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Oh the pain!!!! I can't take it.... Plus I'm not being treated!!!

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Crohn's Disease
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Posted 10/12/2012 5:06 PM (GMT 0)
I need help- somebody please. I have tested positive for
Crohns disease through the blood test. Then in 4 or 5 Colonoscopy
procedures there is evidence of "non-specific" Colitis.
Both of these illnesses run in my family. So I wasn't surprised years ago to hear these results. I was surprised however when
not one GASTRO would treat me!!!!!!!!!!!!!! They simply said
it was not Crohns in the Colonoscopies and it's non specific Colitis so they send me away.
I do get Librax from my Rheumatologist b/c I have Ankylosing Spondylitis and Osteoarthritis (very severe the Doc said for woman of 35).

Anyway, today I am flaring up and the pain in my lower right side
is so bad I can't get comfortable. I don't know what to do. Nothing
is working. I have 3 dogs and no back yard. They have to be walked, but my husband isn't going to be home until late tonight.
So I am worried about that on top of everything else. *Sigh.

I do have an appt with the Gastro Department at Hopkins here in Baltimore Maryland, but not for another month.

Does anyone have ANY SUGGESTIONS THAT they have found that work for them for the pain?? Thank you SO VERY MUCH!!!
Jules
Posted 10/12/2012 5:19 PM (GMT 0)
Heating pad does wonders for me, and rest. If that doesn't work, then its off to pain med land.

If its severe then you may consider a trip to the ER. I am sorry for your situation and do not really have any other knowledge to help you with.
Posted 10/12/2012 5:23 PM (GMT 0)
Thanks so much for responding! Just helps to know someone is out there. I am doing the heating pad now and just trying to breathe
yoga style. LOL.

I did take a pain pill , but I also have SEVERAL other illnesses that
I need those for so I wish I hadn't had to do it, but oh well.
I PRAY it kicks in SOON!!!!!!!!!!! It's difficult to believe sometimes how badly something can hurt and we're still alive experiencing it.
:-/

Thanks again!
Take care and I hope you enjoy your weekend.
Posted 10/12/2012 5:29 PM (GMT 0)
Have you tried any dietary mods to see if they will help?

I don't understand the whole thing of finding inflammation in the colon and then refusing to treat it. It just defies explanation.
Posted 10/12/2012 5:36 PM (GMT 0)
Kazbern,
yes it def. does defy all explanation doesn't it!!!! That is why
I now have to go to John Hopkins after seeing all the Gastro DRs
in town b/c they will not treat it. :-(
Posted 10/13/2012 12:58 AM (GMT 0)
I agree with kazbern; that's just weird.

There's a minority who can't get a definite diagnosis of Crohn's or UC because their colitis shows features of both diseases. So they get a label of Indeterminate Colitis instead. Maybe try printing out something on IC from a reputable medical site on the internet and taking it along to one of your doctors?

(It's possible to have colitis which isn't Crohn's or UC, too, to be fair: microscopic, ischaemic, infectious, etc. However, IBD is by far and away the most common cause of colitis, especially in folks under 50. If your doctors continue to proclaim it's non-specific, then I'd ask what would make it specific and, thusly, treatable.)

Or, better yet, just hand them a copy of this article and ask them to define their terminology; they'll love you for it, no doubt :p

www.ncbi.nlm.nih.gov/pmc/articles/PMC1770777/
Posted 10/15/2012 1:29 PM (GMT 0)
Yes, isn't strange?? It's so sad that these local drs will NOT HELP ME. I am so lucky to have gotten an appointment with Johns Hopkins to see a Gastro there.

I am interested in hearing more about this: Indeterminate Colitis
that you mentioned..... Do you know more or does anyone else
know more about it???

Niceoftea: This information here that you stated is very interesting and helpful! Thanks so much. I will look into this:

microscopic, ischaemic, infectious, etc. However, IBD is by far and away the most common cause of colitis, especially in folks under 50. If your doctors continue to proclaim it's non-specific, then I'd ask what would make it specific and, thusly, treatable.
Posted 10/15/2012 4:52 PM (GMT 0)
Have you tried changing your diet?  Just something simple as eliminating certain foods can make a world of difference.  Read the book "Breaking the Vicious Cycle"  It gives you a wealth of information on how diet change can sometimes put you in remission.  It does not always work for everyone, but if you don't try, you will never know. There are a lot people on this site that have had great success with the SCD diet, so you have a wealth of info to ta ask questions from here.
Posted 10/15/2012 7:46 PM (GMT 0)
I would also call Hopkins and ask leave a message for the doctor's nurse (the doctor your scheduled to see) and say if there's anyway she/he can work her/his magic and get you in earlier - if there's a cancellation or something - that you would be most grateful. I find that nurses are often the be allies to have in these cases!
Posted 10/16/2012 10:54 PM (GMT 0)
hi Everyone,
I went to the ER last night and found out it's DEF COLITIS
and not Crohns.. However, they put in a quarantine/isolation
room b/c they thought it was infectious and then once I left the
ER station everyone on that other floor treated me terribly.
Including my PCD that came to see me. He kept shushing me and
not letting me tell him that I was suffering the worst from the
joint pain from Ankylosing Spondylitis , Osetoarthritis, and herniated discs.
So, It was a huge nightmare and dissapointment. :-(
I cannot catch a break when it comes to my stomach issues....
sigh*
Posted 10/17/2012 2:47 PM (GMT 0)
the colonscopy I had did not show CD,I was the small bowel follow through that did show it. You have convinced me not to go to ER for my pain, and my gastro doesn't have any openings to see me this month....THIS SUCKS!
Posted 10/17/2012 3:14 PM (GMT 0)
Well I think the ER is very HELPFUL. It was just the Isolation
unit they put me on for something like Colitis that pissed me off.
Not to mention the nurses on the morn. shift were just beyond
nasty and terrible.
Otherwise the experience at the ER and the early morn. nurses
was wonderful. I would have stayed at the ER had it not been
for the Isolation Unit they put me in. It made no sense to me and
they didn't know the answers and when they did, they couldn't
explain it properly.
BUT don't be afraid to go to the ER. I have always had a great experience at the particular ER I went to until that dam Isolation
ward. lol

Today I am dying in pain. I don't know what to do. I cant stop
going to the bathroom. I discharged myself against medical orders
b/c of the behavior of the nurses and my DR "shushing me" when I was trying to ask questions. Otherwise I will admit I should I have stayed, b/c I am paying a severe price for it!!!!!!!!

Hope you are ok!!!
Take care and I hope to speak with you soon,
Jul
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