HELP.....is it crohns or colitis????

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huntersmom
Regular Member


Date Joined May 2009
Total Posts : 50
   Posted 5/12/2009 7:28 AM (GMT -6)   
I am a 29 yr old single mother of 2 amazing little boys and have been fighting one of these diseases for almost a year with no period of remission. I have been on asacol....pentasa, 40 mg of prednisone, canasa supp, and hydrocortisone enema....NOTHING is working. I go back to the dr today because I am in such pain and the need to rush to the bathroom is insane. I can barely get up and get ready for work and take care of my kids...in fact this morning I couldn't do either my mother had to get my kids ready......I don't know what else to ask...do I need to be hospitaized? I am having an average of 6-9 bowel movements a day...some with bowel and all with blood. All my blood wok has come back normal except a slightly elevated red blood cell count...(not sure what that means) and the dr's don't seem very concerned....can somebody please help?????/

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 16289
   Posted 5/12/2009 7:36 AM (GMT -6)   
Did you have a colonoscopy to see what part is inflammed? If you can see where you're inflammed and the severity, you may be able to tell whether it is chrons or colitis and have a better plan of action. It is hard because it sounds like you have tried a lot of the medications that they regularly give people who are flaring and they haven't helped. Have you tried limiting your diet? I have tried and it's never helped me but a lot of people have luck with special diets and different types of natural remedies.
 
Maybe you could use a higher dose of pred? Did you taper off the pred too quickly? Did it help at all? I am not sure if I would go to the hospital, well, I wouldn't because I don't have insurance but if you're in a lot of pain, it may not be a terrible idea although I see a lot of people say it's more useful to get an appointment with a good GI.
Diagnosed with mild proctitis in March 2007: Treated with Canasa 2x Daily
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)


huntersmom
Regular Member


Date Joined May 2009
Total Posts : 50
   Posted 5/12/2009 7:44 AM (GMT -6)   
I had a colonoscopy done and at first they said that they think it is confined to the rectum. But I hve been treating it that way for almost a year with no luck so the next GI doc I saw said it could possibly be crohns because I have also developed slight arthritis in my hip and will get mouth ulcers. I am very concerned with what is going on. I am still on 40 mg of prednisone along with 4 pentasa/2x a day, canasa supp in morning and hydrocortisone enema at night...yet no relief...in fact I think it might be getting worse!

Zippy123
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Date Joined Feb 2009
Total Posts : 735
   Posted 5/12/2009 8:36 AM (GMT -6)   
Were you bleeding and having this bad of a problem before starting on any meds?

I say this because I tend to react in a bad way to all the meds I took for colitis as they made me bleed and cause lousy side effects as full dosage.

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 5/12/2009 8:42 AM (GMT -6)   
Unfortunately there is no definitive test to rule out on or the other. I would ask for a CT of a small bowel follow-thru to test for ulcers further up from the colon. Again it's not conclusive but it is one more piece in solving the puzzle. I think you might also want to look at other drug regimes and push to get off prednisone. Prednisone should not be used for long term (more than 4 months) treatment. Have you talked about immunosuppressants or biologics with your GI? Arthritis and mouth sores aren't necessarily indicative of Crohn's.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


fruitgirl
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Date Joined Feb 2009
Total Posts : 7150
   Posted 5/12/2009 10:45 AM (GMT -6)   
I agree with everything Sue said. I think you should probably also have another colonoscopy to see where the inflammation is and see if it's spread. There are a lot of other meds to try. Go to the ccfa.org website and do some reading...they have a lot of good info about meds, which are pretty similar for Crohn's and Colitis.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/12/2009 10:56 AM (GMT -6)   
Have you gotten a second opinion from another GI? There are ways to tell the difference between CD and UC, with CD there will be skipped patterns of inflammation (healthy tissues in between inflamed) with UC the entire area will be inflamed.

