my eyes bulged momentarily...haha.

What you're doing can be supportive to medications...I would maybe suggest you at least start with the oral and rectal 5ASA meds..lower dosage and increase if you need.
unless you cannot take 5ASA meds at all. but you won't know unless you try.

I'm hardcore 5ASA...I'll always suggest them first because of my success with them. I do agree some cannot take them, but some doctors start at a dosage that's possibly too high and patients cannot adjust to them.

The bottom line is that I'm really intolerant of discomfort. I have no problem to take (my limit of) meds to give me relief. I would be distraught to take the big-gun meds (I typo'd it as big-bum meds..sheesh) if the 5ASA stopped working. but I'm not there yet.

It's definitely your call on how you want to deal, but don't get to the point where you are at a slow simmer and then one day require immediate assistance that might have been avoided.

Hope this helps.

quincy
Posted 1/6/2009 9:29 PM (GMT 0)
OK. I don't know if my doctor will give me the stuff to use with the meds, but I'll ask him. He shouldn't have a problem prescribing any prescription to me that I ask for. I am looking forward to a colonscopy this year. the only 1 I had was for when I was first diagnosed. I am almost certain it will show improvement but I'll have to wait and see. Thanks Q. Oh, yeah my parents moved to my town to help with my daughter. They got kicked out of their rental house b/c the owners son moved in so they have been with me for over a month. they are OK i guess but my TV is constantly on soap operas and my dad lives off sugar and pays no attention to what I tell him. GGrrr.lol. But they are closing on a house this month and I am also like there real estate agent since I learned a little about it when I baught my house 3 years ago...
Posted 1/7/2009 6:49 AM (GMT 0)
Hi..ah, clear on the parents issue. Hope all works out with the moving. At least they'll be in the area and not tying up your TV...lol!

I'm not getting what you mean regarding your doctor giving you stuff to use with the meds...?? would you mind to clarify

Do you have a date for the c-scope?

q
Posted 1/7/2009 2:55 PM (GMT 0)
No I haven't set a date for a c-scope. For sure this year and maybe very soon once I see my Dr. My initial one was 4 years ago when UC struck and I was bleeding severely with D. I am almost in remission so even if i took it today i would think it would look better since I was very sick during the first one.

I am not sure what supplies I would need to buy for rectal meds. I am assuming it's not expensive though. I guess my Dr. can explain it all...

Posted 1/7/2009 3:26 PM (GMT 0)
I remember Quincy recommending Canasa once and so I asked my doctor about it. He prescribed it for me and yes like you I was a bit unsure about using rectal meds, but I started using them and I've been on them now for a few months and wouldn't give them up for anything. They have helped me so much! I use one a night and then I am just peachy the next day.
Posted 1/7/2009 4:59 PM (GMT 0)
gtb...I'm missing the supplies part. All the rectal meds come packaged in dosages that are needed in a dispenser. The rectal meds themselves would be somewhat expensive...depending on your insurance coverage.

IndianaUC..happy to hear you're feeling better.

q
Posted 1/7/2009 5:08 PM (GMT 0)
I actually came online to write Quincy a post. Hope you don't mind me hijacking this. I just wanted to say THANK YOU for all of your "treat both ends" comments. I could NOT get this flare under control and the Rowasa enemas weren't staying IN because of my breastfeeding(speeds the urgency up and it was horrible) and putting them in was painful because of my lovely hemrrohoids, so I stopped taking them. I went to Cortifoam for almost 3 weeks and it helped but wasn't getting me back in remission(I think it did help with the hemrroiods though), so I heard Quincy and my GI docs voices in my head telling me to use the Enemas again...haha(my GI actually said studies have shown mesalamine works better than hydrocortisone). The FIRST night I did one, the next morning I actually had formed stool and NO blood. I've been on them for 5 days now and would say I am back in remission!! I am keeping up with it to be sure and then will start weaning a bit after another week I would say, but will stay on them. I HATE doing them, but I hate the flares more. Anyway, just wanted to say thanks Quincy for helping me out!!
Posted 1/7/2009 5:14 PM (GMT 0)
Wow Jen...I didn't realise you had improved so much. Are you still breastfeeding?

Stay on the Rowasa definitely for a week after you are totally "normal"...and then do every second night for at least 2 - 3 weeks. Then every 3rd night for the same amount of time.

I was at a maintenance of every third night for a long while during a difficult time many years ago.

So, please don't make a goal of going off them.....

And for the record...I HATE using them also. but the pay-off has been more than I could ever imagine.

Thanks for letting me know.

Be well,
quincy
Posted 1/7/2009 5:26 PM (GMT 0)
Yup, I am still breastfeeding. I have to. My little guy(he is actually a BIG guy and is in the 95% for weight..haha) is allergic to dairy and soy(same as his sister was, but she outgrew it), so there isn't any formula I can give him. I'm a little nervous about how much asacol I am taking, but I need to get back in remission. My doc wants me to stay on 12 Asacol until after I stop BFing(as I know I will flare when I wean), but I am wondering if maybe I should decrease once I am back in remission and just keep up with the enemas. I so wish we had the foam for the mesalamine...the foam is SO nice.

