I really need your suggestions out there.

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stymee
Regular Member


Date Joined Jun 2006
Total Posts : 28
   Posted 4/27/2007 5:25 AM (GMT -7)   
I will try to make this short.  Last sept I was diagnosed with Chrohn's, But I have ALL the Symptoms of IBS.  Dr tried me on some of the chrohns meds, nothing worked.  Moved here to Arkansas, NO gastro doc around, so my internal doc is trying to help.  I told him how when I seen the Zelnorm commercial it was me made over and I wanted to try it, since none of the CD meds were working.  So he put me on it.  It was wonderful for the bloating and yuck cramping, I just still did not go to the bathroom, well I did for the first week maybe.  But that stopped.  So now I consider myself a Diagnosed Chrohns person with all the IBS symptoms. 
OK now, they have taken Zelnorm off the market, has any one been on Zelnorm and switched to something else that works well like the Zelnorm that I can maybe suggest to my doc???????? I only have 7 days of my Zelnorm left. 
 

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 4/27/2007 7:15 AM (GMT -7)   
I know it's weird, but you can actually have BOTH Crohn's and IBS; they're not mutually exclusive.  If your GI did a colonoscopy and found inflammation and/or ulceration of a type that is indicative of Crohn's (as opposed to a much more minor colitis or UC), then you do have Crohn's and will always have Crohn's.  But, that doesn't mean that you might not go into remission.  All of your inflammation and ulcers might be cleared up just now.  And that's when IBS takes over.  Also strange is that some people with Crohn's are actually constipation-predominant.  Most Crohnnies have D all the time, but a few do have C all the time.  Or you may have IBS-C, and then when the Crohn's flares up, you go to having D. 
 
I'm sorry; none of that is very helpful or comforting.  I think a few people have tried reglan with minor success (it speeds up the entire digestive tract).  Somebody else (I don't think ever on Zelnorm) says she takes Miralax every two or three days to stay regular.  I assume you've tried the fiber supplements and prunes/juice?  After that, all I can think of to do is to use laxatives like aloe vera or the Miralax or something else under your doctor's guidance. 

stymee
Regular Member


Date Joined Jun 2006
Total Posts : 28
   Posted 4/27/2007 7:26 AM (GMT -7)   
It is strange because about 4 yrs ago it was like I was having "D" alot, then all of a sudden I went to never doing anything.  It is not uncommon for me to go with out a poop for 2 weeks. I did have the Colonoscopy and he said it was either chrohns or uc, but then the blood test came back 87% chrohns.  But Chrohns with chronic constipation, which in all may be alot like IBS and that is why I relate it so well with that.  I am going to research the meds that you mentioned, and my brother had mentioned yesterday that he heard aloe vera juice helps with that, so now I need to find it and try it.  Don't feel you weren't helpful, any bit of info anyone gives is ALWAYS helpful!

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/27/2007 7:33 AM (GMT -7)   
Hi stymee, Yes its true you can have both IBS and Crohn's and also from what I know, its not uncommon to have constipation with Crohn's. I take Miralax for about 3 years now because Zelnorm didn't agree with me and I am so much better. I also would consider fiber if I were you. You will want to start off in small doses and work your way up and increase your water intake but in time it really makes a difference. Chronic constipation can lead to problems like diverticulosis as well so fiber is extremely important. I hope you are able to find relief soon. There is another member here, pb4 that has both Crohn's and IBS and may be able to give you some more info although I believe she suffers more with D.
"Des"
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements


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hungry
Regular Member


Date Joined Apr 2007
Total Posts : 30
   Posted 4/27/2007 1:45 PM (GMT -7)   
Zelnorm worked for me, though, I still had to watch my diet. I have been off of Zelnorm for a month. I am really struggling but this is what has been prescribed for me.
amitiza 2x daily ( I can only tolerate 1 at bedtime though)
mililax
mylanta mixed with lidocaine to help with the GERD pain
daily enema
prevacid
zantac
senna

and unfornunately Reglan!
I don't recommend this for anyone unless you don't have ANY other option. Be very careful. Domperidone is available in Canada and is recommended over Reglan because it has less side effects. My doctors have told me that Domperidone wasn't approved in the US because drug companies were not interested in the research study for US marketing. It is an orphan drug but much safer than Reglan. Look into TD sydrome before you decide to take it. If you notice any involuntary lip smacking stop taking it immediately. It could be permanent. This is what I have been told to watch for.

