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In need of a Doctor that specializes in UC

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Ulcerative Colitis
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Posted 1/6/2011 3:18 AM (GMT 0)
I'm 30 years old and got diagnosed with UC in 2006. Being my first flare up I can honestly say is was really bad. I got to the point where I was only eating saltine crackers and drinking water for about a month and a half, I had diarrhea, vomiting, blood in my stool, horrible stomach pains and lost like 20 pounds. My first Dr helped me with the diagnoses, I became lactose intolerant and he then gave me I was in remission for about a year and then started having a lot of blood in my stool to the point where I thought I was hemorrhaging, so I went back to the doctor and he basically said that with flare ups that it was normal and that he couldnt do anything about it. I found another doctor and he helped me find out that pentasa was the wrong medication to be taking at the time and put me on Lialda which helped me a lot. so I then again was in remission for another 3 years until about 2 months ago. I noticed that I wasnt having many bowl movements but having a tremendous amount of gas(horrible gas) I went back to the dr and he has put me on a NO SUGAR diet(which is so complicated to do, just about EVERYTHING has sugar) and a tablespoon of bran EVERY day(Im not on Lialda anymore). I drink about 80 oz. of water everyday ONLY water. but now my dr. just seems so laid back with my condition. I hate to be gross but my gas smells like death and when I do need to pass gas I have to be on the toilet due to the leakage that comes out along with it.

So I was hoping if anyone does read this and could recommend a GREAT dr. in the DC/MD/VA area along with any tips on what I CAN eat. it would greatly be appreciated.
Posted 1/6/2011 6:25 AM (GMT 0)
Hi & Welcome to Healingwell.

I don't know a GI in the DC area but I wanted to let you know that I can relate to all of your symptoms and I know how frustrating it is. I've had the terrible odor and leaking, the hemmoraging blood, nausea, diarrhea, pain... it is typical of a flare. The worst is the urgency and frequency, I remember barely being able to leave home because I was constantly on the toilet and the more I ate, the more trips I took to the bathroom. I am sorry you're not feeling well. I hope you find a good specialist soon so you can get treatment. For me, diet hasn't been too effective but Lialda/Asacol and rectal medication can defintiely help stop the inflammation. How many Lialda tablets are you taking? Any rectal meds?
Posted 1/6/2011 12:49 PM (GMT 0)
Hi, and I'm sorry for your troubles!
I'm not in the DC area, either..... hopefully someone else will be and will answer your question about doctors.

I generally have that horrible gas preceding and during a flare, and the leakage would indicated that you have some inflammation going on in there.
I would ask for Rowasa retention enemas.... the inflammation starts at the rectum and spreads upward in UC, and the pills aren't effective all the way to the bottom, so.... hitting the UC from both ends helps a lot of us.

We are all so different in what helps or hurts us; a journal would be a useful tool. I eat softer foods while flaring: chicken or fish mostly, well-cooked veggies, and pasta or rice. I eat a lot of homemade yogurt (not sweetened).....but we're all different.

Welcome, again!
Posted 1/6/2011 2:03 PM (GMT 0)
I found new doctors when I moved at ratemds.com. You are in a good location for specialists, perhaps one that focuses on UC.

Your current doctor is not treating you well if he isn't prescribing Rx. No sugar is a very good idea however but you need Rx also as well a taking a good probiotic daily (VSL#3 is what I take). Diet modification gave me remission but you need all the weapons to use against UC, that means Rx, probiotics and try the Specific Carbohydrate Diet and see if that helps.

Best of luck.
Posted 1/6/2011 4:01 PM (GMT 0)

I also am not from the MD/VA/DC area but I am sure that someone will definitely come along any hour and point you in the right direction.  I just wanted to reiterate the obvious.  You are definitely in a major flare and one of the hallmarks in deathly smelling gas.  My wife wouldn't even go into the bathroom after I had used it for about an hour. 

