Venting....Flaring.....GRRRRRR

[Jessie_76]

Well, this flare started back in November of 2011, fistulas were showing serious infection and aggrevation. Dr. Finally discontinued Humira, and well here I am almost two months no Humira, Prednisone to keep inflammation down, a thin 115lbs, at 5'5" i look gangly and sickly, I am self conscious of the flabby saggy skin, and well the BM's are at their worst. Sometimes 5 an hour, a consistency of snot and mucous. That is if I haven't eaten for a day or two. Then I eat because I AM SOOO HUNGRY, and it's like trying spasms, and crying, and praying it will be over soon, my legs hurt, from the lower back into my hips, and thighs, light headed and dizzy, weak and tired. Yet I manage to plug along. I am wish I could wave a magik wand. My three kids suffer, I am afraid to leave the house, so it's quick trips mentally checking off the bathrooms at friends homes, and gas stations along the way. The partner works long 12 hour days, and picks up what slack there is, I am a trooper, so there is not much. But the guilt, the embarrassment, the accidents, the pain, the depression, IT's THE SHITs with no giggles!!!!!!! I don't sleep at night, the oopsies send me running to hang out on the toilet or sleep in the bathroom on the floor. This damn study medication I pray works, I pray that this damn disease goes away, I am tired of the drugs, the soiled panties, the family that is affected, I am tired of people thinking I am on street drugs ( that one was RICH???) I am tired of Crohns and I hate you Crohn's disease at this moment:kissgrits::kissgrits: there is no alternative view that can make me laugh, there is no being optimistic, I hate you Crohn's because you are screwing with my head and for the first time in a long time winning. Fock off and go to hell Crohn's Disease. Today I refuse to accept you as a blip on the radar, today if I could I would wash my hands of you and never look back.

 

[Manzyb]

Hi jessie, I am sorry that you are having such a hard time right now.

I hate you Crohn's too!! I can't offer any comfort or advice to you, but big hugs to you and your family. I hope things get better for you soon.

 

[tiloah]

I'm so sorry you are struggling and suffering like this. Big hugs from me as well. I really hope that study medication does the trick for you.

 

[Jessie_76]

Update lol and I am in a much better mood today and the last few weeks. Well after going to the Docs and being examined I was disqualified for the study. Apparently the main fistula was seeping which was a shock as I hadn't noticed any issues, but then again I have been severely incontinent, and going to the bathroom soooooo much that I suppose i really hadn't had the time to notice. So Just finished a 60 mg/10mg taper off of Prednisone, and was started back on flagyll, to help the fistula's. I am irked about the fistula because well when the Doc told me stop the Humira because it wasn't working and the fistula were oh so terrible, well I would almost gladly go back to that. OOOOHHHH the irony. Anyhow so Doc wants to see what is going on and I am going this coming Monday to get in on the PilCam study for the safety of Crohns. I had to laugh the other day when pfizer sent me the check for the CPO-690-550, I thought hmm that is the first time I have been paid to let a the Doc examine my bum.......I was so tickled I was laughing out loud. My partner looked at me and rolled his eyes when I told him the reason for the humor. HE smiled and kissed my cheek.

The Prednisone withdrawal which I am not totally sure about but it's been three days since my last pill and my joints ache, and my right hand is drawing up and swollen at the joints. ( makes typing a bit harder....peck...peck...peck) feedback on the prednisone withdrawal symptoms would be appreciated.

So where do I go from here? What is my Doc and I's next step? The surgeon says let's take it all out, my Dos says no way I am too young, and he well doesn't believe surgery is best for Crohns.

I have been investigating at great lengths a chlorophyll, colloidal silver, with intense pro-biotics. The prices aren't too bad. Last summer when I was drinking chlorophyll all day long it seemed to well I actually was constipated for a few days. IMAGINE THAT!!!!!!

I am down to 110 lbs, on a 5'5" frame, and I am lost in this chaos. I am scared to leave the house, from the time I wake up until the time i go to bed....mind you night time bathroom visits aren't counted .....i am visiting the bathroom up to 23 times a day. Showering at least 3 times because I can't make the run up the stairs fast enough.....my toddler when BM's are a bit more painful will find his way up the stairs and wants to sit on lap giving me kisses, and his little baby arms so sweetly around my neck.

I have been to the ER....they accused me of seeking pain meds....and well we all know how that is.....

Anyhow trying to smile and have hope, and battle the depression that is wanting to sneak in at feeling helpless. Thank you for the support, and I am so glad I found this forum, because even if no one reads my posts, at least I can vent. Turn off the computer, and walk away from the gripes.