worse and worse

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sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 11/18/2008 8:16 PM (GMT -7)   
Talked to my GI this weekend. Humira just isn't really working. I have lots of D and my r-v is still pouring. We're trying some cipro now which I'm glad to be on with the r-v. Crazy back spasms have started too! Where are these coming from?

I'm so discouraged. It's been about a year of this and almost 5 months on humira. Can't stop the D. Everything goes through me--only slowed down by codeine. When the codeine wears off, it's kaboom with more D. The other night I woke up at 2am so hungry. Ate english muffins. I had been too ill to eat dinner but woke up weak from all the D and needed to eat. I'm just so "off."

I just don't know what to do. Will start up ensure again tomorrow. So tired of it all. I'll look like crud and feel even worse. Cooked vegies come out all chewed up. Canned peaches are about all the fruit I can take.

thanks for listening. any thoughts?
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 11/18/2008 9:17 PM (GMT -7)   
I had fistulizing crohn's when I was originally diagnosed several years ago, and the only thing that cleared them up was Remicade. I took Remicade for several years and LOVED it, before it "wore off". I didn't have any luck with Humira. Have you tried Remicade?

The only other thoughts I have would be food allergy testing... I know it's just one more blood test to be annoyed by, but maybe you have food sensitivities or something? I found out that I have a soy-intollerance, so all those nights I spent drinking Ensure weren't doing me any good because of the soy in them. This disease is such a pain!

Hope you feel better soon!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

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


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 11/18/2008 11:31 PM (GMT -7)   
As we all try to say and think: the learning curve. You just have to find what medicine will work with you. I wish you all the luck hon. Just try to remember that soon, you'll have this bad boy figured out and you'll be on your way to doing stuff again.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/19/2008 7:28 AM (GMT -7)   
Hi Sammies where is your CD located ?Are you taking B-12 shots?Vitamins to boost your body's healing process? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 11/19/2008 9:04 AM (GMT -7)   
Sammies, I can't offer advice but wanted you to know that I'm so sad to hear that you are struggling. You have given me support and I want to return the love. I hope you are feeling better soon and finds something that works for you. Much love and laughter to you!
32 yr old Dx w/UC in 2001 - some what controlled by diet. I take multi-vitamins & probiotics.
Mother to 16 yr old daughter dx w/CD 9/07- she had surgery for abscesses 11/07, ileocolectomy/resection 10/08. She is taking multi-vit, iron for anemia, probiotics, bentyl prn, prilosec 20mg-x2, 6 mp 50mg-x3


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 11/19/2008 3:39 PM (GMT -7)   
patient spiders and joie--I am thinking about remicade. Doc does not think I'm a good candidate for it but I think I want to try before truly considering surgery.

gachrons--I am having difficulty in my terminal ileum and right colon. All the D is driving my rectum CRAZY with cramping. Doc is talking surgery which is upsetting b/c I've avoided the knife for 23 years. Always knew the right side might need a resection. Doc says no hurry but he thinks the humira should be working more by now.

lil momma--thanks! You and Sierra remain in my prayers.

My study--MRI, barium enema, colonscopy, sbft are very confusing in the terminal ileum and right colon. Doc is thinking fistulas and bacteria buildup.

thanks for the responses and support. today I am a ball of gas waiting to explode!!
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/19/2008 4:08 PM (GMT -7)   
Hi Sammies I know the TI can be a problem area and not much fun. You certainly have gone a long way without surgery but if it is down the road at least it might bring you some relief. Have you had a second opinion on this? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 11/22/2008 10:56 AM (GMT -7)   
Sammies...fistulas will show up usually in a contrast CT scan. That's how they always saw the abscesses. I had an open hole from the JP drain and it was oozing um...nasty stuff. So for one of my tests, they shoved this painful tree shaped thingy in it, and pumped contrast into it. I was told if it hurt to say the anesthesiologists name which was Michael. I screamed it before fainting. Still, as painful as it was...they got REALLY great views of the fistulas that were connecting all the wrong things.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 11/23/2008 10:20 PM (GMT -7)   
Joie1--wow that sounds awful. During my last colonscopy, GI thought he saw an opening but MRI and barium enema proved no. I don't know how they'd get contrast in there to see. Started the cipro which was helping until I drank ensure--I used to be able to take these twice a day. Now, I'm gassed up and so sick from them! Tonight has been quite awful. I can't believe I can poop anymore.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 11/24/2008 3:41 AM (GMT -7)   
Hi sammies are you drinking alot of water. It is very important to drink water to keep hydrated.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


1+1=2
Regular Member


Date Joined Sep 2005
Total Posts : 25
   Posted 10/15/2010 9:44 PM (GMT -7)   
I take 50mg, 2 pills a day of the "extended relief" Codeine contin (as opposed to the regular codeine) tablets a day and find the effects of the codeine doesn't wear off. When I was on the "regular" type of pills I too had immediate cramping and pain as soon as they wore off but with the "gradual release" type of pill, they don't seem to wear off, I rarely have D now and it has been a godsend as far as allowing me to live outside of a bathroom.
-------------------------------------------------------------
Diagnosed with Crohn's Disease in 1994
1st resection 1994
2nd resection 1999
3rd resection 2008 followed closely by 2 more operations due to major complications - leak at the anastomosis, GI hemorrhage, temporary jeujenostomy
--------------------------
also have MEN Type 1

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/16/2010 1:19 AM (GMT -7)   
Just a reminder that this was originally posted in 2008, so further responses may be unnecessary.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~
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