I am not trying to gloat but now that I am in remission the bad gas has dissapeared.  Yesterday I used the bathroom for a bm for about a solid 30 mins and got out.  2 minutes later my wife used it and didn't say a word.  No bad smell at all.

All I am trying to say is if I can do it there is hope.  Be patient and someone will come along and give you a name you can use.  I also totally agree about using the rectal meds along with the oral, they will keep you in check.

MyUC

Posted 1/6/2011 4:16 PM (GMT 0)
Hi and welcome.

Unfortunately, a doctor isn't going to be able tell you what you can and cannot eat...diet affects each of us differently. I can eat everything that I did prior to getting UC (I have never been able to eat MSG or artificial sweetners, so am even more careful to avoid them now), but there are some people who have to make diet changes to keep their UC under control.

Why are you not on Lialda anymore? You really should be on some sort of medication to treat your UC, even when in remission.
Posted 1/6/2011 5:39 PM (GMT 0)
If a medication helped you go into remission before then why are you not on it again ? Tell the doctor you want the same prescription you had before. If he can't do that or doesn't want to google GI doctors in your area (with zip) and move on.
Posted 1/7/2011 4:55 AM (GMT 0)
Hi. I lived in VA for a few years. I really liked Dr. Prosky. Beleve he has an office in Arlington(or was in Fairfax), and also Annandale. I recall his nurses were excellent and took the time to call me back when I had a question/emergency.

Dr. Martin G. Prosky, MD
3301 Woodburn Road Suite 107
Annandale, VA 22003
703-876-0437

Would NOT recommend Dr. Morton, also in Annandale. He diagnosed me with Colitis, gave me a few Rx's, and didn't explain what a chronic disease was. I had NO idea this was life long until I got home and looked online.

Dr. Prosky also had a nutritionist in/associated with his office who helped me, Lise Gloede, here is her website: http://nutritioncoachlise.com/

From what I've learned everyones diet is different, what works for me may not work for you. That being said back then I was on this diet:
no insoluble fibers, caffeine, alcohol, dairy(butter was ok, cream/milk/cheese - no!). Kept me in remission for a very long time.

Now a days I am seeing a TCM(Traditional Chinese Medicine) doctor, to see how this does. I'd like to be OFF of meds. That's probably the only knock I have on Prosky, is he is pretty western medicine based.

good luck to you
Posted 1/7/2011 4:57 AM (GMT 0)
oh, I should mention I definitely stick away from high sugar foods/high fat, and anything fried. All these seem to set me off. I agree, it's not easy, as so many things have sugar. But really, sugar is just evil. Will you be at 0% sugar, no, but just try...I bet you'll feel much better
Posted 1/11/2011 1:39 AM (GMT 0)
notsosicklygirl: The urgency of needing to use the bathroom ASAP is what Im going through now. Im not on any medication right now. But I have a follow up appointment this thursday and hopefully the doctor will give me some.

songlady: thank you for the tips, I think I will start my food journal it sounds like a great idea. I have cut out red meat from my diet for like 4 weeks now and just strictly eat chicken, pork, turkey or fish.

imagardner2: Thank you I will also look into that website

myuc: I will definitely look into asking my doctor this Thursday for rectal AND oral meds. Thank You.

fruitgirl: The reason Im not on Lialda anymore is because in early 2010 I was feeling a little better and noticed that I needed a refill on my pills but had to go through the hassle of getting a referral from my general dr. in order to see my GI dr. So I let time go by. my mom got really sick soon after and shortly passed after that. All my energy was put into coping with her loss and never thought of going back to my GI. So here I am trying to get back to feeling better its just unfortunate that I had to go through a flare up to realize I need to take care of myself.

dsm4life: very true.

beachlife: Thank you so much for the info, I went on to the nutritionist' web site and unfortunately my insurance doesnt cover it. so I will look into the dr and hope he does, Thank you again.
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