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Ulcerative Colitis
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Posted 1/29/2015 2:56 AM (GMT 0)
Just wanted to share my update. I am finally doing better...not flaring anymore. Was having trouble for 2 and 1/2 months...first flare since diagnosed many years ago.

Some things that I think may have helped me are:
-Gave up eating fresh fruits and veggies...When I ate them, I coked them.
-Gave up coffee...Oh how I miss it!
-Gave up the occasional glass of wine I had maybe once a week.
-Ate low residue diet with bread, rice, pasta (all of the things I try to stay away from when I am trying to lose weight!
-Gave up most of my vitamins temporarily (Still take probiotics) I did this because I heard that iron was bad for my stomach and it was in my multivitamin.
-I have only been drinking water.
-Also, the Dr. increasing my canasa to twice a day was helpful...I am afraid to taper off.

Slowly I will start taking vitamins (not sure which ones yet) and I am already eating a healthy balanced diet with fiber!

Thank you all who have been here to answer my questions when I was so worried.
Posted 1/29/2015 3:33 AM (GMT 0)
I am so glad you're doing better! It's all about what finding what works for YOU is all that counts. We are all so different but truly I'm glad you found something that helps you.

Btw, I give you major kudos for giving up coffee! Lol I'm a major coffeholic, that is the one thing I refused to give up to this disease! I gave up everything else but don't take away my coffee dang it! :)
Posted 1/29/2015 3:54 AM (GMT 0)
Great!
Posted 1/30/2015 7:04 PM (GMT 0)
Awesome!
I've been in a flare for about a month, after 3 years of being on a remicade-induced remission.
I was hoping to go med-free and in remission after having my son 4 months ago... I know I need to do what you're doing-it's worked for me in the past as well.
Way to go, it's so hard to go back to that after 3 years of no restrictions (no caffeine as a working mom to a 4 month-old is killer!) . You are really making me kick-it back into gear, thank you!

Hope you continue to do well! Keep it up!
Posted 1/30/2015 8:06 PM (GMT 0)
I cant take iron and i buy multi without it, try to find that . Congrats!
Posted 1/30/2015 10:43 PM (GMT 0)
Congrats! I'm so happy to hear it :)
Posted 1/31/2015 2:00 AM (GMT 0)
Well done! glad to hear it, maybe after you have been in remission for a while you can start to add a few things a bit at a time, but good news you must be relieved!!
Posted 1/31/2015 2:52 AM (GMT 0)
Thanks! Yes, I am relieved. (-:
Posted 1/31/2015 11:06 PM (GMT 0)
That's great!!! It's very challenging to live with this disease, it's all trial and error...what works for some sadly doesn't work for all which just adds to the frustration of it all. It's always so nice to know when someone had finally found relief from this hell.
Posted 1/31/2015 11:20 PM (GMT 0)
Bleeding again.. )-: I was hoping this was over. Maybe it goes back and forth like this. I'm not used to flaring...and don't want to be. It's not horrible, but I get frustrated and scared at times. Trusting in God. Thanks everyone. It's so nice tho have support.
Posted 2/1/2015 1:02 AM (GMT 0)
Hey bellski - sorry to hear that the bleeding returned for you. I'm in a similar boat as you - had nothing for a long time and now I'm in the middle of a flare up.

I've switched to mostly decaf (will add 2 scoops of caffienated coffee with 4 decaf) stopped taking Advil, just stopped taking Metamucil today and will start Canasa tonight at bedtime. Hopefully the blood will cease soon too. And I hear ya - it is scary. I get so anxious in the morning after taking a crap and seeing blood on the TP. Gotta calm myself down, yes pray - and remember there are other people suffering with worse than what I'm dealing with. Best wishes - Jim
Posted 2/1/2015 1:04 AM (GMT 0)
Thanks Jim, Hope you are well soon too.
Posted 2/2/2015 8:42 AM (GMT 0)
Gastro advised me last time my UC flared to figure on keeping with the modifications for at least 3 months after symptoms subside. Those blasted flares seem to take forever to leave us-- so try to stay positive if you have a bad day. Hopefully, it's just a temporary blip rather than a major setback. / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 2/2/2015 9:50 AM (GMT 0)
So great to hear that you're feeling better! Really hope it continues for you. :-)
Posted 2/2/2015 12:06 PM (GMT 0)
Hi Jim - hope you get this.

First let me say I LOVE coffee as well, if it were up to me I'd have 3 cups I day. But like many, I find it's very acidic to my digestive system and so I had to cut it. Now I'm in total remission, I treat myself maybe once a month so I'm pretty much over the addiction factor - I actually replaced it with tea & a piece of dark chocolate but that's not for everyone!

Believe it or not, decaf coffee is actually worse and more acidic than real coffee. It's not the caffeine that's the problem for us, it's the high acidity of coffee itself. Decaf coffee is also somewhat toxic to your gut due to the way it's processed. You don't have to do anything with this info but it really is worthwhile giving coffee a break for a few months to see if you notice some positive benefits to your digestion. It certainly helped me a lot while trying to come out of a flare. Best of lucky with your progress.

