Any Help Greatly Appreciated

Hi all
Sorry its been a long time since Ive been here. I've just been battling this quietly and becoming more and more depressed. I have just been started on Humira due to building antibodies against the Remicade, so we are hoping this will work for me, I only had my first 4 shots last week and then went away for a few days to visit with my daughter while she was on a few days of work, and then on my travels home from he place I got a flat tyre on the highway and because i have also been struggling with terrible arthritis in my hands I was unable to change the tyre myself and help was about an hour away from where i was stranded. Then to top it of my bowels decided to put me through hell again and I lost control and had to walk miles to the nearest shopping complex to get to a bathroom to try to clean up as best as I could. I also went in to a shop to buy some new underpants and shorts to put on for the rest of my trip home and of course had to throw my underpants away. When help arrived for me I then found myself heading home and caught in a major traffic jam and had to via off the highway to make yet another urgent stop to a bathroom at another shopping complex and bingo lost control again and had to dispose of my new underwear and drive the rest of my trip home without underwear on which was ok cause i was wearing shorts anyway. The pain in my stomache was unbearable again and I am constantly struggling everytime I eat I cant seem to go anywhere. Is it too soon to expect a difference with the Humira or does it look like this drug is doomed for me as well. I am so scared because we are running out of options for me. The next step for me would be trials which they say is too dodgy for me since we cant chance me getting plasma and not the real drug. Also my liver readings are still extremely high and I am having a liver biopsy next tuesday to see whats going on with that. Sorry to be long winded and constantly complaining on here but I am so down about this happening all the time that I need for your imput as you guys are the only ones that understand what im going through. Thanks in advance for any replies
andorable

Humira took 3 months to work for me also.  Maybe imodium would help with the diarrhea.  I know I can't leave home without it.  I hope you have success with the humira.

Julia

 

Hey Ivy
Sorry i disappeared for ages I didnt mean to worry anyone I was just such bad company and feeling sorry for myself i guess that i didnt want to put anyone else through my misery. I am a little better than i was then but not a lot. As for your question about the remicade yes it was on the pbs at the time i went of it, and stopped responding to it. Also Julia do you still have to take imodium everyday? Even with the humira? I do take up to 8 gastro stop pills a day which are the same as imodium and i still lose control of my bowels it is so upseting. That is my main concern is the constant loss of control, the pain i can live with but the pooping my pants i cant deal with at all, I was walking through the shops crying my eyes out, it was one of the worst days of my life. At least humira might help me I hope. Thanks for caring guys and its good to see u again too ivy. How have u been?
Take care
andorable

((((Andorable)))) so sorry you are suffering. Please don't be a such a stranger, even when times are bad, please come here and vent. No one else but us can understand what you are going thru. Lean on us, thats what we are here for.

Hugs,
Gail *Nanners*

(((Andorable))) it can definitely take a long time for medicine to kick in and make a difference. Like Matthew, I hope that you will experience a turning point soon. I am so sorry that this happened to you and will hope for best results possible on your biopsy.

Take care,

Betsy (-:

Andorable, have the doctors ever mentioned surgery as an option for you? I know major surgery is a scary prospect, but I can't help but think that your quality of life might improve if you had an ostomy of some sort. At least then you'd be able to go shopping without having to worry about having an accident.

Anyway, Andorable, I hope the Humira kicks in for you soon and that you'll be able to post some better news at some point in the next few months. Remember, you're very sick: it may take a little while for your innards to heal enough for you to notice some improvement, so please do be patient and, above all, try not to worry.

Best wishes,

I.

Thank you all so much for your kind words, and I am so glad you all dont mind me coming here to lean on you all and vent. Yes they have spoken about more surgery Ivy but I must admitt I have been digging my heals in on that one since my last surgery was such a disaster I am too afraid to go in for round two. What are you going into hospital for Ivy? I will be thinking of you too and sending healing vibes your way as well. Thanks all and take care
andorable

(((Andorable))) and (((Ivy)))... sending you both well-wishes for your treatments/hospitalization.

Take care,

Betsy (-:

(((andorable))) What you *need* is some Prochymal... but it's not here yet :-(

Ive never heard of that one Ivy, is that another new miracle drug that is only available in the U.S.? I still hope the humira will kick in soon. Had my liver biopsy yesterday and I am a bit sore today. Hoping the results next week will be a bit better than its been in the past.
andorable

Hi Jill,
Got my results from the biopsy and they say there is inflamation in my liver but have ruled out any of the bad things, they say its the crohns that is making it inflamed plus i have a lot of fatty tissue around the liver from long term pred use. In time when we get the crohns under control my liver should improve too. The liver biopsy was ok but was very sore afterwards mostly up on my right shoulder, it was not pleasant but they did give me strong pain relief so i was ok a couple of hours after. take care and let me know how u get on, take care
andorable

Don't believe we've formally met...I'm still pretty much a newbie "2 years Dx'd and 1 resection". I built antibodies fairly quickly to the Remicade and switched to the Humira. They also had to adjust my injections to 40mg once weekly. It did take a couple of months but it has been a Godsend for me! Hang in there...once you're on the bottom...there is no where to go but up.