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Regular Member

Date Joined Jun 2008
Total Posts : 197
   Posted 10/3/2008 12:42 PM (GMT -6)   
Hey there I miss chatting with you all but well. . . life kinda blew up at me in a crazy but good way.

Some of you may remember I was freaking out about starting the Remicade because I already have monthly Iron IVs and not the best veins in the world to work with. They are actually so poor the Remi takes me 4+ hours because they use a gravity drip and not a pump. On top of that I had a 19 month old with a broken leg. . . .things weren't fun.

Well freaking out or not the Remi seems to be working. I go for my 3rd iv next week, I responded within the first week of the first one. I have almost no pain and cramping now and an average day is one maybe two trips to the bathroom and formed . . .that's something I haven't seen in over 10 years now. It's like gaining life back again, I'd forgotten that I could do so many ejoyable things. I'm able to eeat things that I stopped eating because they aggravated me so much like milk, garlic and lettuce. . . .I actually ate a salad for the first time just this Monday and I didn't suffer for 3 days because of it. . . I was ecstatic!

I am not as tired anymore so I'm out doing more things and just to prove my stamina I took on making a quilt in a week . . .successfully too! The house is actually starting to look clean and less cluttered instead of "just picked up" because I have the energy to get ahead of it instead of barely keeping up with it.

I just wanted to really thank you all SOOOO much for listening to me and giving me advise. None of my family really understood what I was dealing with and it's great to talk to people like you that do. I'll still be around and probably a little more than I have been the past month now that the planning on the work budget is over for this year.

*hugz* missed you all!
~ Mom of Nathaniel aka "Peanut" 20m (8/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - 1st Remicade 8/20 - 2nd coming 9/10- Align 1x day - Prenatal Vitamin
Colazal,6mp, pred asacol
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferrlicet IV monthly
- Allergies - Zyrtec 10mg 

Veteran Member

Date Joined Jun 2008
Total Posts : 742
   Posted 10/3/2008 1:38 PM (GMT -6)   
GREAT NEWS, Kim! I'm so glad to hear that one of "us" has found relief and is getting to lead a normal life. I hope you enjoy a long and happy remission!!! :-)

(Sorry to hear about the broken leg. I hope you're little one is feeling better soon.)
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis
Current Treament:  Asacol 1200 MG 3X daily, Cortenama 100 ML nightly, Iron 325 MG 3X daily, Zoloft 50 MG daily, Bentyl 20 MG and Tylenol (as needed).
Diet/Exercise:  Avoiding trigger foods, eating very healthy.  Yoga or walking, when possible.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa.
Status:  Flare

Veteran Member

Date Joined Aug 2008
Total Posts : 5975
   Posted 10/3/2008 1:43 PM (GMT -6)   
     Hope the Remicade continues to give you relief.  I, personally, cannot take the Remicade as I was exposed to the TB virus in the 60's and the injections could be fatal.  Good luck to you.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.

Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 10/3/2008 1:55 PM (GMT -6)   

I am so glad that Remicade is working for you! I hope you're in a nice long remission. (I do have to say that I'm a bit jealous; I've had 4 infusions and am still not in remission!)

Oh, and I hope your son is doing okay with the broken leg!

Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 2 Anucort

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 10/3/2008 5:17 PM (GMT -6)   
So glad it's working for you. When it works, it's almost miraculous, isn't it?
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Veteran Member

Date Joined Mar 2008
Total Posts : 1580
   Posted 10/3/2008 5:35 PM (GMT -6)   
Amazing how well it can work for spme and do absolutely nothing or only work for a short time on others. I think when science can answer that question we will be one big step closer to a much better treatments...
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

Elite Member

Date Joined May 2003
Total Posts : 31006
   Posted 10/4/2008 1:20 AM (GMT -6)   
Welcome back! happy to see you're doing well.
Hope Peanut is fully recovered.

*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 10/4/2008 1:57 AM (GMT -6)   
Wishing you a super long remission, yrs and yrs to come!!

My bum is broken....there's a big crack down the middle of it! LOL :)

Elite Member

Date Joined Apr 2004
Total Posts : 23551
   Posted 10/4/2008 8:09 AM (GMT -6)   
*Happy dance for you!* I'm so glad you are feeling better.
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE


Regular Member

Date Joined Jun 2008
Total Posts : 197
   Posted 10/6/2008 1:54 PM (GMT -6)   
Dancing. . . . .I'll have to try that next!

My heart is with all of you that can't seem to find your remission yet. . . .I will keep saying my prayers for you all. That's mostly why I posted, I didn't want you to feel that just because I'm feeling better I've forgotten where I've been. It's hard and I remember it all too well. . .I'm actually waiting to see if the bubble breaks and reality comes crashing back on me but if it does I've going to get all i can done now before it gets a chance (o: I'm going with the theory that if your' ready and prepared for it. . . it doesn't happen LOL

Regarding Peanut. he's out of the cast, took 32 days for it to heal (oh to be able to heal like a child!) He's running like a wild one again but instead of a steady pat pat pat pat he has a limp that they assure me will work out in a few months. For now sounds like the clop clop *pause* clop clop of horse gallop. . . it's cute but for his sake I do hope he out grows it.
~ Married ~ 36
~ Mom of Nathaniel aka "Peanut" almost 2 (12/08)
"The List "
- UC dx 8/2000 - Remicade 8/08 - 3rd 10/10- Align 1x day
Colazal,6mp, pred asacol
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferrlicet IV monthly
- Allergies - Zyrtec 10mg 

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