What kinesiology class would be safer to take? And lots of other Q's!!!

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PinkBible
Regular Member


Date Joined Jul 2009
Total Posts : 37
   Posted 8/18/2009 4:06 PM (GMT -6)   
I signed up for a 1hr tennis/raquetball class toward the beginning of the summer. It puts me up to 18 hours which is kind of a safety net so I can drop a 3 hour class if things get too rough and keep the 15 hours I need for scholarships.
 
My whole deal is that my UC has not really gotten any better this summer. I started pred in December, 30mg and I started tapering every 5 days, then every 7, then it became a 2 week thing (see the trend?). My bleeding stopped right before class started (Thank God) and I finally got down to 10 mg. But as soon as i dropped to 7.5 toward the end of the semester my problems started again and I would have intermittent periods of bleeding with a few good days (D but no blood) so I had to go back up to 10. Then summer started and I was bleeding again. Then I finally stopped bleeding a week before the doc put me on 40mg of pred because I was still having the urgency, D, and 4-6 BMs a day.
 
But now I've been on 40mg of pred for nearly 2 months (June 24), and the only real improvement I've had is going about one less time per day and maybe a little less urgency. I had a colonoscopy last Tuesday (Aug 11) and it actually looked good except for the last 6cm so I was put on Canasa. I go to the doc tomorrow and 6MP has been a major consideration. I've already had the blood work and everything (8 vials! gah!)  And I know that takes about 3 months to work, so basically I'm not going to be any better before I move in to college this Saturday and I've come to realize it might be the end of the semester before I'm finally in remission.
 
So back to my first question, with good days of going twice, and bad days with 6 or 7, do you think I could handle tennis/racquetball at 8 am Tuesday/Thursday or should I switch to a weight training class at the same time? I was kind of worried about running around at 8 am since I'll be on the Canasa for a while and those go in right before bed. lol...
 
Also, based on everything, what can I really do to get better? How bad is the 6MP?? Is there hair loss and fatigue like with the cancer patients who take it?
 
Oh, and I know prednisone can thin your skin, do you think that's a possibility for me based on how long I've been on it? I feel like I can see all my veins..But I'm kind of pale anyway. No stretch marks, no weight gain. Got the moon face about 3 weeks ago, I get shaky sometimes, and I have to pee twice a night every night but no diabetes (checked twice).
 
I'm an 18 yr old girl. Turn 19 soon and start my 2nd year of college next week. Diagnosed a year ago. Doc said it goes halfway across the transverse colon when first diagnosed. I think mine is classified as moderate, maybe moderate/severe because of how poorly I'm responding to the pred and he was worried about me being steroid dependent :-/
 
And I haven't noticed any trigger foods. I did the naughty thing and had a sonic coffee when studying late one night and had no reaction. And I did starbucks one night with no problems. But that's the only serious caffeine I've indulged in since my doc told me to stay away from it.
9 colazal (switched from 12 asacol about a month ago)
40 mg pred
folic acid
vitamin d  & a
vitamin C most days
yaz for cramps
allign once a day
 
SORRY TO RAMBLE! I'm just frustrated because I was supposed to be better by now, especially before school starts...

Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 8/18/2009 4:26 PM (GMT -6)   
Thinking back on taking those classes, I would probably rather be in the weight training class while in a flare, rather than in the middle of a racquetball match lol. Of course, with racquetball you don't have time to think about being in a flare or else you get hit up side the head with a blue ball.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/18/2009 4:44 PM (GMT -6)   
What if you add in a 5ASA or steroid enema, and then use the Canasa in the mornings (on those mornings you DON'T have a sports class!). You also might just need a higher dose of pred to do the trick. Some people have to go up to 60 mg to get everything healed and then wean down from there.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


PinkBible
Regular Member


Date Joined Jul 2009
Total Posts : 37
   Posted 8/18/2009 4:51 PM (GMT -6)   
Enemas sound scary to be honest. I've only done them once and that was a couple of fleet enemas for the prep for my first colonoscopy and it was NO FUN. lol..but I know they're not supposed to be fun.

It seems like it would be hard to keep the Canasa in if I did it in the morning because as soon as I wake up I have a rather gassy/urgent BM and I see the remnants of the med come out. Isn't canasa a 5ASA med? I'm just assuming because of the -asa ending.

I've had two friends do the 60mg (one with UC, the other with Crohn's) so I know how rough it can be. I would really like to get off the pred, but if that's what it takes, then I guess that's what it takes.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/18/2009 4:54 PM (GMT -6)   
Fleet enemas are totally different, though, since they're designed to make you poop. Canasa is a 5ASA, but the enema will go up so much higher, and the topical rectal meds (suppositories and enemas) are actually much more effective at treating the inflammation than the oral meds. So by using the enema, you'll be treating a larger portion of your colon in a much more effective manner. I honestly don't find the enemas that bad at all. You could use the canasa after your morning BM.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


PinkBible
Regular Member


Date Joined Jul 2009
Total Posts : 37
   Posted 8/18/2009 5:01 PM (GMT -6)   
Would it be worth it if my last colonoscopy only showed problems in the last 6cm though? And, um, how exactly does one go about using enemas like that? Is it a get in the downward dog and squeeze something up there like the fleet or what?

The dorms are suite-style, so I'm only sharing a bathroom with 3 other girls, but I can't exactly hog the bathroom all the time. And it's a little embarassing. Although, I was able to do a 30 day course of the Canasa last semester without anyone knowing. (It made me feel nice and sneaky...gloves, vaseline, and meds in a little black make-up bag..oh yeah, I was a ninja)

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/18/2009 5:08 PM (GMT -6)   
Well, maybe....I sort of missed that part! Maybe you could do canasa AM and PM?
I lie on my left side, on a towel (in case of leaks, etc, because mesalamine enemas stain), on the bathroom floor, and reach around and squirt it up there. Then I hurry and wash my hands and jump into bed, also lying on my left side and stay that way for at least 30 minutes (I usually fall asleep before then, though). You're probably technically not supposed to move for the 30 minutes, but I don't want to do it in bed for fear of a bottle breaking and ruining all of my bedding and I want to wash my hands before bed, and there's no way I'll stay on the bathroom floor for that long.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/18/2009 5:57 PM (GMT -6)   
Considering my energy level when flaring, I'd go with the weight training. Running around would have just put me down.
Judy
 Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001. Flared for 5 years, finally in remission with Remicade since March 2006. Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
Avascular necrosis in both shoulders is  my "forever" gift from steroids.
Chronic joint/connective tissue/muscle pain; TKR 05/09 
"My life is an ongoing medical adventure"
 


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 8/18/2009 7:58 PM (GMT -6)   
I've asked a lot of birth control questions on here, and lots of people complained about Yaz. Have you thought that might be making things worse? Did you notice things get worse UC-wise when you started it?

Also maybe do an enema at night and a suppository in the morning? A suppository might be easier to keep in while exercising lol. Or if it's hard, maybe you could just sneak away and do it after that class. The enemas aren't bad, there isn't much in the bottle. If you make sure to squeeze out all the air beforehand, it's much better.

I would probably do weight-training too, or just no kinesiology class. Unless it's required I guess.
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


PinkBible
Regular Member


Date Joined Jul 2009
Total Posts : 37
   Posted 8/18/2009 8:08 PM (GMT -6)   
I've been on the yaz either 3 or 4 years but I've only had the colitis a year. I'll ask my doc about it though.

I just need it for my degree and I'm trying to get it in 3 years so it'd be good to get it over with.

sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 8/18/2009 8:40 PM (GMT -6)   
I'm not sure if the Yaz would affect the UC if you started the Yaz first but I don't see why it wouldn't. Maybe you could start another topic about it in addition to talking to the doctor. When I suggested to mine that my birth control might be affecting things she said, "hormones can affect things" and left it at that. Duh! lol that's why I asked her. Good luck!
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


PinkBible
Regular Member


Date Joined Jul 2009
Total Posts : 37
   Posted 8/23/2009 9:18 PM (GMT -6)   
Doctor still hasn't changed my meds. Grr! But, I go back in 3 weeks and after this last appointment he did a bone scan since I've been on the pred so long and the next day I had a small bowel follow through where you drink the barium stuff. He just wanted to check for ANY signs of Crohn's but he highly doubts there's any Crohn's. I should get the results back tomorrow or the next day.

I asked him about the yaz and he said it couldn't hurt to stop it and see if it makes a difference. I'd rather have cramps than a UC flare lol

I think he's leaning more toward the Remicade which scares me. I think the 6MP seems safer even though it takes a lot longer to see results.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 8/24/2009 7:01 AM (GMT -6)   
     I would try the 6MP first too.  I've been on 6MP for seven years.   I was able to achieve complete remission for two years after being on the 6MP along with prednisone for three months.  However, I had a lot of stress in my life, as do most people, and the UC (I should say UP because it is in my rectum and not the rest of my colon) and started getting flares mostly every year.  My dose of 6MP was usually 50 mgm for the  maintenance but this past flare the doctor increased it to 100 mgm.  He should have kept closer tabs on my white count instead of waiting an entire month and my white count dropped from 4. 0 to 1.6....not GOOD.  He immediately took me completely off the 6MP to see if my white count would go up on its own.  I had it drawn on Friday, so don't know the results yet.  I am slowly coming out of the flare.  I believe the Cort enemas and Canasa are helping the most. 
     I refuse to go on Remicade.  Read too many horror stories about it and in most cases the symptoms of UC come back.  Plus I was exposed to the TB virus back in the 60's and test positive on the skin test for TB.  It is not active in my system, negative chest xray, but Remicade can activate the virus...so, not taking that chance.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 8/24/2009 4:25 PM (GMT -6)   
I agree, I would also try 6mp or Imuran whatever first and go off the Yaz. Or maybe switch to a birth control with lower hormones. But if you're not having sex I'd just say to go ahead and go off of it.
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome

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