Well here I am on the edge.

[ittybitty405]

HELLO!!

So a little about me I am a single mother of four whom recently had what they thought was UC but since my terminal iliuem and no response to treatment they have decided Crohn's.

I have been sick for over a year now, dropped from 130 to 94lbs. I stand 5'1

I am on treatment however nothing seems to end the nightmare mornings we all have..:stinks:

So I thought since I have no clue what to do now..well here I am:dance:

happy to be here, share and learn!

 

[Artificial]

Hi Ittybitty, welcome

Sorry to hear you've been sick for so long, have they decided on what treatment to try at the moment?

You should find some good info on here though! x

 

[ittybitty405]

I was on Budesponide (sp) when they thought it was UC.

I am now being tapered of of Predisone.
I take Zofran in the morning for the nausea odd feeling.
Pentasa four times a day.
Cipro
Flagyl
Zanex as needed. (not a fan)
I have a sleepingmed but I dont take it.

I have no support system at all..so im really interested on how to research and understand how to help myself. Its real hard to take so many medications I am 31 years old and this is the first time in my life I have ever gone through this.

I have been on mnay meds but none seem to really stop the gas, burning, cramps, and lose stools from stopping. I am however a very nervous person, I am sure that does not help.

Thanks for responding to me!

 

[xJillx]

Hi and welcome! I am sorry no treatment has helped your IBD. The medication you have been on is geared towards those with mild-moderate cases. Perhaps you need something stronger.

I suggest doing some homework in our Treatment Forum. Become familar with the many different options, and then reach out to your GI to see what he suggests you could try next.

 

[maria]

Your story sounds JUST like mine I too am a single mom of 4. Drs don't know if I have uc or crohns. I'm also 30..But hopefully your medication will work for you.

 

[bjeffrey]

Hi
You are not alone. There is a HUGE support Group right Here!

When was your last colonoscopy and CT Scan? Do you know what the results were?

If you feel so sick and losing weight as you stated, have you been offered to be admitted or dehydration and nutritional replacement? Remember what you "put in is what you are gonna get out". Sugar, white rice and Coffee have no nutritional value. I eat to live rather than living to eat:>)

Giving you Cipro and Flagyl at the same time, maybe overkill to your GI bacteria, so nothing absorbs or breakdowns..Pentasa, may or may not work, it really depends heavily on individual response. AND Prednisone , the WONDER Drug, is not working? After 20 plus years, on and off the drug, it stopped working for me, too. It is possible your dose was not high enough? It "most often" puts people in remission...

Research?
National Digestive Diseases Information Clearinghouse (NDDIC)
http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/#what
Diet?
http://www.breakingtheviciouscycle.info/

What has worked for me, is to seek out the best doctor in the area at a teaching hospital...know the protocols...read my colonoscopy and CT Scan results and well, over time, I am passionate about my disease and survived:>)

Best wishes. If I can help, please let me know....

 

[bjeffrey]

ask for Diphenoxylate/Atropine 2 tabs up to 4x a day prescription. "it soaks up the un-absorbed liquid" most often...its like otc imodium