Kev

JimC24 said...
Hey bellski - sorry to hear that the bleeding returned for you. I'm in a similar boat as you - had nothing for a long time and now I'm in the middle of a flare up.

I've switched to mostly decaf (will add 2 scoops of caffienated coffee with 4 decaf) stopped taking Advil, just stopped taking Metamucil today and will start Canasa tonight at bedtime. Hopefully the blood will cease soon too. And I hear ya - it is scary. I get so anxious in the morning after taking a crap and seeing blood on the TP. Gotta calm myself down, yes pray - and remember there are other people suffering with worse than what I'm dealing with. Best wishes - Jim

Posted 2/2/2015 12:07 PM (GMT 0)
Bellski - if you don't mind me asking, what fibre foods are you eating at the moment?

Kev
Posted 2/2/2015 2:44 PM (GMT 0)
Hi Kevin, I just read what you wrote about coffee and had to say oops as I treated myself to a cup of decaf yesterday pretending it was real...lol It didn't seem, to bother me. I have been eating a variety of foods for the past week. I started Seattle Sutton's healthy eating which provides well balanced meals, three times a day, small portions (the size we are actually suppose to be eating). They are very healthy meals, well balanced. They are low fat, low cholesterol, low sodium, no additives, all fresh, suppose to be very good for you. I think some of the fresh veggies may have started to cause an issue but now I am now trying to cook most of the items that they offer fresh, even the apples, etc. I think it is already helping. I am really hoping to give this program a good try. But I won't be adding coffee back any day soon. (-:
Posted 2/2/2015 4:52 PM (GMT 0)
belski...is there a reason you're not on the enemas?

How much Asacol?

I drink 4 - 8 cups of coffee a day...caf/decaf mix...no problems. If I'm flaring, I would notice a bit more bms because of its stimulating qualities.

It wouldn't have any effect on your bleeding, however...I think you're undertreated med-wise. Up the rectal med dosage and see how you do possible.

q
Posted 2/2/2015 5:24 PM (GMT 0)
Quincy, As soon as I picked up the enemas from the drug store, my symptoms started getting better so I am just holding onto them just in case. I was very anxious about trying them too. I was also worried if I start, would I have to do them forever? Yesterday and today were better days, I think I have it under control as long as I cook most of the fruits and veggies. I take three asacol a day and two canasa. I might try a cup of coffee, I miss it so much! I add a little non-dairy creamer so I think that cuts down the acid. Quick question....Does anyone ever use three canasa a day? I don't think I need it now but wonder if I ever do, can I try that before enemas?
Posted 2/2/2015 5:41 PM (GMT 0)
You can use Canasa x3 daily...but why? It's not going to give you the coverage you need or the impact as you would get with the enemas.

Here's the other option ..use the enemas at night and a Canasa during the day.

Please....don't make it all about the food. The food changes will impact some of your symptoms and discomfort/comfort...but you're really undertreated. Deal with the flare until all is good.

Your colon isn't acid...your stomach is. So, all you're doing is dealing with stomach discomfort, it'll have no impact on your colon healing-wise.

Hmmm, using the enemas forever...what exactly does that mean? Your UC is forever, you'll really need to use a medication that will deal with your flare and keep inflammation down. The option of the enema at night and supplement with Canasa during the day until the flare is done. You can taper the enemas....it's a process, to a schedule that you can alternate with the Canasa. I, and others, can share some maintenance option possibilities with you.

Basically....your butt rules the game. What it needs, you have to meet regardless. Do it now, or when your butt is backed into a corner and you have to finally acquiesce to doing something you've avoided out of fear and misunderstanding.

I've used the enemas and oral 5ASA since diagnosis 26 years ago. Is that the forever you're meaning? But it's the only medications I've ever been on.
My UC has never been as bad as when I was diagnosed. Do I flare...yes. Am I on nightly enemas forever? no.
Things have changed as I've aged...but I'm grateful they've been medications that I can use with success.

Hope this makes sense.
q
Posted 2/2/2015 5:53 PM (GMT 0)
Thanks Quincy, I will keep that in mind. It is just new to me and I am nervous about it. When I was reading about it it sounded difficult and like a pretty big deal. I do appreciate your knowledge and input. It is very helpful. I will consider trying the enemas if I need them. I assume once I get over that hurdle, it won't seem so bad. Thanks
Posted 2/2/2015 5:54 PM (GMT 0)
You need them now....

nothing to be scared of them....takes me 10 seconds to insert.
They are, indeed, my BEST and most loyal friend.
q
Posted 2/2/2015 5:56 PM (GMT 0)
Thanks Quincy! (-:
Posted 2/2/2015 5:58 PM (GMT 0)
always welcome for my perspective on the enemas, which you're well aware by now.

Please try them...let me know how it goes.

q
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