So frustrated.

[Kittee]

I cannot get this flare under control.

I am so frustrated. After my ER visit last month, it's now been a good 4 weeks since I've been on Pred and I'm just not having any results.

What should I do?

My D isn't too bad but I keep getting horrible stomach cramping and pain. You guys know what I mean. I'm just so uncomfortable and "icky" feeling all the time. And I keep (tmi) leaking.


And I cannot sleep, the pred is keeping me up at night. Then I get sleepy mid day and I cannot nap then.

:ymad:

I am feeling bad because I want to play and have fun with hubby but its been a month and I just don't feel well enough for that sorta thing.

What can I do? Should I call my doc and see about going back up to 40mg Pred? Seems like this taper is failing me. I didn't even feel better really 100% on 40 before I went to 35 though...and now I'm 2 days into 30 and I feel worse again.

I mean, I can't keep taking mega dose of pred?

 

[My Butt Hurts]

Are you taking anything else besides the pred Kittee?
If it's not giving you any relief you might need something else too.
I've heard that you can try rectal kegels to help with the leaking.
I'm sorry you are feeling so crappy.

 

[Kittee]

Thanks guys.

MBH- I'm on Remicade too. I have another infusion coming up very soon.

 

[kello82]

rectal kegels? are those like tension execises for your b-hole?
i have a leaky problem too kittee mines been goin on for a loooong time.
certainly makes one feel oh so confident.

 

[My Butt Hurts]

rectal kegels? are those like tension execises for your b-hole?

Yup. If you google 'rectal kegel' you can find some info on it. I think there are 2 diff ways to do them. One is holding gently, and one is holding like you're gonna poop your pants. Not sure about the time to hold them either, but I think it matters. Happy kegeling!

 

[Kittee]

Ok go ahead and laugh at me for this one.

Last night I fried some fish and chips and said to my husband and myself that it was my "last" meal before going soup and liquids today...

I went totally naughty eating fried, which is something I haven't done in MONTHS.



Today I feel better than I have in a month. LOL

Maybe the grease has soothed my insides. I have no idea lol.

 

[kromom1]

How often are you getting the Remicade? Maybe you could decrease the interval between infusions? Just a thought. That fried fish sounds really good...

Lisa

 

[Kittee]

Every 8 weeks. I've asked the DR about it and she seems to think the intervals are good, but she is going to increase the dosage next time. (End of this month.)

 

[jed]

maybe fish was a help to you kittie?
i lived on that stuff for so long when flaring, and it never seemed to upset me?

 

[kromom1]

I hope the increased dose of Remi will be the answer. Good luck and keep us posted.

Lisa

 

[Kittee]

Ugh heart palps.

Pred...I hate thee.

 

[Zman]

Easy fix for the leaking problem: Colon removal , ostomy , wear the bag . :eek2: Oh its not that bad once you get used to it its better than all the pain and embarrasment.

I am 47 have had CD since 16 been on every med imaginable . I was on Remicade and 6mp that was a Godsend for me . worked for 13 years of no problems . Before Remicade I had a small bowel resection and then my Colon removed. I grew immune to the Remicade avoided surgery when they switched me to Humira . That worked for a year then a flare up hit me overnight. Ended up in surgery again for 4 hours. Grew immune to the Humira .
I cant have any more removed so my choices , double the Humira which my insurance would not pay for , it wasnt working any way . Roll the dice and take Tysabri . Do nothing and wait. I am symptom free due to the surgery after the last two surgeries its usually around 5 years before I have any problems. So I decided on the tysabri I have had 4 months on this drug now . I am symptom free had joint pain for the first two months but now all is ok . I eat well putting on wieght but I do not know if its because the surgery removed all the disease or if the drug is working. In my DRS office 5 of us started the drug I'm the only one left on it now. So My choice is what do I die from PML or CD , who knows I do know this if I have another flare up I can kiss it good bye my brother died from the same thing at 42 . SO for now its the tysabri for me and I'm doing great. Also Biogen is paying for what my insurance will not.