large instine = war zone... humira... help?

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patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/3/2008 9:49 AM (GMT -7)   
There's not much need for a back story here, so....

I am passing 90% blood at ever BM. Yes, I am in the hospital. No, they do not seem too concerned.

I had a colonoscopy yesterday that established that the entirety of my large intestine looks like it has been through a war zone and not survived. It is ulcerated, bleeding, and just generally pissed off across every inch of itself. This, i suppose, would explain the insane amount of blood that I pass instead of stools.

I have about a 1 hour turnaround rate from the time some jello enters my mouth until it is floating away in the toilet again, primarily unchanged after traveling through the entirety of my digestive system.

GI wants me to start on Humira.

Given the condition of my gut, how long will the humira take to provide some relief?


P.S. There is no more baby.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
No current chronnie meds, but I've tried just about all of 'em!
Digestive enzymes, and probiotics only.

And, I'm pregnant with my first baby! Due around Valentine's Day. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/3/2008 9:58 AM (GMT -7)   
Patientspiders I am so sorry you have been so sick and so so sorry about the loss of your baby. I hope the Humira is the answer and hope you get to feeling better soon.

God Bless,
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.


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 8/3/2008 10:25 AM (GMT -7)   
Patientspiders:
I'm sorry about your condition as well. I have crohns colitis too --- affecting my entire colon as well. After a myriad of drugs (Cipro the only one that worked for me, which I was on for five years and then stopped working), I just started Humira too. It has been 2 1/2 months and I think it is starting to kick in, but I am not even sure yet. I posted a few weeks ago asking the same question, how long does it take Humira to work.

Some people said they got relief instantly, and for others it took 4 months. So, the timeline for people is very different.

Good luck and sorry about your baby.
I am hoping to have a second child on Humira if it does kick in.

Debbie

smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 8/3/2008 10:47 AM (GMT -7)   
I am so sorry for you and your hubby, my heart hurts for you just reading your post. I am so sorry you lost your baby, I too lost twins at 13 weeks and know had sad this is. I hope they take good care of you in the hospital and I hope the Humira acts quickly for you. I have no experience with this drug so others will be on with their expertise soon. Thinking of you and let us know how you are doing.

Hugs,
Shelley
  • 41 yr old farmwife!! and mom of boys 11 and 9
  • resection surgery Feb. 2008
  • Pentasa, Entocort (when needed), citalopram,probiotic
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/3/2008 2:37 PM (GMT -7)   
Hi Don't know how long it takes to work but sure sounds like you need something right away. Hope they are taking good care of you will be hoping things get better for you soon. Will be thinking of you. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Cookie's Wife
Regular Member


Date Joined Aug 2005
Total Posts : 299
   Posted 8/3/2008 3:03 PM (GMT -7)   
Patientspiders-

First off... My deepest sympathy on the loss of your baby.

I too have Crohn's/Colitis. I ALWAYS pass blood when I flare (that's how I know I'm in one). I started Humira in October of '07 and my GI stated that it can take up to 3 months for it to kick in. She also stated that you need a baseline drug too for Humira to be really effective. I don't know if that's just for me personally or anyone that's on Humira. I wasn't faithful in taking my "baseline" drug and was in the hospital for a week in January. I now take my Humira and Asacol (baseline drug) faithfully. Do I still have bad days... yep but I now can live a somewhat normal life.

I know it's hard but hang in there. I'll pray for you!

Jeremiah 29:12 (The Message)
"When you call on me, when you come and pray to me, I'll listen."
~april
 

 



Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/3/2008 3:10 PM (GMT -7)   
Check your email. (((((((((((((HUGS))))))))))))))

closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/3/2008 3:22 PM (GMT -7)   
oh hon...I'm so sorry for your loss. I don't know anything about humira, just wanted to offer my support and hugs. *hugs*
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 8/3/2008 4:00 PM (GMT -7)   
Oh no, I am so sorry for your loss. =(

I saw results immediately on Humira (within 2 weeks of loading dose) but my damage was not as extensive as yours. I hope it works quickly for you - it's truly given me my life back.

potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 8/4/2008 8:38 AM (GMT -7)   
I am so, so sorry about the baby. How sad and tragic for you and your husband.

I hope you can give Humira a try and that you will see results. I was always a very heavy bleeder for many, many years. Crohn's is in my large intestine and had been severe. Humira has worked wonders for me. I was one of the people who took about 4 months to see huge changes, but I remain in remission now at over 2 years. I also take Asacol.

Good luck to you and please take care!

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/4/2008 9:53 AM (GMT -7)   

I too am sorry for your loss! I cannot imagine the pain losing a baby could cause hugs to you and your family!

I say take the Humira right away! I am not as bad off as you but it started working right away and with each dose worked even more!

