Bad news for Hello Kitty?

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Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/3/2009 3:22 AM (GMT -6)   

This morning I had some blood in my poo? I don’t think any one can really help me other than giving me more meds advice. I am trying to get hold of the GI doctors, but they do not answer their phones. I went to the GP yesterday but they really didn’t give me great knowledge on what to do with my meds. I guess I could go on the maximum recommed dose which it says on the bottle. I am a bit heart broken, Every thing was going really well for 3 months.  

 

I’m also thinking about giving up my job and working part time until I get better. It’s a bit scary for me to do and I know my family will be shocked. It’s a shame because I have a good job, but I am so tired and worn out that I just need a 6 month rest, a correct diet and correct meds

 

I know because of my health I will be made redundant anyway in 6 months. The company is going to close my store. I bet if my health was good I would get a better store to run, but as Ive been sick I bet I will be made redundant.

 


Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 6/3/2009 9:11 AM (GMT -6)   
I've found aloe and l-glutamine to be helpful for gut healing and to address bleeding. In the book, Listen To Your Gut, there's a recipe for a healing implant enema - a retention enema - that would probably be helpful, although I haven't tried it personally.

Healing takes a lot of time and energy. Getting plenty of rest and avoiding stressful situations is key. I'd say if you're able to cut back to part-time financially, it would be an excellent choice, allowing you to concentrate more fully on getting well.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/3/2009 9:15 AM (GMT -6)   
Do you drink aloe vera juice? What is your daily routine?

Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/3/2009 9:20 AM (GMT -6)   

Finally got a hold of a GI consultant. They said to increase the pentasa to 1 a day. Instead of ½. They also said they are not worried about the blood as I had a formed stool and have only been going to the loo once or twice a day. I’m still worried, everytime I get a bit of blood I think I have cancer. It doesn’t help that I didn’t feel well enough to go to work today. I really wish I did. I don’t like sitting on my ass at home feeling unwell.


Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/3/2009 10:08 AM (GMT -6)   
Do you think your blood could be because of hemmies? Internal ones usually don't hurt.

Also, don't worry so much! Blood in the stool (especially when one has UC!) doesn't equate to cancer!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa every other night, Culturelle probiotic, and Zoloft (25 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 6/3/2009 10:45 AM (GMT -6)   
Kitty....do you have the actual box from the manufacturer of Pentasa?

500mg won't do a thing for you...I'm not understanding why you're not on a proper dosage of at least 3 tablets daily.

Please do the research and then call them back to enquire.

Ask for the rectal enemas and see if that helps if they won't increase your oral dosage.

I'm gob-smacked!

q
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/3/2009 11:36 AM (GMT -6)   
The Pentasa says Slow release tablets 500mg= Take TWO TWICE a day MAXIMUM.

they are made by

Ferring Pharmaceuticals Ltd
The Courtyard Waterside Drive Langley Berkshire SL3 6EZ (uk)
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 6/3/2009 11:51 AM (GMT -6)   
You take a pretty low dose in my opinion. I take a lot more than 1000mg a day. Maybe you should try some rectal meds?
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 6/3/2009 12:45 PM (GMT -6)   
Hellokitty said...
Do you drink aloe vera juice? What is your daily routine?


I take one or two 1/2 cup doses of George's aloe a day for maintenance. I've been mostly in remission for a long time, though.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/3/2009 12:47 PM (GMT -6)   
I do drink alovera juice
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 6/3/2009 2:32 PM (GMT -6)   
It seems like once they increased my meds it would take a little while to get back in order. I'm sorry you feel so tired. That is really the hardest part... we seem to get over the pain pretty easily but when we can't do normal things like work a normal job like everyone else... it really gets to us.
I got over the blood pretty quickly. Because we have colonoscoplies so often, they are going to find cancer faster for us than with anyone else. You don't need to stress over colon cancer with all the rest of what is going on.
Good luck making your decision on work. It is a hard one.
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Meds just stopped working so I took the problem out! No more colon and all kinds of excitement!


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/3/2009 2:42 PM (GMT -6)   
Conventional wisdom would say you need to visit your GI for this. The 5-ASAs aren't working, so corticosteroids may be needed. Call your GI ASAP
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/3/2009 3:10 PM (GMT -6)   
You're just taking 1/4 of the dose that you can, so I don't agree that the 5-ASAs aren't working. Is the Asacol you're using a rectal med? If so, you should really use that every night. If it's not a rectal med, you really need to be on one!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa every other night, Culturelle probiotic, and Zoloft (25 mg).


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/3/2009 3:32 PM (GMT -6)   
Im scard of steroids. I know the side effects.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


bettylou
Regular Member


Date Joined May 2009
Total Posts : 141
   Posted 6/3/2009 4:13 PM (GMT -6)   
I agree with others who are suggesting you get a prescription from your GI for rectal meds ASAP. I've found them to be fantastic in a situation like yours where you see blood but still have formed stools etc... I have Pentasa in both enema and suppository versions and keep them at home to use as and when I like. There is a chance your GP would be prepared to prescribe it - especially since you already have oral form - so give them a try tomorrow. Otherwise, get yourself down to the next IBD clinic at the hospital. Don't go down the steroids route unless you really have to... it's not fun and messes up your body in all kinds of ways. When I saw blood like you earlier in the year I was incredibly depressed that I was relapsing so quickly after getting into remission, but the rectal meds sorted me out fine. Good luck!
Ulcerative Colitis: diagnosed as moderate pan-colitis August 2008. Prednisolone saved me.
Current meds: Azathioprine (100mg); Asacol (too much - 6 tablets twice a day); Pentasa enemas and suppositories as needed (both great).


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/3/2009 4:25 PM (GMT -6)   
ok I will ask about rectal meds, do you have any brand names. The asacol I use is a rectal one.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/3/2009 4:30 PM (GMT -6)   
Ok, I thought I remembered saying the Asacol was a rectal med...here in the US, we all know Asacol as the oral version of mesalamine and Rowasa as the rectal. Is your Asacol an enema or suppository? If it's a suppository, I think an enema might do you more good. Also, you should probably use it every night instead of every other night...what does the prescription say for that?

If the Asacol doesn't help (after you've been using the enema form every night for a couple of weeks), then you could ask for a steroid enema or foam. I don't know what the brand names are in the UK. Your doctor should know what you're talking about if you say you'd like to try a steroid enema. If not, get a new doc!

And honestly, I'd up your pentasa as well...I mean, even at 1 pill a day you're only taking 1/4 of what your prescription is written for.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa every other night, Culturelle probiotic, and Zoloft (25 mg).

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