Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Bless your heart , thank you! I have a Walmart here and will pick some up the first chance I get! The free sample sounds good too... free is always my favorite price for sure, lol. Big hugs to you and everyone. Without all of you I would feel so alone in all of this. Hi ,I am not the expert here--Jeff is, but I have some experience with management of diarrhea.I use Konsyl. fiber and it works for me. It is really amazing as it helps both constipation and diarrhea [and you'd think fiber would be the worse thing for diarrhea, but it is not.]Here is a link. The stuff is more expensive than the more popular brands which often contain sweetners. But it goes a long way. Just use a teaspoon to start and see if it helps. Make sure to drink a full glass of water as a "chaser". http://www.konsyl.com/health-benefits/treat-conditions/crohns-disease-and-colitis.htmI get mine at WalMarts. They have the best price on it. It also helps to lower cholesterol levels...an added bonus. Note-- you can get a free sample on the above website. I hope you feel better soon!Love,http://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks!Donation Information From: Jstorms12aol <Jstorms12aol>Subject: Re: Re: Teen Outsmarts Doctors In Science Class (Cro...To: erythema_nodosum_Group Date: Wednesday, June 17, 2009, 12:28 AM Thanks so much Jeff, but I have a couple of huge stumbling blocks. The major one being that I am so sick that I literally have a hard time even making it 3 blocks to the post office. So having to go to a different city is just short of impossible. I have had to cancel several trips to the doctors just recently because of them being over 60 miles away and my physical illness making leaving the house impossible. I also have severe degenerative disc disease which, when thrown into the mix, doesn't help. In the past (for other reasons) I have gone to the University of Washington Hospital. It's a teaching hospital. Both experiences were horrific. I think you are right on target with having to find the right doctor. That would definitely have made a difference. I believe that there is a teaching hospital in Portland (I live in Oregon now), but I am a good 2 1/2 hours away (I'm half way down the coast) and would most likely have to stay the night, if I actually made it that far, which I can't afford. I am just soooo frustrated! I can't even leave the house unless I have the portable barf bag and know that I can make it for 'x' amount of time away from home because of the diarrhea. My rheum dr says that I don't "fit" either Lupus or Crohn's, but he leans towards Crohn's. What the heck?! And now all he is doing is running the same test over and over again with months in between. But I am a little hopeful since you mention the GI doctor. I just started seeing one and he had me tested for Zollinger-Ellison syndrome because of my gastrin levels being bad. I just got the results today and thankfully it was negative. Next Tue. I go for another endoscopy. Jeff, if you, or anyone else has a clue of how I can get the doctors I have to get on track, I think that's what I need. I've read everything that has ever been posted here for the past year and a half. That's when I got the EN. And that's when I began my search for the underlying cause, which I believe is what's going on in my particular case. Thank you with all of my heart for your help and I will see what I can do about the teaching hospital. I have to keep a positive thought or I'll loose my mind! In a message dated 6/16/2009 8:08:09 P.M. Pacific Daylight Time, the5berks writes: jennifer,yes, i have one very good suggestion. this is what worked for me. go to a medical teaching hospital. i went to the university of michigan medical center. but there are several very good ones. mayo clinic and also cleveland clinic to name a few. yah, there can be "not so good" docs at these places too, so you have to ask around. don't be shy about it, believe me.now mind you, i had crohns for 3 years and went to many doctors and many different specialists until i went to u of m and actually made my first appointment with a rheumy. she was an intern there and i was not in her office more than 5 minutes and she had me signing up for a full exam with a gi doc. it was a good thing i had such a wonderful doctor in her. things rapidly deteriorated after that, with the cd and the pg.jeff,pg,cd>> Hi all,> This is EXACTALLY what I am going through! It has now been one year > and all my FIVE doctors want to do is re-run the same tests over and over > again! They always turn out the same... showing that I have an autoimmune > disease. So any suggestions on what I should do since nobody is listening > and I keep getting sicker and sicker every week? I am so frustrated. > Thanks,> Download the AOL Classifieds Toolbar for local deals at your fingertips. Download the AOL Classifieds Toolbar for local deals at your fingertips. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 I took Citrucel for years at night before I went to bed which helped control diarrhea and constipation. I was diagnosed with Crohn's in 1976 and had occasional flareups over the years but nothing serious. Then two years ago I had emergency surgery for a blockage and they removed about a foot of my colon. Since since I have been taking Pentasa and I also take an orange flavored powder called Cholestyramine in the morning. The initial prescription was to take it twice a day but I only need it once a day and it has helped more than any other medication they put me on after the surgery. I really haven't had any problems at all. The medication is mainly for people with high cholesterol but it has such a binding effect that they have found it useful for patients with chronic diarrhea. Also I was diagnosed with EN 8 years prior to being diagnosed with Crohn's. I saw a similar post recently. I thought it was just a year or so before the Crohn's diagnosis but looked up my records today. I currently believe I have EN and go back to the doctor in two weeks. I had strep throat two months ago and that may have been the trigger, although it only started about a month ago. Ginger > > > > Hi all, > > This is EXACTALLY > what I am going through! It has now been one year > > and all my FIVE > doctors want to do is re-run the same tests over and over > > again! They > always turn out the same... showing that I have an autoimmune > > > disease. So any suggestions on what I should do since nobody is listening > > > and I keep getting sicker and sicker every week? I am so frustrated. > > > Thanks, > > > > > > Download the AOL Classifieds Toolbar for local deals at your fingertips. > Quote Link to comment Share on other sites More sharing options...
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