I have been on an all juice diet to keep comfortable. It is horrible but much better than severe pain. I have also had to go to the ER 3 x for hydrations. If you have severe IBS-C you should talk to more than 1 GI doctor. They are all very different in their views. sad

stymee
Regular Member


Date Joined Jun 2006
Total Posts : 28
   Posted 4/27/2007 2:52 PM (GMT -7)   

I am on fiber, everyday, it doesn't help me go to the bathroom, it just makes it a little easier when I do.  I was taking a laxative once a week (milk of magnesia did nothing for me) but I was afraid I would get hooked on it making it so easy for me to go potty.

I don't have a weight issue so that is a good thing (although we would all always love to lose 5 pounds) :)

Right now until next week I have the Zelnorm, and nexium and metamucil.

I have read a bit lately on the Amitiza and think I might ask about that.

Sadly enough there are no Gastro docs here where I live, closest one is almost 3 hours away.  Hope fully we will be moving soon and that will put me in contact with another.  My internal doc is really trying to help me though, he has been wonderful and has actually done more for me that my gastro doc where we used to live.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/27/2007 9:26 PM (GMT -7)   
I have both IBS and crohns...I've had crohns for 16 yrs now and IBS for about 4ish yrs....with crohns or UC there is inflammation involoved in the intestines (with CD it can be from the mouth to the anus and with UC it's limited to the colon and sometimes involves the rectom).

There is also bleeding with IBD (either CD or UC) never bleeding with IBS unless it's from a hemheroide.

IBS and IBD symptoms can be very similar to one another when it comes to bowel frequency, urgency and even abdominal pain...they both can include mucus as well.

My GI told me to take a stool bulker with a mild laxative so I chose Prodiem (I'm in Canada) it's similar to metamucil and I've been taking it everyday for the last 4 yrs as he told me to take it daily for the rest of my life and it's definitely helped alot...I also had some minor issues with constipation from time to time with my crohns, but the Prodiem has helped with that alot too, among many other things related to my IBS and crohns.


:)

stymee
Regular Member


Date Joined Jun 2006
Total Posts : 28
   Posted 4/28/2007 11:39 AM (GMT -7)   

I have been on the Chrohns part, and it does give some good feedback, but like I said I am getting  a little more out of this site, because I go along more with the IBS symptoms, I am just looking for help, insight and a few more suggestions on what you all take for IBS, as I said I was taking the Zelnorm and it worked TERRIFIC and now it's gone, so I was wondering what else you all might take, maybe me along with my doctor and you and your suggestions we can find me something else to try.

Thanks! :)


hungry
Regular Member


Date Joined Apr 2007
Total Posts : 30
   Posted 4/28/2007 7:49 PM (GMT -7)   
hi, this is hungry. I have been off of zelnorm for a while now. I am trying to get it from other countries for now because otherwise I will be in the hospital. Call the FDA. Call Novartis. I call every other day and so does my family. They need to take it seriously that some people don't have other options. Have your doctor write a letter. Write a letter. For some people this is the only medication to work. I am going to use it with caution- i.e. get an ekg every year just to be sure I am not at risk.

stymee
Regular Member


Date Joined Jun 2006
Total Posts : 28
   Posted 4/29/2007 5:46 PM (GMT -7)   
What my doc did first on the zelnorm was call my insurance to find out what would happen if we got it from somewhere, the insurance said they would not cover it right now because it has been pulled from the market.....
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