Do you have any anal involvement? strange fleshy looking bumps on the outside of your anus that may resemble a hemheroide? UC is limited to affecting the colon/rectom only, where as CD can afffect the entire GI tract from the anus (the anl skin tags/bumps I was referring to) all the way to the mouth. Symptoms of CD and UC are pretty much the same, CDers don't tend to have much bleeding issues unless their CD is affecting their colon/rectom area. Extraintestinal manifestations, like arthritis, eye inflammation, skin issues, mouth sores, ect can happen with both UC and CD. Fistulas are also more common to CD, of course not every CDer gets them though.

Did your doc do any small bowel tests and stool tests?

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


notsosicklygirl
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Date Joined Dec 2008
Total Posts : 16289
   Posted 5/12/2009 11:33 AM (GMT -6)   

I agree with what everyone said

Consult a new GI for another opinion. You should also get stool tests to check for bacterial sources. You would benefit from another colonoscopy. It doesn't sound like they were very accurate in describing your condition. How can it "seem like" it is confined to the rectum? either it is or it isn't. If it is just in your rectum, it should be treatable with rectal meds. Since it is not, it leads me to believe that it may extend further up. If the meds you're on aren't working you may want to consider immunosuppresents or biologics but first make sure it is not caused by something bacterial.

Did your condition begin mild and get worse? Was it always pretty much the same? I ask because I began with mild proctitis (colitis in the rectum) and it spread. After it spread, my symptoms became completely unmanagable. Luckily I have been able to control them with 5ASAs.

I think a lot of us have joint pain. It is common with UC and Chrons. I get canker sores once in a while too, I wouldn't think much of it unless I had multiple and they were happening often.

You could try a diet. The specific carbohydrate diet seems to have helped a lot of people. It did nothing for me personally. shakehead

Maybe you could increase the dose of 5ASAs? I take 3pills 3x a day.


Diagnosed with mild proctitis in March 2007: Treated with Canasa 2x Daily
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 5/12/2009 5:21 PM (GMT -6)   
I'm going to have to agree with everyone else here. The only way to differentiate the two disorders is by colonoscopy and biopsy (to determine the extent of inflammation). Though, if it's confined to your rectum, it's probably UC. A lot of UC'ers get joint pain and mouth ulcers.

I suggest going back to the doc. In the meantime, you may want to try a low-residue diet and/or cutting out certain substances to see if that helps at all. A low residue/low fiber diet should help with pain and the number of times you go each day, as you're passing less through the colon and therefore there's less strain on it. There are plenty of lists on the internet telling you what you can and can't eat on it, but generally refined grains (white rice, white bread, pasta), bananas, applesauce, well cooked tender meat (esp chicken or fish), and very well cooked or canned fruits and vegetables are okay to eat. Also, a lot of people with bowel diseases and disorders are sensitive to the following substances: lactose (dairy), fructose(soda and many juices, read labels), artificial sweeteners, caffeine, and alcohol. Try cutting these out to see if that helps you any.
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 5/12/2009 10:11 PM (GMT -6)   
I don't have any advice to add but I wanted to say my heart goes out to you. Being a single parent is hard enough but add to it your pain and symptoms and you must be utterly exhausted. I hope you find relief soon
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
2nd opinion March 2009 - diagnosis UC and not Crohn's
 
currently on 2400 mg Asacol & Rowasa 1x day


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 5/13/2009 3:00 PM (GMT -6)   
Malkavian said...
I'm going to have to agree with everyone else here. The only way to differentiate the two disorders is by colonoscopy and biopsy (to determine the extent of inflammation). Though, if it's confined to your rectum, it's probably UC. A lot of UC'ers get joint pain and mouth ulcers.
Actually....if it's limited to the rectum and severe....could be more CD related than UC....that also includes joint pain and mouth ulcers.
 
The treatment is pretty much the same, however.....and immunosuppressants/biologics might have to be considered.
 
Stress of the day-to-day survival with family can certain exacerbate one's symptoms.....I know I wouldn't be able to deal as effectively as many can....that's why I have no kids, to be honest on that matter.
 
q


*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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