Discouraged CD Individual

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dadof3
New Member


Date Joined Oct 2007
Total Posts : 12
   Posted 10/13/2007 5:33 AM (GMT -7)   
 
  I was diagagnosed with Crohns Disease when i was a teenager went into remission, had another flare up and then was diagmosed with Ilietus, went into remission then had another flare up then diagnosed with Ulcerative Colitis, went into remission again and then had a 3 rd flare-up and then was then diagnosed with Ulcerative Proctitus. For the past 2 years i have not felt any better. I am currently taking Humira injections ( had a reaction to Remicade ), Lialda, and just finished up taking Prednisone.
 
   NOTHING SEEMS TO BE HELPING ME ! 
 
   I have tried numerous Drs. and is getting to the point that no matter who i see, i still have the same symptoms, no relief.
 
   I have lower abdominal cramping, diaharea with mucous and very rarely blood in my stool.
 
   I am a 50yr. old male getting very frustrated.
 
   Any suggestions would be appreciated.
 
   Thanx nono

mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 10/13/2007 6:44 AM (GMT -7)   
sad
Hello dadof3, glad to have you here. Everyone here can emphathize with your frustration and we'll try to help as best we can. Kinda sounds like the docs you've had over the years got together and decided to draw diseases out of hat and tell you that's what you've got! Sorry to make a joke but sometimes laughter is the best medicine. I can see why you are frustrated though, all of the treatments and still no relief. I also had a bad reaction to Remicade and had to stop after 2 treatments, ended up in the ER with partial obstruction. I just had my second dose of Humira yesterday and (knock on wood) it seems to be helping me. I am definately not an expert but doesn't the blood in your stool indicate colitis moreso than Crohn's?
Any veteran members with more knowledge please chime in! ;)
I hope you feel better soon dadof3, my thoughts are with you. Please take care and keep posting, we're here to help.
Marci C.
38 years old, dx with Crohn's disease March 2007, currently on Humira, Entocort and hydrocodone (for pain), and Effexor


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/13/2007 8:03 AM (GMT -7)   
There comes a time, when the meds stop working, and maybe you should start thinking about surgery. I've been through them all, surgery is always the last resort, but necessary if I wanted any kind of life.

Good luck and let us know what happens.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


dadof3
New Member


Date Joined Oct 2007
Total Posts : 12
   Posted 10/13/2007 9:01 AM (GMT -7)   
I want to thank everybody for their responses, but surgery never had crossed my mind. My present Dr. has given me a diagnose of Mild to Moerate Crohns disease mainl;y located near the rectum area.
My problem is that shortly after i eat something i have the sudden urge to go to the bathroom and most of the times very little of a movement occurs. I have thought of changing my diet to a low carb diet, but everything you read says that diet plays a little role in the disease.

What is your opinion on taking Probiotics ?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/13/2007 10:08 AM (GMT -7)   
Were you told you had ulcerative colitis or crohns-colitis? Proctitis is inflammation in the rectom from either CD or UC, ulcerative colitis is another form of IBD, just wanted to make sure there was no confusion with the terms you were using...regardless, probiotics are very beneficial for IBDers (either crohns or ulcerative colitis), a good probiotic is essential, the one I use with some success is primadophilus reuteri made by natures way (google for more info), the ones researchers have studied in relation to IBDers is VSL3, very expensive but known to put the majority of test patients in remission.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/13/2007 10:21 AM (GMT -7)   
Dadof3,

A good probiotic for people with Crohn's is called Florastor. My GI gave me samples, but you can get it from most drug stores. It is expensive, but my cousin who also has mild to moderate Crohn's said it really helped lessen her diarrhea...

It is always nice to try a natural remedy before drugs or surgery, especially if your Crohn's is not severe. :-)

xdeex
Regular Member


Date Joined Sep 2007
Total Posts : 42
   Posted 10/13/2007 11:31 AM (GMT -7)   
Hi dadof3.

I was diagnosed with Crohn's in 1994, and after years of countless meds and hospital admissions, that in Feb 2006 enough was enough and surgery was the only option I had.
I had 6 days to makeup my mind and I decided as soon as it was mentioned that it would be a yes.

My quality of life has definately improved.....no more pain, no more distress to myself or my family.
Wasn't a bed of roses at the beginning and took a while to get used to wearing a bag, but now I have adapted well and getting on with life... :-)


Hope you find a way to ease what you are going through.

Diane
Diagnosed Crohn's 1994, panproctocolectomy with ileo Feb 2006.


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 10/13/2007 5:17 PM (GMT -7)   
Hi dadof3 -- sorry you're having a tough time.

I know you suspect that diet doesn't play a role, but for me staying with a soft-ish, liquid (lots of soup), low-residue diet has really helped. It's not a perfect solution, but I really feel better when I eat that way and worse when I eat the "old" way. So for now I choose to feel better and don't really miss the old foods (soda, caffeine, dairy, nuts, raw veggies) at all. I have a problem with "false alarm urgency" (as I call it) too.

Check out some websites about diet and nutrition for people with CD or UC. Others on this site have had success with the Makers Diet. Lots of food/diet advice here if you're interested. I am in no way a diet-guru (if you saw me you would know this) but I do know that limiting what I'm eating/drinking helps me feel better day to day.

Good luck!
44 years old, newly diagnosed after an 8-day hospitalization in September 2007 but symptoms for several years before that.
Medications: Pentasa, Prednisone (tapering), Cipro, Prilosec.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004, taking Synthroid) and gall bladder surgery (1997).
Single working mom to three wonderful kids, ages 9 to 15.

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