Any Help Greatly Appreciated

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/31/2008 9:46 PM (GMT -7)   
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

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 10/31/2008 10:11 PM (GMT -7)   
You've still got a lot of time for the Humira to start working. I believe it can take up to two (maybe even three?) months to be getting the full benefit of the drug. I started mid July, and it was mid August before I started feeling any difference. My crohn's has been under pretty good control since then. Hopefully, things will start looking up for you soon!

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 10/31/2008 10:49 PM (GMT -7)   
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
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/1/2008 12:53 AM (GMT -7)   
***Andorable***!!! It's so wonderful to see you here again. Don't disappear for long periods again, ok? People here care and worry for you :-) *hug*

I'm sorry you're having such a horrible time right now. The others are right: don't panic yet. You won't be reassessed for another three months, and even then you'll probably get another three months after that before they decide that it's definitely not working for you. You have lots of time yet! Just relax, try not to worry too much, and let the Humira do its magic.

Andorable, was the Rem on the PBS when you stopped responding to it?

I'm so relieved to see you again. You were so sick when you last posted: I had no idea what had happened to you.

Take good care.

Ivy.
Co-Moderator Crohn's Forum.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 11/1/2008 5:44 AM (GMT -7)   
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

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 11/1/2008 8:22 AM (GMT -7)   

 

 

       <<<<HUG>>>>

    Just remember, it WILL get better. I won't torture you with used up old cliche's but it does seem like you hit a very low point before there is a turn around. I know I did..

         Sincerely,

         Matthew

        PS. Sorry I've not been around much lately, either. Everything is actually pretty quiet on the CD front here..

 

turn

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/1/2008 10:16 AM (GMT -7)   
((((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*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 11/1/2008 10:22 AM (GMT -7)   
No advice I'm afraid I just want to say how awful I feel for you how rotten was that! <<<hugs>>> I hope it all works out so that you never have to suffer like that again!

TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 11/1/2008 4:21 PM (GMT -7)   
(((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 (-:

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/1/2008 5:57 PM (GMT -7)   
(((HUGS))) Andorable, I hope the Humira kicks in for you soon, that is just so horrible what you have gone through :(
Jo

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/1/2008 7:39 PM (GMT -7)   
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.
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/1/2008 7:40 PM (GMT -7)   
ps. Good luck with the biopsy. (We're both going to be in hospital on Melbourne Cup day! I'll be there too, and will send you lots of healing vibes.)
Co-Moderator Crohn's Forum.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 11/2/2008 1:00 AM (GMT -7)   
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

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/2/2008 3:38 PM (GMT -7)   
Nothing big, andorable, just an infusion, but it's an infusion that takes about 6 hours, so it's a long and dull day :-)

I can't remember what happened with your surgery last time. In what way was it a disaster?

Keep hanging in there,

I.
Co-Moderator Crohn's Forum.


TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 11/2/2008 4:20 PM (GMT -7)   
(((Andorable))) and (((Ivy)))... sending you both well-wishes for your treatments/hospitalization.

Take care,

Betsy (-:

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 11/4/2008 6:51 PM (GMT -7)   
Hey Ivy,
my last surgery was a disaster cause the crohns came back pretty much straight away. I never felt a remission at all that we had hoped for. So for that reason I call it a disaster. So I am afraid of more surgery. I know what u mean about boring having the infusion so at least being on humira now I wont have to spend those long days in hospital having remicade anymore either. Take care
andorable

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/5/2008 12:33 AM (GMT -7)   
(((andorable))) What you *need* is some Prochymal... but it's not here yet :-(
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/5/2008 12:35 AM (GMT -7)   
... but I still wonder about an ostomy. Even if you got one and the Crohn's came back right away, at least you'd be pooing into a bag and wouldn't have to worry about having an accident. (That's my understanding, anyway.)

Do the doctors realise just how big an impact this is having on your life?
Co-Moderator Crohn's Forum.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 11/5/2008 12:39 AM (GMT -7)   
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

jill in ca
New Member


Date Joined Oct 2008
Total Posts : 19
   Posted 11/24/2008 8:00 PM (GMT -7)   
If you get anywhere with you liver problems, can you let us know? I too am having those problems and can't seem to find any answer. Not sure if its just a typical side effect that will always surface with this disease. Sorry to hear you have to do a biopsy...hope you feel better.

Jill in CA
Diagnosed with CD in 2004.  Currently taking Pentasa, Entocort, probiotics, fish oil, ultra inflamx powder.  Dairy and wheat free diet.  Only struggling now with fevers, everyday!  No surgeries yet.  Tried Mp6-gave me joint pain/tried remicade-gave me pneumonia


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 11/24/2008 9:08 PM (GMT -7)   
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

baaadgut:(
Regular Member


Date Joined Nov 2008
Total Posts : 22
   Posted 11/28/2008 8:29 PM (GMT -7)   
No wonderful advice, just wanted to send hugs and hope things are slowing down. Sounds like things are really rough going for you right now, hope the Humari kicks in soon. And it really is good to just vent sometimes>

Take Care
 


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 11/28/2008 9:28 PM (GMT -7)   
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.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


baaadgut:(
Regular Member


Date Joined Nov 2008
Total Posts : 22
   Posted 12/4/2008 7:44 PM (GMT -7)   
Broomhilda, I see you have psoriasis listed as a secondary disease. I also have psoriasis and I have a couple of questions. Do you find the worse your chrones is the worse your skin gets? Does the humira help your skin? Did anyone ever tell you that the two are related? I take both Remicade and Methotrexate which usually clears up my skin quickly. Any insight would be great. Talk soon!!
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 11, 2016 7:05 AM (GMT -7)
There are a total of 2,736,310 posts in 301,367 threads.
View Active Threads


Who's Online
This forum has 151462 registered members. Please welcome our newest member, barbarwhit.
240 Guest(s), 5 Registered Member(s) are currently online.  Details
Asha00, mrs. george, reminder, nostress, LMusings


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer