so glad to meet you all.

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poopy67
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted Today 9:46 PM (GMT -6)   
I must say misery loves company!  confused  I mean that in the dearest form to all of you who sound just like me. For the last few months I have felt like the only person in the world cursed by the d, the blood, the urgency, the helplessness and all of the other ect..ect...but I must say after finding this sight I do not feel all alone. Thanks to all of you. blush I have read all your thoughts and input and must now put my own 2cents in. I am a 10year UC. I have had every thing all of you have had and it is so very sad that we are still all trying desperately to figure it out. So far I have been trying to fight off the medication side for  a long time. I feel like taking them and having all the same problems makes no since to me.. What I want, must be a miracle! I have had actual good results taking a table spoon of extra virgin coconut oil everyday. That is a real thing that I am having good results with. I just started taking probiotics and am hoping for good results from them. I am also just now taking a vitamin k. I am also going to start taking steps in going as organic and wheat free as i can. If any or all of this does any help I will let you all no.
I would also like to know from all of you some questions for my own personal research. OK here it is.
1. How many of you notice flare ups in the spring summer of the year?
2. How many of you feel like fiber makes you worse?
3. How many of you are overweight. (like me)
4. How many of you as children held going to the bathroom till you where safe at home? no matter the length.
5. How many of you are worry warts.
6. How many of you think that a water source of some kind started the hole flare ups.
7. Do any of you have or had leg cramps or a aches as a child or currently.
8. Can any of you add to this list. good luck to all of you and maybe if we all get together we can skip the Dr.s and find out what really works.
 
 

Arc
Regular Member


Date Joined Jun 2009
Total Posts : 25
   Posted Today 10:05 PM (GMT -6)   
Uh let me see....

1. I have not seen this pattern in my flare ups. The first was mild build up that did start in summer but was not really bad till fall. Second flare up which started serious and is staying serious started in May so that is a spring/summer time thing.

2. Fiber makes me A LOT worse during a flare up. Could be that I am taking it wrong or something but I tried many over the counter fiber products like Metamucil and Citrucel and they made my flare up extra runny and explosively dangerous.

3. 6'1 at 170. Not overweight.

4. I had a problem not with pooping but peeing. I always tried to hold it as long as possible with very messy results. Pooping was never an issue.

5. I am most definitely a worry wart. Ask any of my friends. They say I never NOT worry.

6. Water being the sole source of flare is a bit too sketchy for me. True what is in water might have affected it but I cannot place blame on a singular source....far too cynical for that.

7. I often had bad leg cramps as a child and now with IBD I also have a very painful right leg that several of the doctors I went to said could be a result of IBD making my joints flare....or something like that.

8. How about activity? I am not a very active person so I sit...a lot. I wonder if this has something to do with anything.
Diagnosed in November of 2006 with UC (ileitis) though I had symptoms ,which were misdiagnosed as IBS and hemorrhoids, nearly 6 months before I finally went to a GI. Also have a bad arthritic right leg that hurts in my hip joint....at least I think it arthritis though it could be directly tied to IBD.
 
Colonoscopy in November of 2006 and took part in a Prednisone and Asacol taper program.
 
No serious flare ups just moderate ones for nearly 3 years. It was nice....
 
May 2009 experienced first serious flare up and now on prednisone 30mg daily and waiting for my next colonoscopy....yay.


Yavw
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted Today 10:19 PM (GMT -6)   
Interesting points, I did hold bm's when I was a kid, don't know if that has anything to do with it. Also, I first noticed the bad abdominal pain that I now know is uc when trying to hold peeing, I'm a truck driver so that happens a bit, I wonder if that contributed to getting uc. In my short time having it, I've stopped taking meds altogether, and I've found that probiotics help immensely. So much so that I'm mostly in remission, and sometimes I go fully into remission, with boswellia also. And I used to stress about things bad too, but I've really worked on it, and I do think that can makes symptoms worse. It seems to me that it helps to cope with stress by "mentally disengaging" the physical effects that occur when stressed out, that's the best way I can explain it.