I probably won't decrease as much as I normally would on the enemas until after I wean. Probably go to every 3rd night and then just stay there to be on the safe side.

I noticed you are already tapering. Did you get your flare again control already?? Wow..that was quick!
Posted 1/7/2009 5:41 PM (GMT 0)
Thanks IndianaUC that's encouraging. And Jen, no I don't mind at all. We can all share Q. :)
I just don't know the first thing about suppositories and enemas and I thought you needed equipment or something. I'm a dork... But I am concerned about taking them b/c I didn't seem to show any type of reactions good or bad to taking asacol or colozal orally in the past. I guess I got to try something to get the meds to the affected areas.
Posted 1/7/2009 6:22 PM (GMT 0)
Is rowasa better than canasa for proctitis? is it better then the hydrocort enemas?
Posted 1/8/2009 4:50 AM (GMT 0)
Hi Jen...I would never encourage you to go off the asacol...but to taper (by one pill every week or every 2nd week) to the lowest of 6. At least you can increase if you flare...but staying at the rectal meds for maintenance and increasing them only when you start to flare...your flares may stay rectally or highest to the sigmoid.

Yes, I was without bleeding (extremely minimal but there) by the third day and pretty much without any rectal discomfort upon bms by saturday. I went another week nightly and started tapering (I would have gone another few days, but I forgot to take it one night and decided to start it early).

It was a fast improvement, especially since I was sick with a cold as well. I think my adding the Cold FX and echinacea encouraged the bleeding, but I never had that before, so I guess I was overdoing (not unlike me) considering I had 3 colds in 2 months and wanted to get better by Christmas. sigh..I was more than happy to spend Christmas day alone after all that. I quit the Cold FX when I recognised I was in a flare..so, there might be something to it.
I guess I'll always have opportunity to try it out again..lol!

Hope you continue to feel better daily.

Really is too bad your son has the same sensitivity to soy and dairy as your daughter, but some systems cannot handle certain products. I guess you can always try goat's milk?

Keep us posted as to how you're doing.

quincy
Posted 1/8/2009 4:53 AM (GMT 0)
gtb....eventually you'll get the hang of the rectal meds. yeah, they suck to use...but have a very useful purpose!

q
Posted 1/8/2009 5:01 AM (GMT 0)
WishfulMA....I'm hardcore 5ASA, and really they should be the first-line before the steroid rectal meds. The enemas are a higher dosage and deal with the rectum and sigmoid.

The suppositories deal with the rectum...lower rectum...they have a lower dosage of 5ASA and to me, they're not really for treatment of UC, but serve a huge purpose to taper the enemas and for support to use in the daytime with enemas used at night.

I wouldn't like to use the steroid enemas/foams often because of possible sensitivity/thin rectal tissue/bleeding...but I did use them once for two weeks (prescribed by another doctor when mine was away), and they did help. I went right back to the Salofalk enemas when my doc returned to give me a prescription.

The steroid enemas....I would go for foam before the liquid..just because they are so much easier to retain. I wish we in North America had the foam 5ASA enemas.

I do think the steroid foam enemas would be a good "booster" for the 5ASA enemas..to use in the morning if the 5ASA isn't enough.

So, which is better....that's subjective. I don't like the suppositories because they leak..heaven forbid if I ever have gas when I have one in..wouldn't be able to even feel it leaking..ugh.
Many others love them and have success...so, maybe much depends on experience and success.

At least there are rectal med options. A good thing.

q
Posted 1/8/2009 4:53 PM (GMT 0)
Yup, my son has the same thing and the goats milk wouldn't have all the nutrients he needs as he is only 2 months old, but he is thriving and at least this time around I know exactly what to do(don't eat ANY dairy or soy...easier said then done!)

I had some mucous last night before bed, so I'm not going to taper the Asacol yet, but after reading posts about BFing and Asacol I'm getting nervous about my high dosage. God help me if he gets sick later on in life because of me I would just DIE. I need to e-mail my GI and ask her about the issues brought up here as she told me it was perfectly safe for him.

As for suppositories vs. enemas it depends how high up your UC is. I used the suppositories when I was first diagnosed and they got me back in remission, but stopped working when my UC went higher.

As for 5-ASA vs. hydrocortisone, my GI said that in studies the 5-ASA(Rowasa/Meselamine) works better than the hydrocortisone. I just tried the cortifoam for 3 weeks and it did improve my symptoms, but it wasn't until I switched back to the Rowasa enemas that I was able to get back in remission. I think for me it is a good kick start, but doesn't take me all the way there if that makes sense, but everyone is most likely different. I also don't like the idea of using steroids if I don't need to.
Posted 1/8/2009 5:19 PM (GMT 0)
thank you all. i think i am at the point where i have been in a flare for a year now and nothing is working..that i have to go on 6MP. i take 12 asacol, canasa and hydrocort enema and i am still bleeding. i have procititis as you can see from my siggy. ....
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