Hi everyone another new member here

[joe1984]

hi everyone another new member here

Hi, I am Joe and I am 25 yrs. old. I was diagnosed with Crohn's Disease shortly before my 20th birthday. When I was first diagnosed I wasnt sure what was going on. They did surgery and I thought I was fixed. Boy was I wrong! I went about the next 3.5 yrs. with very few problems. I was in near constant irritation, not pain but close, and had very frequent trips to the bathroom. Other than that no real problems to speak of. Then all of a sudden things seemed to change. I have been admitted to the hospital 6 times in the last year for a total of 39 days and have had 2 "false alarms" where I went to the ER but got sent home. I am now in constant pain but I am dealing with it pretty well. So thats my story.

 

[seaofdreams]

Welcome Joe, it sounds like you're having a really hard time with things. I hope you'll find this forum as helpful and supportive as I do
What medications are you currently on?

 

[joe1984]

I personally think I deal with it pretty well but I really dont have alot of others to compare to. I am currently on remicaide 5 mg/kg and prednisone 40 mg from an 80 mg taper. I currently do not take any pain meds though I am heading that way as fast as I can. I really feel blessed most of the time that it isnt worse as funny as that is.
there are alot of people that are alot worse off than I am and those are the people that I feel truly sorry for

 

[DustyKat]

Hi Joe and :welcome:

Good to see you here. What were the "false alarms"? So the Pred isn't doing anything for the pain?

Sorry about the questions! Loads of info and support here for you so I hope you stick around. Welcome aboard!

All the best,
Dusty

 

[joe1984]

Thanks to both of you for the warm welcome and I will definitely stick around. The false alarms were massive sudden onset pain and vomiting that were apparently nothing the first time confirmed by a single xray and a feeble attempt to get ahold of some drugs to feed my addiction the second time although a drug test that i requested to prove my point that I hadnt taken anything was not relevent. I still do not know what they were as it felt exactly like the pain that usually lands me in the hospital starving for a week.
About prednisone. I hate it. It does nothing to ease any pain it just makes it a different kind of pain less crampy more of a sharp pain.

 

[Dexky]

Hi Joe and welcome!! What was the surgery that you had? How much was removed? If the docs have your med. history, I can't see how they could dismiss your symptoms so easily!!! See ya around!!

 

[joe1984]

as i was told a substantal amount removed on both sides of the appendix they called it a lower q4 bowel resection. I really need to find out the exact footage removed and guess I need to get the surgeons notes on that

 

[Lisa]

Have you been checked for kidney stones by any chance? That is what landed me in the ER a few years ago now.....2x in one day as the Doc thought it was heat exhaustion at first!

 

[Crohn's 35]

Hi Joe :welcome: to the forum. I know you think you are not as bad as others but having any kind of pain is not easy for everyone to deal with. It sounds like you may have a stricture, cause onset acute pain is usually from a blockage and could be from scar tissue or inflammation. I had 2ft total taken out in the Ileum, and I am on a low dose pred for now.

Remicade should be working for you, or maybe the dose may need to be tweaked. The Prednisone levels should be helping but if it is scar tissue, it may not help. I would think a colonscopy would be in your very near future and find out what is going on in there.

As mentioned kidney stones are previlent in having resections, I have four of those suckers and they got 4mm big and never knew! I hope you are a water drinker cause if your not , you should start. I hope you get relief soon. Prednisone robs your body of calcium so I am hoping your are on good amounts of calcium and Vitamin D3. Good luck, glad you found us! Let us know how you make out ok?

 

[girlygirl]

Hi Joe,
Welcome aboard! This forum is awesome, a great support system, and filled with many knowledgeable individuals who care! Glad to see you here! The search function is great tool!! I've come to love this forum, and it feels like a family!! As i'm sure you know its difficult to explain the whole IBD/CD/UC to others who have no idea.
Best Wishes for you!!

 

[Jennjenn]

Welcome

 

[Astra]

Hi Joe
and welcome

Just to concur with Pen about having a scope?
Sometimes if we taper the Pred too fast before it's had time to heal can cause recurring pain, might be an idea to up the dosage again and start over.
glad you found us, hope you stick with us, lots of friends here for you
lotsa luv
Joan xxx

 

[joe1984]

thanks to everyone for all the welcomes and to everyone that has said something about the scope you are spot on. having yet another one at the end of next week. I have been checked for stones and luckily dont have them. I have been through alot with the prednisone and that is what actually brought me here as I found it while I was trying to find out why it wasnt working this time and it had so many others