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted Today 10:24 PM (GMT -6)   
Welcome Poopy67 and Arc to Healinwell! :-) We are glad to have you, but hate that you are here under these circumstances. You've asked some great questions Poopy! I'm mostly in remicade remission, but I still have my days.

1. Sugar or processed food adds to my looser stools or increased stools
2. Fiber does not bother me
3. 5'5 154 lbs.; not overweight but not underweight either...could always stand to lose a few!
4. Yes, always tried to hold it. I hated pooping in public.
5. Not a worry wart, but tend to hold things inside (thanks Mom! but love you!)
6. Yes, I think I may have contracted it from a lake during very warm weather (bacteria), but that's all my theory.
7. No leg cramps
8. I exercise pretty much every day...that's because I always need to take off those five pounds! ha..

Also, I just added Vitamin D to my ritual; I think it's helped with the gas. Might want to give that a try as well. Again, welcome!
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted Today 10:25 PM (GMT -6)   
Hey, and welcome Yavw! I missed your post since I was typing at the same time you were posting...glad to have you!
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 6/23/2009 12:58 AM (GMT -6)   
Hi there...welcome to the forum!

Where in the colon is your UC...throughout or limited?

What medications have you been on?

q
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 6/23/2009 2:19 AM (GMT -6)   
     Hi poopy and welcome.  Gee, we can all relate to your name....have anything more original?  LOL!
 
     1. First diagnosed in fall of 1998.  Flares for me are more frequent in spring and fall.
     
      2. When first noticed symptoms I happened to be following the Atkins Diet....no carb, high protein.  Doc said just a coinicidence but I still think it contributed.  Tried fibercon and low and behold wound up being hospitalized.  Fiber is a BIG no no while flaring...however, I have some info on this from my nutritionist....I will list it further down.
 
      3. Not overweight....5 ft 4 in . 123 lbs.
 
       4. As a child, always a worry wart, school work, social life.  Had constant constipation.  Remember mom giving me enemas when I was only five years old to "clean me out".  Also family doctor was big believer in antibiotic usuage.  He gave penicillin for colds and when I became allergic to that he started with the erythromycin.  Now I KNOW that didn't help.
 
       5.  Been drinking bottled water for a long time.  Don't know whether it has any effect or not.
 
      6.  Yes, did have leg cramps as a child which were sluffed off as "growing pains".  Remember, I was a child of the 50's.
 
      A few more things, hereditary.  My paternal grandmother died from cancer of the bowel at 65.  At least they said it was cancer.  This was in 1952 when not many people spoke of such things.  I do know that she bled constantly for almost two years (she lived with us).  She really suffered.  Now I am thinking she had UC and they didn't know how to treat it.  Dad suffered with diverticulitis and was operated on for a "pouch" which developed and almost burst.  That happened in 94 and he died in 95.  He refused to go back in the hospital and his coloring was grey.  I do think he had a hidden cancer too, but he was a stubborn soul.
 
      By the way, I tried the gluten free bit....no effect.  Was tested and I am not intolerant to it.  Oh, the fiber stuff.....saw a nutritionist last year after being hospitalized and she suggested taking 1T of Red Mill ground flaxseed meal on top of your rice krispies in the morning and maybe again on yogurt for lunch.  Seems to have a positive result with me.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 6/23/2009 8:09 AM (GMT -6)   
poopy67 said...

1. How many of you notice flare ups in the spring summer of the year?
2. How many of you feel like fiber makes you worse?
3. How many of you are overweight. (like me)
4. How many of you as children held going to the bathroom till you where safe at home? no matter the length.
5. How many of you are worry warts.
6. How many of you think that a water source of some kind started the hole flare ups.
7. Do any of you have or had leg cramps or a aches as a child or currently.
8. Can any of you add to this list. good luck to all of you and maybe if we all get together we can skip the Dr.s and find out what really works.


Hi poopy,

1. Haven't had long enough to answer that.
2. I didn't think fiber made me any worse, might helped if anything.
3. I'm not overwieght
4. yep I did that as a kid
5. yep a worry wart
6. I don't think it was water, more like stress seem to trigger it for me
7. not really

mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 6/23/2009 8:29 AM (GMT -6)   
1. How many of you notice flare ups in the spring summer of the year?
My flares arent seasonal...

