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Ulcerative Colitis
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Posted 1/5/2015 3:52 PM (GMT -7)
Rough day today, feeling very sad. I recently sent a message to my Dr. office to ask for a nutritionist or dietitian referral to help me get into remission and stay in it...I mentioned that I am a strong believer in vitamins, probiotics and diet......anyhow they got back to me and said that my doctor is "of the mind that dietary restrictions do not lead to remission of disease activity, but it may be helpful to discuss specific concerns with a dietician". I hate this stupid disease and just feel lost sometimes.....Sorry, just needed to vent.
Posted 1/5/2015 4:24 PM (GMT -7)
Agree that dealing with UC can be very frustrating. Doctor may issue that statement to discourage patients from dropping Rx meds, though-- because he or she does concede that an RD can be helpful to some extent. See if you can discuss pro- & anti-inflammatory foods when you get the RD consult; my gastro's nutrition consultant does that. It's very interesting & helpful, I think, and may even lower your grocery bill! Best wishes! / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 1/5/2015 4:35 PM (GMT -7)
The doctor who can best help you is yourself. You have to pick up the ball and run with it. With autoimmune disease you need to do the research, the testing, and make the treatment decisions. I put my first autoimmune disease in remission by doctoring myself. With UC I started getting better after I paid American Gut to analyze my stool sample and then doing a lot of research to figure out how to treat the stool sample results. No doctor, dietician, or nutritionist is going to do that for you. Doctors will not doctor so if you truly want to get better you have to do the work yourself. It can be grueling, time consuming, and mind blowing work and the doctors don't have time to do it.
Posted 1/5/2015 5:23 PM (GMT -7)
There, there, it'll be alright. We all have those moments when we need to shed a few tears. Everything is going to turn out for the best, better things will come your way, believe it.
Posted 1/5/2015 5:31 PM (GMT -7)
The one thing that I hold onto when I have low days during flares, like last week, is that when I am in remission I make the most of it. Stressing out now won't help, I have a goal of being healthy for a two week camping trip this summer. So enjoy a heating pad, tea, and book now and relax tonight, everything will get better.
Posted 1/5/2015 5:39 PM (GMT -7)
Thank you! My goal is to be as healthy as possible for an Alaskan cruise we might be taking in July. Praying...for us all...
Posted 1/5/2015 7:36 PM (GMT -7)
Do you need a referral? Usually those type of practitioners are not covered by insurance so you might as well do your own research and pick whoever you feel comfortable with. It is frustrating when you don't see eye to eye with people who are supposed to be helping you but Gary is right, be your own advocate, do what you need to and take care of yourself. Things will get better.

I feel like whenever I get a referral, it's self-serving to the person who gave the referral and not beneficial to me lol. Like they are getting a kick back. You're probably better off not taking their advice
Posted 1/5/2015 8:17 PM (GMT -7)
The doctor's office is actually putting in a referral to the dietitian they work with....so someone is suppose to call me...I will ask about insurance when they call....if it is not covered, I definitely will do research and maybe see someone else who is more in lines with what I am thinking. Thank you!
Posted 1/6/2015 5:08 AM (GMT -7)
i'm absolutely sure that very soon a medicine will be invented that will completely eliminate uc. I believe it may be the new generation fecal transplant pill, i've read that research in this field is being currently carried on in Spain in collaboration with Swedish laboratories (i'm going to find this article on the net and post it here) and they say that it is very promising. If you are in a flare now, you should switch into a completely bland diet (i have completely eliminated raw fruit and vegeteables and fiber), use rectal meds and stop worrrying :) I've been off the meds since March this year and i simply don't know why my uc has got better, most probably it's thanks to vsl and debutir which i've been taking for a while already. Or it's just without any reason because this disease is so unpredictable. The prospect on these fecal transplant pills makes me look at things more optimistic :)
Posted 1/6/2015 1:30 PM (GMT -7)
What exactly is distressing you.....that you're flaring and it's not under control?

Did you ask the doctor for the retention enemas yet?

Personally...worrying is NORMAL!! So don't get too out of whack because you're having a bad day. I wallow in it for a period of time, then move on with maybe another plan, ask questions, do research, etc. No one will have the answer for you, but there's many here with experience who can help you along the way.

You need to make a plan and see if it'll work out for you. You need more options, and since your goal is for a cruise, you need to set a plan into action and try the different options.

So you find a dietitian...it's not a replacement for your meds. You'll eat better, have maybe less symptoms, but KNOW What you're asking for before you go.

Nutrition, vitamins, etc....OK, but they're supplemental to your med regimen.

Are you on probiotics at this point?

How are you feeling today?

q
Posted 1/6/2015 4:32 PM (GMT -7)
Hi Quincy, Thanks...I'm having a better day today. I think I was upset because I'm not getting better....I thought I was starting to then it hit back a little harder....and then my doctor just is so medical and doesn't think diet has anything to do with UC....Anyhow, I can ask my doctor by sending a message for the retention enema...I know nothing about them really...but I do want to know this...Is that a type of steroid? I am afraid of steroids...I saw my mom go through some rough times on them before she died....Thanks for your advice...Yes, I take probitics....right now it is culterelle....I kind of switch around and buy whatever.
Posted 1/6/2015 4:33 PM (GMT -7)
You can get mesalamine enemas that do not contain steroids. You should try them. There are also suppositories. I like to use both.
Posted 1/6/2015 4:39 PM (GMT -7)
I use canasa...not sure if that is a mesalamine...from what I understand it is the same thing as Asacol, but a suppository. Thanks...I will mention that to my Dr. Office.
Posted 1/6/2015 5:27 PM (GMT -7)
Yes, asacol and canasa contain meslamine; in fact it is their active ingredient, an anti-inflammatory medication. Rowasa or meslamine-enema have about 4 times the dosage of meslamine that your canasa does; much more potent stuff that reaches further. Might be just what you need, good luck,
Posted 1/6/2015 8:22 PM (GMT -7)
Thank you!
Posted 1/6/2015 9:32 PM (GMT -7)

garylouisville said...
The doctor who can best help you is yourself. You have to pick up the ball and run with it. With autoimmune disease you need to do the research, the testing, and make the treatment decisions. I put my first autoimmune disease in remission by doctoring myself. With UC I started getting better after I paid American Gut to analyze my stool sample and then doing a lot of research to figure out how to treat the stool sample results. No doctor, dietician, or nutritionist is going to do that for you. Doctors will not doctor so if you truly want to get better you have to do the work yourself. It can be grueling, time consuming, and mind blowing work and the doctors don't have time to do it.

Only garylouisville knows what to do
Posted 1/6/2015 9:40 PM (GMT -7)
I have been frustrated and emotional often lately myself, bellski. It's tough to never be able to predict how your body is going to feel on a given day, especially while flaring. It's hard to just be in remission at times, knowing a flare is just waiting to rear its head when and wherever.

I've had a lot of stress on top of my UC for the past 5-6 months. A lot, if not all of it has been out of my hands and out of my control. I've just had to roll with the punches. I think that's what life is - coping with life's harsh realities with a level head and perspective. I don't know if it's as easy said as done, but it's probably the way to go.

At some point, these issues that are getting us down go away - either naturally or through work - and we appreciate the good times more.
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