Karen

 


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/4/2008 1:22 PM (GMT -7)   
just wanted to pop in and let you know I'm thinking of you. *hugs*
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 8/6/2008 10:33 PM (GMT -7)   
Patientspiders....just wanted to bump this post up to see how you are doing? I have been thinking of you lots and look for you on here each day. If you see this and have time let us know how you are. Hopefully you are feeling a bit better and maybe at home by now resting? Take care and big hugs.
 
 Shelley

ddr030505
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 8/7/2008 7:18 AM (GMT -7)   
I have been on humira since 12/07.. It really did work for me, my only flare was right before I found out I had a virus, they treated it with just entocort and now im off humira for the next month while i take antibiotic.. but humira really did work but i also took asacol and if you can talk with your doc about b-12 if you are not taking it.. that seems to help with discomfort alot..
I am truely sorry about your loss. Good luck
sending my prayers
denise
23 year old married female Diagnosed Sept '03 still fighting for remission
longest break 9mths; meds: Asacol 6-400mg tabs aday, Iron 40mg; just stopped Humira due to a CMV virus which cause liver elevation
Live Laugh Love, Live by this and you can fight anything!!
There are moments in your life that makes you and sets the course of who you're going to be. Sometimes there little, subtle moments. Sometimes, they're big moments you never saw coming. No one ask for their life to change, but it does. It's what you do afterwards that counts. That's when you find out who you are.
 


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 8/7/2008 11:13 AM (GMT -7)   
you poor darling, it has been several days since you posted this, how are you doing?
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/7/2008 12:00 PM (GMT -7)   
I got an email on Tues. She's in the hospital and still having quite a rough time of it. For any of you who have ever been admitted you know the idiots that work in the hospital and it seems she's dealing with all of them! Keep her in your thoughts. I hope she'll post soon!

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 8/7/2008 3:55 PM (GMT -7)   
thanks for letting us know stef, please let her know we are thinking of her. yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 8/7/2008 8:27 PM (GMT -7)   

Yes, thanks Stef for letting us know.

Shelley


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/7/2008 11:51 PM (GMT -7)   
(((patientspiders))) I am so, so sorry.
Co-Moderator Crohn's Forum.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/8/2008 2:49 AM (GMT -7)   
Hi Hope things are a little better for you. Have you started the Humira? Wandering how your doing and check in when your able. Lot of Love gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


biologyforlifevsu
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 8/8/2008 8:47 AM (GMT -7)   
Wow, my thoughts are with you and I'm terribly sorry for your loss.

I was put on humira after a stay in the hospital last year and I started seeing good effects around a month. Heres hope for a speedy recovery!
24 year old female
Diagnosed with CD in 1997, re-diagnosed with UC 2007 (came close to losing the colon to an antsy surgeon,) re-diagnosed with CD 2008....make your mind up!
 
Fistulae
Hemorrhoids
Uclers
Joint pain and swelling
 
Currently taking:
Humira injection every two weeks
Lialda 2.4g a day
Levsin SL prn
Ultram prn
Lortab prn
Zoloft every day
Vitamin B shots
Prednisone for flare-ups
Levaquin for flare-ups
Flagyl for flare-ups
 
 
Tried:
Remicade bad reaction to second IV infusion
Azulfidine
Entocort
6-MP severe bouts of nausea
 


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/8/2008 3:06 PM (GMT -7)   
Thank you all so much for your concerns, hugs, and prayers. I have needed everyone one of them. I am on lots of different meds right now, so please bare with me as I try to type you a brief update..

I had PICC line inserted today because my veins kept blowing. The line is a miserable contraption that sticks out the inside of my forearm like a dangly child's toy, but if it serves a purpose, so be it.

I am supposed to start receiving TPN through the PICC line tonight or tomorrow, as I am still unable to eat or drink anything the proper way.

Due to the miscarriage, the Humira had to be post-poned until there was no risk of infection. I think we have passed that point of security, and I am under the impression I will start the loading doses of Humira tonight.

That is all I have time or the ability to write for the moment... but I am hanging on. This has been the hardest week of my life, but knowing you all are here has meant SOOO very much to me.

Bless you all, and I will write more when I can!
((((hugs))))))
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
No current chronnie meds, but I've tried just about all of 'em!
Digestive enzymes, and probiotics only.

And, I'm pregnant with my first baby! Due around Valentine's Day. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/8/2008 3:14 PM (GMT -7)   
Hi So very glad to hear from you. It's great you"ll be getting some kind of nourishment and that they have your line in. I am so hoping that the Hum. does you good. Sending hugs too and feel better soon.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 8/8/2008 5:18 PM (GMT -7)   
So happy to hear from you. I hope you start to feel better soon with the TPN and Humira. Get lots of rest and sending lots of love.

Shelley
  • 41 yr old farmwife!! and mom of boys 11 and 9
  • resection surgery Feb. 2008
  • Pentasa, Entocort (when needed), citalopram,probiotic
 

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