2. How many of you feel like fiber makes you worse?
Fiber supplements definitely make me worse.

3. How many of you are overweight. (like me)
I am not overweight - actually I am in good shape, however I fluctuate +/- 20lbs easily during prednisone treatments.

4. How many of you as children held going to the bathroom till you where safe at home? no matter the length.
I used to go to the nurses office and fake being sick so I could go home and poop.

5. How many of you are worry warts.
I am an excessive worry wart.

6. How many of you think that a water source of some kind started the hole flare ups.
Possibly but I cannot say for sure...there are many theories I would consider for my trigger.

7. Do any of you have or had leg cramps or a aches as a child or currently.
Some but I dont think anything out of the ordinary.

8. Can any of you add to this list. good luck to all of you and maybe if we all get together we can skip the Dr.s and find out what really works.
I was cholic as a baby.... I had strep throat a lot and was on lots of penicillin.

Not sure I can add anything else that would establish a common pattern that already hasnt been mentioned although I did have hormone issues due to a pituitary tumor but that doesnt sound like a common thing that could establish a pattern.

Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:No longer on Pred as of 6/15/09, 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections monthly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"

Post Edited (mbx5) : 6/23/2009 9:27:02 AM (GMT-6)


poopy67
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 6/23/2009 8:41 AM (GMT -6)   
thanks so much for all of your input. Few things the same. Holding it as a child, spring flare ups and leg cramps. I once had a Dr. say that we are all different but i think that maybe we are more alike than they think. some other things i thought of is that i can no longer lift or like rake the yard if it is strenuous. I am also allergic to penicillin. I have made it my life's mission to make sure my kids can poop anywhere. I really think we stressed out the walls of our colon by holding it. As for meds I have been on prednisone and asacol and sulfa zine off and on for years. I got bad staff infection on my leg from the prednisone.  I am confused about the enemas that some of you are doing. Why and how come? I also drink bottled water but can drink water from home just when i am traveling i use the same bottled water. I plan to start really working on this and hope that all of you can help me. I will be traveling for the next couple of weeks so i will try to check with all of you as often as possible. Of course i am worried sick about the airplane but i think i will try Imodium for the first time. I also wonder if i should get on a mild nerve pill?

Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 6/23/2009 9:02 AM (GMT -6)   
1. How many of you notice flare ups in the spring summer of the year? Yes
2. How many of you feel like fiber makes you worse? No
3. How many of you are overweight. (like me) No
4. How many of you as children held going to the bathroom till you where safe at home? no matter the length. No
5. How many of you are worry warts. No
6. How many of you think that a water source of some kind started the hole flare ups. No
7. Do any of you have or had leg cramps or a aches as a child or currently. No
8. Can any of you add to this list. good luck to all of you and maybe if we all get together we can skip the Dr.s and find out what really works.
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


Kayspain
Regular Member


Date Joined Jan 2009
Total Posts : 39
   Posted 6/23/2009 1:03 PM (GMT -6)   
 
1. How many of you notice flare ups in the spring summer of the year? Yes (Spring)
2. How many of you feel like fiber makes you worse? Yes
3. How many of you are overweight. (like me)? Yes
4. How many of you as children held going to the bathroom till you where safe at home? no matter the length. Yes
5. How many of you are worry warts. A little probably
6. How many of you think that a water source of some kind started the hole flare ups. No
7. Do any of you have or had leg cramps or a aches as a child or currently. Yes as I child (told they were growing pains)
8. Can any of you add to this list. good luck to all of you and maybe if we all get together we can skip the Dr.s and find out what really works.

37, Female
Proctitis in 2000
Diagnosed in November 08 with colitis (By surgeon)
Medication
Dipentum Olsaline Sodium  Mexavant XL - Mesalazine
Ciprofloxcin  Predfoam Rectal Foam 20mg
Nexium 20mg Daily
Iron Supplements
Probiotic -Super8

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