Mental Ups and Downs

[PeninsulaLil]

Hi guys:

Been trying since October to get a(?) flare under control. Was having problems for at least 18 months before I got the Crohn's diagnosis in October 2009. I was on prednisone-- didn't do much. Then on Entocort which seemed like a miracle drug. I hadn't thought I would ever again poop just once a day and not be fatigued all the time. So I was feeling terrific and it's amazing how I just totally zoned out how awful I'd been feeling for 2 years. The last week of tapering off the Entocort I had an episode of horrible abdominal pain and vomiting. I was told the Entocort can build up stomach acid and was given Pepcid which totally did the trick. So for almost a month I have been just on maintenance asacol. Then yesterday, back came the abdominal pain and vomiting. I checked with doc and took the Pepcid late last night, this morning and a couple hours ago. I was doing just water and gatorade. Then tried a half cup of broth and crackers (which usually was a standard when I was flaring). Now I'm having stomach pain again.

Mostly I'm writing because of the emotional roller coaster that I am on. I don't know if this is a precursor to a flare or I just ate something suspicious. Today was the first warm day we've had all spring and I was in bed with the shades pulled or in the bathroom. I am feeling totally anxious and go back and forth between worrying about what might happen next and just feeling bloated and achy. Haven't thrown up since this morning but after the broth I am gassy.

Thanks for letting me whine! I don't think there's really anything else I can do at the moment.

Lilly

 

[dreamintwilight]

Sorry to hear about your trouble, Lilly! This disease is so unpredictable. Sometimes it's hard to tell if I'm coming up on a flare or if I ate a food that doesn't agree with me. I hope you get things figured out soon and you get to feeling better

 

[Pirate]

Lilly, your not alone in the ups and downs. Its so hard to keep things straight in your head when all you worry about is what your body is going to do next. It will never be out of your mind, but when things are good it will be there less and less.

As far as the pain returning, its hard to say if it just your body having to get use to the Entocort being gone or if you are still having a flare that didn't go away like you may have thought.
I'm sorry you are not able to enjoy the nice weather and I hope you get relief soon. Thinking of remission for you.

 

[Entchen]

Hi Lilly: So sorry to hear about the return of crummy symptoms. I hear you about the ups and downs, and wondering if something is signalling the return of major problems or not. Hope you can take advantage of the next warm day and get feeling well again.

 

[teeny5]

I am so sorry you are not feeling well. I know it is hard but try not to worry too much, it will make flaring worse. Try to keep positive. You will get through this
Keep us updated!

 

[Astra]

Hi Lilly

I hear ya sista!
It's awful. just when you think you're on the up and up, then BAM! you hit the deck! Like Pirate said, maybe it's the Entocort wearing off and the inflammation is still there, if you're vomiting again, go to A&E, just to check you're not narrowing or blocked.
good luck and hope you feel better soon
xxx

 

[PeninsulaLil]

Thanks for the words of encouragement. They really help!

Lilly

 

[ameslouise]

Ditto all above. Please don't let it go too long with the vomiting - no experience there myself, but from what I have read, it can really indicate something serious. Better safe than sorry and get it checked out.

Hope you feel better soon. - Amy

 

[digestion]

Hi Lilly,

I live in Menlo Park, so I know what you mean by the weather. I also was diagnosed in Oct, 2009. I am mostly in remission, but there's still some lingering issues I am dealing with and some days I just feel really bummed out. Hang in there and I hope you feel better. At least there will be more nice days coming on soon after the predicted upcoming storm.

 

[MikeinBklyn]

Agreed, I'm always waiting for the proverbial "other shoe to drop".

Being people with a chronic illness and especially ones whom have had them for years we tend to have emotional ups and downs. I think it is natural and expected since our lives are a series of ups and downs.

Hope you feel better soon. Keep your chin up.

 

[whysoserious]

Hi Lilly. Sorry to hear that aren't feeling well. Hope you are feeling better soon. How do you feel today? I personally tend to vomit quite a bit if I don't watch what I eat. Hopefully you just ate something that didn't agree with you and aren't flaring.

 

[PeninsulaLil]

Thanks everyone! I am feeling better; no more vomiting; I've progressed to dry toast, boiled egg and applesauce. There is still tummy discomfort but it has moved lower. Having D but only a couple times yesterday. I'm debating whether or not to go in to work today. I'm scheduled to be out of the office tomorrow to write and I'm going to see how breakfast goes. I might switch the days around. I still feel kind of washed out. Right now I'm hopeful this is not the beginning of a flare (or something worse). I'm still learning about how my body is responding to this disease...

Hi Menlo Park! If you're interested, I'd love to meet for coffee (a euphemism) sometime, maybe Cafe Barrone? peninsulalil@yahoo.com

Lilly

 

[Jerman]

Hi and welcome to the forum Lil! I agree with the advice that some of our crohnies listed above. I would also encourage you to keep track of how often this shades down day hits you. It may be anxiety or depression which seems to come with the disease for some of us. Best of luck to you for feeling better soon, hope you feel the warm sun on your face real soon!