If it's good news, why do I feel bad?

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Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 10/16/2008 2:17 PM (GMT -6)   
Had my C-scope on Monday and it seems my colon is pretty well healed, although my rectum is still pretty bad (GI said he'd call it a "7" where 10 is extremely ulcerated) and a bit above that is a "1." I started back with Rowasa Tuesday night. Kept it in all night, felt a bit better the next day. The fullness down there I had been feeling abated somewhat, although I still felt a bit nauseated in the morning for a couple of hours, nothing too bad though. Last night for some reason I just couldn't hold the Rowasa; it kept "bubbling" out even though I tried blocking things up with paper towel. At least it contained the mess somewhat. This morning I felt awful -- I hadn't slept well, I felt nauseated for most of the morning, went to the bathroom numerous times ...

My GI gave me two prescriptions, one for the Rowasa and one for Canasa. Said the Rowasa was much more effective. I am still using some Rowasa I had from awhile ago that is still good so I haven't filled either. If I start with Rowasa and can't keep it in, can I then use the Canasa on the same night? Or am I just SOL? I have a follow up with my GI in a week, but I was wondering what you all know about this.

Mainly, if I have apparently had success with Remicade and am mostly healed, why am I still feeling like crap most mornings and why am I still feeling really run down? I had a blood test just a few months ago and iron and vitamin stores were within normal ranges. I will likely get more bloodwork done next week as my GI is good about that. I was looking at mesalamine information again and saw that liver and kidney function should be tested perdiodically so I intend to ask if that's been done and if not have it done.

I used to work out daily at the gym but haven't in more than a year, maybe even two. It's been six months since I weaned off the Prednisone but the few times I went to the gym over the last month I haven't been able to complete a work out. The most I have been doing is long-ish walks with my dogs most afternoons. Today I came home and crashed for a couple of hours though.

It's very frustrating. I had gotten myself emotionally ready to pursue the surgical route, and then my colonscopy cameback rather hopeful, but I am still not feeling well, so I just don't get it. I had always been an active person and very healthy. I miss feeling well! It's kind of depressing. My husband is EXTREMELY supportive, but I feel like a slacker around the house. I am pleased that I have managed to keep up with my business and it's thriving despite how crappy I feel most days, I just tough it out and get out and work.

This forum is awesome, thanks in advance for your feedback.

Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08
10 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Tylenol Arthritis Formula or Tramadol as needed for arthritis pain; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;
Past meds: Prednisone 4/06-4/08; Entocourt EC; Rowesa; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/16/2008 3:34 PM (GMT -6)   
((((((((((((big hug))))))))))))))))) I am not sure why, lots of reasons can make you feel bad, from the meds to the disease, to vitamin deficiencies. Have you been checked for b-12?

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/16/2008 5:40 PM (GMT -6)   
Meesh, what does your GI say about your tough mornings? I feel like you- not bad, but mornings still pretty much stink & I'm tired a LOT... I think the tiredness is just a side efect of the meds for me, although you're not on any immune suppressants, right? I think mine is due to the seemingly gigantic dose of Imuran I take... But one would think the Remicade would help with the mornings- if things look basically ok, then why the urgency? hhm... good luck with the enemas- I haven't done one in a long time. I can't do them anymore, I just hit a wall when it comes to those things. They do help, don't get me wrong. Perhaps at your follow-up appt. tell your GI exactly what you've told us- why are you still feeling so horrible, is surgery worth looking into, what's the deal?!?!?! I know that active disease kicks up your metabolism more than when you're not flaring, which can make you tired. If you're not eating much on top of that, I suppose it could really knock you for a loop... sigh... but I empathize! What's that old saying, "I'm sick & tired of being sick & tired!"
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 10/16/2008 5:46 PM (GMT -6)   
You know, I am exactly like you.  I had a scope the last week in august and my GI told me I was 90% healed....I said wow thats great, why do I still feel like crap, and have the symptoms.  I don't have the huge red toilet, but intermitant blood, some cramping and some days when I dont even feel like talking.  Other days,totally random I must add....like today, I feel like superman and this thing might be behind me...It's very frustrating.....I know how you feel and it is just part of the deal I guess...I hope you have many more good days than bad.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/16/2008 6:37 PM (GMT -6)   
I'm the same way, Meesh. I had surgery scheduled and withdrew from classes b/c of it; I had gone for upper and lower scopes to make sure I didn't have Crohn's and what we found was that Remicade healed everything but the last few centimeters. My GI was very confident that rectal meds would send me into a full remission quickly; it's been a month and a half since my scope/starting rectal meds and I'm still not in remission yet--I still have a little blood and definitely have morning urgency. It's very frustrating.

Female, Age 20
9 Asacol, Rowasa, 1000 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, 1 Anucort
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 10/16/2008 6:40 PM (GMT -6)   
I do plan on talking to my GI about all this, but the appt is a week away, so just was hoping for some feedback here, and yeah, sympathy, so thanks for the hugs and kind words.

Eva Lou, Remicade is an immune suppressant.

