so discouraged

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Regular Member

Date Joined Jan 2008
Total Posts : 381
   Posted 12/22/2008 3:13 PM (GMT -6)   
Hey guys-
Back from the doctor --- I told him no more Remicade. After 11 infusions and no help it is ridiculous to keep doing it especially since I am on 6mp AND prednisone. He agreed and said it was up to me. No kidding! I don't know how much more my body can take.
I have gained 15 pounds in 3 months ( since taking pred). Now I am about 70 lbs overweight. Yea!
I feel horribly- mouth sores, severe fatigue, severe anemia, rapid heartbeat, out of breath, and still going to bathroom 8-10 times a day. Granted the bleeding has diminished since the pred. but nevertheless, still diarrhea and urgency...
Ok- so here is my plan: I am tapering off the pred. completely off. I am staying on 6mp going up to 100 mg within next two weeks.
AND I am getting on the treadmill if it kills me and I only walk for half a mile.
Seeing the doc. late Jan. and then it is off to the surgerons for sure if I am still the same
Thanks for letting me vent- this is the only place where I am totally understood....
Jackie, 43

Pancolitis, DX October 06

Lexapro, colazal 3x3, Sythroid, Protonix, Flagyl

10 infusions of Remicade- doesn't work
Severely anemic-

back up to 30 mg of pred
Added 6MP- November 25th
Surgery almost certain

Forum Moderator

Date Joined Dec 2008
Total Posts : 15902
   Posted 12/22/2008 4:11 PM (GMT -6)   
I hope you can get some relief soon. smurf

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 12/22/2008 5:19 PM (GMT -6)   
So sorry you are suffering, that prednisone is cruel.
Try interval training, it works faster from everything I've read, and doesn't take so long and isn't as boring! Every 3 minutes or so, go as fast as you can and count to 20 or 30. Or even just 15. I do this on an elliptical, but I think it would work on a treadmill too. about 15-20 minutes of that and you're done. You'll feel it!

I can lose weight best on Atkins/lo carb. Since prednisone weight is unnatural, it works really fast!
Good luck, I hope you feel better soon, whether you decide to have surgery or not.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 

Regular Member

Date Joined Dec 2008
Total Posts : 34
   Posted 12/22/2008 6:58 PM (GMT -6)   
I feel for you Jblue65- I'm a 43 year old female and going through similar stuff to you. I am in the worst flare ever after 6 years in remission. I am on 6MP, salofalk and 1 prednisone a day (if I remember- i hate pred). I'm also in the Golimumab study- maybe speak with your doc about getting into that if you're ok to do it. I wish i could tell you i'm feeling a lot better on it, but so far, nothing much has changed. Don't be discouraged. Somethings gotta give!!

Good luck.


Veteran Member

Date Joined Mar 2008
Total Posts : 1580
   Posted 12/22/2008 7:23 PM (GMT -6)   
Hang in there and I admire your tenacity to excersize...I do the same thing with the treadmill and swimming.
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and 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!!!

Veteran Member

Date Joined Jun 2008
Total Posts : 2865
   Posted 12/22/2008 7:30 PM (GMT -6)   

Jackie - one last try and hoping it works for you.  I am 25 years older than you.  I am a believer in NO surgery unless life threatening problem.  This just might be your choice to get your life back.  According some I know and some I read here - surgery can get your life back and when you are my age - 25 years from now - you could be soooo happy you did. 


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Close to remission -spoke too soon!

Old Hat
Veteran Member

Date Joined Feb 2007
Total Posts : 5154
   Posted 12/22/2008 7:32 PM (GMT -6)   
If you're bleeding, anemic, & fatigued, you should not work out heavily! That will just prolong your flare. Try to start losing weight gradually thru portion size control, snack on nutritious but lo-cal foods, etc. You need to rest in order to heal. It would likely help to do some simple stretching exercises to keep flexible + some light strength training-- 2 lb. weights initially. Sorry that Remicade has not worked for you. Have you tried using retention enemas to supplement the Colazal/6-MP? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Regular Member

Date Joined Jan 2008
Total Posts : 381
   Posted 12/22/2008 8:32 PM (GMT -6)   

Thanks to all who responded.Some good advice.  I live in Florida and have a pool. I love swimming but my pool is not heated and even here it is a bit to nippy to swim. I will definitely take it easy and work desperately on portion control. As for the enemas- I used Rowasa for a year and then it stopped working.

 Again, thanks to all. smilewinkgrin


Jackie, 43

Pancolitis, DX October 06

Lexapro, colazal 3x3, Sythroid, Protonix, Flagyl

10 infusions of Remicade- doesn't work
Severely anemic-

back up to 30 mg of pred
Added 6MP- November 25th
Surgery almost certain

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 12/22/2008 10:25 PM (GMT -6)   
If you're able to get in a good cardio for at least 30 minutes a day AND cut out refined sugar and white bread you'll no doubt lose weight quickly. What you eat and how much you exercise will be key in losing weight...safely of course...drinking tons of water as well will also aid with your weight loss.

Good for you!!!

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

Veteran Member

Date Joined Dec 2008
Total Posts : 510
   Posted 12/22/2008 10:32 PM (GMT -6)   
am new to colits.. but I feel for you hang it there. I imagine we all might be there some day. Be strong and work for it. I personally am still in my intial flare, but I can already tell how horrrendous this disease is. Have been tryin gluten free diet for a little over two weeks now. and just today decided to add this spinach/ sunflower seed idea. Can't hurt and the two diets mesh well together. Gluten free seems to have helped. Hopefully this spinach idea will take me the rest of the way.
Be strong.... be an inspiration to the rest of us. We already admire what you have been through. Good luck and best wishes. and TRY to have a good holiday season.
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten

Regular Member

Date Joined Oct 2008
Total Posts : 67
   Posted 12/23/2008 11:26 AM (GMT -6)   
Sorry to hear you're suffering so bad! I take it you're quite aneamic from the symptoms - are you taking some irons supplements, and do you know what your hg count is?
UC - diagnosed Sep 2008 - awaiting colonoscopy to determine extent
Omeprazole 2 x 20mg
Prednisolone 15mg
Calcium (Adcal-D3) 1500mg
Mesalazine 8 x 500mg
Mesalazine foam enema
Multivitamins x 2
Omega 3

Veteran Member

Date Joined Aug 2007
Total Posts : 2202
   Posted 12/23/2008 1:44 PM (GMT -6)   

Have you asked your doctor about I.V. iron infusions? This would help the anemia and fatigue.

Since none of the traditional meds seem to be working very well, I'm wondering if you've tried alternative methods? Dietary manipulation? Probiotics? Omega-3 to reduce inflammation? There are alot of non-medical approaches that can actually help the meds work more effectively.

Diagnosed with ulcerative colitis spring 1999.
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.

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