Question about current symptom

I go in today to do the preliminary blood work for Remicade. I have yet to really respond to 60 mg of prednisone. I'm still having bloody diarrhea. Its really weird though. Morning time always sucks. I go about 3 times in the morning, have bad cramps, and am not really able to do anything. Within 45 minutes to an 1 hour after taking 60 mg of prednisone I feel fine; I'm able to leave the house, run, bike, go to work, and enjoy life. Then about 6 or 7 at night I get really bad gas with chunks sometimes. I'll have gas all night. It wakes me up about 3 or 4 times. Of course, I go to the toilet just in case there are some surprises with the gas. And then the whole pattern repeats itself the next day. I'm getting maybe 4 or 5 hours of sleep at night. So, I don't really think that the prednisone is working this time. I'm also gonna talk to my doc about suppositories and why I'm not taking them. Fuzypants26 or MMMNAVY, can I be deployed while on Remicade?

MemphisMarine,

I'm sorry to hear you are not responding to the prednisone. That was always my "cure all" medication. However, I have made a personal vow to not use it anymore. I am not comfortable with what the side effects may do to my overall health.

I can only speak on the Air Force side of the house.....For us, you may not deploy on anything other than the meds that "maintain" a certain disease. We are disqualified immediately for any of the other meds used to "treat" a flare.

I have noticed that it does appear that medical members are held to a different standard. There could be many different explanations for the surgeons situation. I can only speak of what happens at my base, in the clinic.

I do agree with MMMNAVY that you really need to get your disease "under control", mainly for your own sake. The chronic inflammation in that same area has been said to cause the cell changes in the colon, which we all know puts us at risk for many different problems.

Really utilize all of your resources available to you. Managing your stress at this point is imperative. Added stress usually worsens your symptoms.

The med boards really just need to hear that you are in remission, or certainly well on your way, and that the added stress that comes with the current OPSTEMPO doesn't trigger your condition. Like I said before I can only speak about our med boards.

Best of luck.

the pain you have while going to the bathroom seems like hemorrhoids or you could also have a fissure, which is a tear and is unbelievably painful.  the complications are serious and cause a lot of blood...it can be like going to the bathroom and going completely all squirty liquid blood.  i had both of these problems for years, and lost so much blood that i had to be transfused.  these problems are identifiable with a scope.  Hemmies are often visable just by looking, but can also be internal.  i have had 2 surgeries for hemmies and 2 surgeries for fissures.  these surgeries have left me with less sphinter integrity, which frankly pisses me off because i will never be able to have the most modern colon removal surgery because i cant hold the internal bag.  and it also makes for dirtier underwear just about daily...sorry, it is all so gross)  the final surgery i had caused this weakness and was a side effect that i didnt understand...i would have gone a different route to repair the fissure had i realized.

finally,  i am married and couldnt imagine sharing this disease with someone new.  my husband (weirdly) also has UC.  He had it first before me.  He was sick for 3 years and in remission for 8.  i can tell you that i didnt understand why he wasnt getting better during those 3 years. and he was a villian while on high doses of steroids...(but was never steroid dependent)  i was NOT a good understanding wife.   when i got sick it was so much easier for me because my husband understood what i was going through.  after 8 years in remission my husband is flaring again.  but there is no strife in our marriage over it because we understand each other. 

good luck. 

Please try Pepto Bismal to aid you along.  It really works well for me. 

I went to my Gastro yesterday for my current flare (due to stress) and asked him if he could put me on more than 40mg of Prednisone.  He said there is no difference in the response over 40mg and the symptoms are worse. 

Also, see if you can get on some sort of anti-anxiety/anti-depressant to stabilize your moods and response to stress.  This was absolute key in my recovery and remission.

I got cocky and went off it and that is how I got in the jam I'm in now. 

 

Post Edited (cta) : 12/11/2008 4:59:28 AM (GMT-7)

I talked to the GI and he doesn't want to go any higher than 60 mg. I am still waiting to get some results in order to start Remicade. We are going to try and start tomorrow if we can. I am so ready to feel better. I got maybe 2 hours of sleep last night total from having to go to the bathroom so much. My GI doc is fairly confident that Remicade will work. It shouldn't be a problem with me staying in the Marine Corps on Remicade. I just have to get my UC under control. I should hopefully feel better by next week!

MemphisMarine,

I was just checking in to see how things were going for you? Any improvement in your symptoms?

Glad to hear it MemphisMarine!!

Where are you at with the career decisions? I know that can be a major added stressor.

I'm trying to stay in flight school. I think that if I can get things under control I'll be able to get a waiver to stay a pilot. I've been told if I need a recommendation from the Commodore that I can get it. I'm really banking on that plus other recommendations from my squadron. If I'm not able to get the waiver, I'll try to be an INTEL Officer.

CONGRATS!!!!

I know you are exactly the guy I want protecting our country.....I mean you have survived a major UC flare, and that's a battle in itself.

Best of luck to you, and again THANK YOU.

Air National Guard