Also have had a chronic cough since June and my primary can't figure out what it is. I do have the name of a pulminary specialist, but I don't really want to see yet another specialist. Besides, I Googled "ulcerative colitis + chronic cough" and apparently it's related. I'll get to the bottom of this yet. I am wondering if I should just push through and force myself to go to the gym and work out, within reason of course. Perhaps if I do that I'll start feeling better?
Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08
10 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Tylenol Arthritis Formula or Tramadol as needed for arthritis pain; Rowesa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;
Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/17/2008 7:34 AM (GMT -6)   
right, I know that Remicade suppresses the immune system, but I meant any other drug solely to suppress your immune system. Know what I mean? Like 6MP, Imuran, etc. Anyway, I do hope you get to the bottom of this soon- it's disheartening to feel that this is as good as it gets. Who knows, maybe just living with a chronic illness takes a toll on one's body, & over time, you just wear down more than a person who isn't chronically ill. Because even if we go into remission, would we still be considered chronically ill? We'd still have UC, so.... not to be a downer!!! It does seem like a lot of us right now are in the same boat & not really sure why. I can deal with how I'm doing, but... And then again how much of it is just general aging? Try the gym- wait 'til you have a good day or so to recover, if need be, & see how you do when you really push yourself.  I'll be anxious to hear what your GI says. Keep your chin up!



diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 10/17/2008 10:31 AM (GMT -6)   
Thanks Eva Lou. No other immune suppressants besides the Remi. I couldn't tolerate the Imuran. I actually felt great today. Kept the Rowesa in all night and woke up after a solid night right before my alarm. I am treasuring feeling good today and without over doing it trying to get a little ahead on tasks that need to be done so that when the bad days come I won't have so much to do.
Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08
10 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Tylenol Arthritis Formula or Tramadol as needed for arthritis pain; Rowesa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;
Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro

Post Edited (Meesh) : 10/17/2008 11:00:56 AM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30611
   Posted 10/17/2008 10:59 AM (GMT -6)   
Awesome news Meech!!! You ve a lot to heal, and the rectum is really the worst and longest to heal...

You might want to consider to try the Canasa during the day in the afternoon...that might be enough to help calm the rectum enough for you to be able to hold the Rowasa in all night.

The other options could be to ask your doc for dicyclomine which is an antispasmodic...to help calm the gut a bit...use it before bedtime about an hour before using the Rowasa.

Hope you continue to feel better...

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~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 !!!
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 10/17/2008 11:14 AM (GMT -6)   
Hang in there, Meesh! Remember that the c-scope causes friction that irritates the colon as it passes thru-- so you will need some more time on rectal meds to heal what was already ulcerated. Getting to remission can be a slow progression of finally having more good days than bad ones-- rather than suddenly feeling marvelous & staying that way. The trick is to balance dietary, meds, supplements, rest, & exercise needs with household & work routines so that you never (or rarely) get frazzled. Best wishes for you to get the rectum healed ASAP & achieve remission. It sounds like you're in a better place now than 2 yrs ago & that's important. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 (generic) Colazal daily for maintenance of remission)

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/17/2008 11:22 AM (GMT -6)   
I'm so glad that today has been good for you!

I'm in the same spot - scope was good, mild inflammation, but I still feel like HELL most of the time. Crazy tired. Urgency. The list goes on...

I hope tomorrow is a good one! (and the next day and the next day...)
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Mild Flare
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and a probiotic
Remicade: 1st infusion 06/17/08:  Next infusion: 12/02/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/17/2008 3:01 PM (GMT -6)   
Remember that the rectum is the last area to heal. Although I had no bleeding, D or pain within three weeks of starting Remicade, it took another four to five months for the urgency to completely go away. My energy level came back over the first year. Your body has been working overtime running your over-active GI system and having to continually make new blood and fight off infection. It's understandable that it will need some time to recuperate and get back to a more normal energy level.

I know it's hard, but try to be patient. UC didn't tear you down in a month (even though your symptoms may have appeared suddenly, it had been in there for a while working on your colon), and it won't clear up all at once either. Enjoy the progress you have and let your system have the rest it needs to replenish itself.
Judy
 
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.


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 10/17/2008 3:25 PM (GMT -6)   
You guys are all so awesome!!! Thanks for the support and advice.
Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08
10 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Tylenol Arthritis Formula or Tramadol as needed for arthritis pain; Rowesa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;
Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/17/2008 4:02 PM (GMT -6)   
Be sure you check your iron and B-12, and even Vitamin D. There must be a reason why you were still dragging. I hope you have more good days!!
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 first, now Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 10/19/2008 6:48 AM (GMT -6)   
Been feeling okay last few days. I even raked the yard yesterday and had a cocktail last night and feeling fine this morning. I guess the Rowesa is doing its thing. I plan on filling the Canasa 'script as well though for nights that the liquid is too inconvenient. I find if dinner is on the late side that's when I have trouble holding it in.

Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08
10 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Tylenol Arthritis Formula or Tramadol as needed for arthritis pain; Rowesa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;
Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro

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