3 years and no change

[crystal5520002000]

I am about to go for my second colonoscopy, my first came back with inflammation of the bile ducts I was told that I had enteritis colitis, still not so sure what that is. The gastro doctor gave me entocort ec and said it will go away after the 6 weeks. yeah sure that happened. I have taken other drugs nothing to strong lotomil, bentyl, and a couple others I can't even remember. I have not had a normal bm in 3 years, always pure liquid and food. My vitamin levels have been falling off so I now take 9 supplements a day and not sure if that is even helping me. I am always so tired, I do stilll work full time but it is getting harder to get out of bed. I am a mother of two and somedays I am so exhausted after work I can't really get that quality time with them. I am in constant pain, constantly fatigued, and I am so tired of being of tired. The doctors won't give me steroid treatment cause they think im too young, I am 28 by the way, and they won't give me any pain relief in fear of addiction. I am at my wits end, hopefully they do something after this colonoscopy i am positive that the initial inflammation has not gone away but I am scared as to how it is going to turn out after living like this for 3 years. Do you thing that the longer this goes on the more damage is caused to your intestines?

 

[Crohn's 35]

Hi Crystal and welcome to the forum! Colitis and Crohn's are hard to detect even if you have been diagnosed with one, I know just went through it. Colitis is usually in the large bowel and Crohns is from mouth to Anus and lots of other IBD's too. I find that strange they wont give you anything for pain.. if they had it they would understand. Two things you can try if you are in lot of pain, one is Tylenol"1's with Codeine but you have to ask for it at your pharmacy. Another for pain is Back and muscle pain but in Acenominphen, not asprin or Ibuprofen, too hard on he gut.

You can be on short term steroid treatment either by Entocort (mild to moderate) or Prednisone to get the flares and pain undercontrol. I know you are young and I see their point. At the very least either Pentasa or Asacol, for inflammation. Hopefully this colonoscopy can help the doctors right there to make a decision to put you on some kind of treatment. Yes, if left too long, it can spread or become inflammed more. We are not doctors but we have alot of experiences and you should not be suffering. Having alot of D will cause you too lose a host of vitamins you maybe lacking.

Good luck with your scope and let us know what happens. Big hugs to ya~

 

[crystal5520002000]

Thank you for the post back it's nice to know that I am not all alone when it comes to this

 

[orchard archer]

Hi Crystal, I see some people get pain meds.
The GI Specialist clinic I normally see Do not Believe in Pain Meds Because Narcotics Can Cause Constipation and Potential Addiction.
My General Physician Gives me A Small amount of Pain Relievers after I explained my situation to him, Better than None!
Your Sure are Strong, Going to Work and dealing with everything.
It pains me to see your situation.
I wish you all the best and hope you get some relief soon.
Ryne

 

[CrohnsHobo]

I fought the pain for many years and last year I broke. I asked my GP to refer me to a Pain Management Specialist. Instead she gave me some Vicodin. After about a month of that and no relief she upped it to Percocet. Those made the difference. When it was really bad I was taking 2-3 a day.

Now I only take 1 at night, not for pain but to help get me to sleep. Didn't find them addicting at all. But everyone is vastly different. Surprised they wont give you steroids. I first took them at 17 years of age.

 

[alexandros8]

Yeah my first go at steroids was when I was 19- and it put my condition back to a manageable point. I do think (but I'm not sure) that the longer CD is not treated the worse it can get, if its active and not in remission. I hope that this colonoscopy shows some better results so that you can get the meds you need. Good luck!

 

[ameslouise]

Hi Crystal - You must be at your wit's end after 3 years of the pain and suffering. It might be time to seek a 2nd opinion if you are not happy with your current doc's plan of action after your colonoscopy. It's hard to believe they haven't given you anything for 3 years!

Good luck with the scope. Please let us know how it turns out. - Amy