hi im new and wud like as much help as possable

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baby230802
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 12/30/2008 7:23 AM (GMT -6)   
Hi im new 2 UC forum.. i was told in May 08 that i have colitis .... to be truthful i still dnt really understand what sets me off, how long does it take? what should i look out 4.
im 23 yrs old and female. i was on iron tablets to help me as i became aniemic with it. but now off them. i take Asacol. and co-codamol for the pain.
i was told stress causes flare ups, well this yr ive lost my dad in jan, 1 week lata i was in a car accident where i lost my bro. thn lost my nan and grandad in nov 2 weeks apart from each other. im sure tht enough 2 cause stress. but i have tried real hard 2 stay calm, keep wrkin.
i was told some foods set it off? n e thing ? or is it only some things for some people.
i am quite weak some days, mainly after havin a flare up.
i sometimes cnt get to the toilet quick enough - it hurts all of a sudden thn i have 2 go. does tht happen to every1?
 i know i have asked alot but im just very confussed wit it all. and i find it hard tlkin 2 my consolant, dnt help tht i cn only c him every 6 months.
any help will be very helpful and im very thankful
 

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/30/2008 8:33 AM (GMT -6)   
     Hi baby and welcome to the forum.  Yes, your condition sounds very familiar.  We all suffer here with very similar symptoms.   It is hard to decipher what exactly triggers flares.  Everyone has their own theory but we all agree that stress plays a very important part.  I was diagnosed ten years ago with ulcerative proctitis (mainly my UC is in the rectum).  This followed a very stressful year like yours with the loss of both my parents within eleven months.  I am so sorry for all your losses.
      Your pain and then the urgency to go happens to me too while flaring.  That is why I have four portapots around the house because even though we have a ranch type home, I still cannot make it to the bathroom in time.  You didn't mention whether you have any bleeding.  I mostly bleed with my flares, have the urgency and pressure in the rectum.  Prednisone is the only drug (although a very harsh one) which helps me into remission.  If you have still having problems I would insist that the doctor see you before your next scheduled appointment.  My GI doctor sees me every three months but if I need him in between, he or one of his associates take me right in. 
      You will find that the people in this forum and most helpful.  Good luck and God bless.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 12/30/2008 9:39 AM (GMT -6)   
Welcome. I'm new to the forum myself ( just a couple weeks ) But I can tell you that the people here are great. I have recieved a whole lot of good useful information and ideas. And everyone is so caring. You problem with urgency and not making it in time happens to us all it seems. I know it has happened to me. I also am in my intial flare. Been flaring since last nov. But wasn't diagnosed till my colonoscopy in aug. I feel like I'm finally getting better and it has alot to do with the ideas I've recieved here. My doc, sees me every 6 weeks during this flare up, because he's workin to get me out of it. He also has me call in with a report every 7 - 10 days. And He or his Med assistant calls me back with any changes he wants.
Am sorry for your losses and agree that that would be enough stress to set anyone off, even someone with a healthy colon.
Hopefully you will start to feel better soon.
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
 
**********
update: down to 25 mg pred a day as of 12/25/08


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/30/2008 10:27 AM (GMT -6)   
I am sorry for your losses as well...you have had quite a stressful and emotional year. I agree with the above mentioned that stress is a huge trigger for the UC and flare ups...the onset of my UC occurred almost immediately after our wedding, which to me was very stressful. : )

Your symptoms are experienced by each and every one of us is some way or another. We all understand your frustration and confusion. As for the foods...it is a unique situation for each person. However, when in a flare do try to avoid nuts, seeds, grains, and other foods that normally cause a bit of a problem, maybe beans, lettuce, coffee, etc. I have moderate/severe pancolitis, which is UC of the entire colon, and let me tell you that when I'm in a full blown flare the only foods I can tolerate is applesauce and soup.

Prednisone is an evil drug, but the only one that helps the severity of my condition. I also believe you should see your doctor sooner than later, and try different medicine combinations until your flare is under control.

I'm sorry that you're suffering...this really can be a disease that de-humanizes you at times and for me makes me feel far from a woman. I'm glad you have found this site and forum...I too am new to this and already feel more accepting of my situation just knowing others are exactly where I am.

I wish you the best of luck!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 12/30/2008 10:50 AM (GMT -6)   

Welcome to HealingWell, Baby. Because UC's usual course is remissions and flares, it can be really hard to know what sets it off. I'm convinced that a lot of the time, it sets itself off. Or as I say, it comes and goes as it pleases despite what we do.

There is some great information in this thread, and it's a good place to start learning about UC:

http://www.healingwell.com/community/default.aspx?f=38&m=273435


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.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/30/2008 10:53 AM (GMT -6)   
First off, hope you start feeling better soon and you will!

Stress and IBD ='s FLAIR...we have to be so very careful with the way we handle stress, try not to let things get to you so much (I know it hard).

Rememeber this is a brian gut disease, so the mind and or one's state of mind has a big effect on flarring and remission.

Hope this helps!
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!!!


baby230802
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 12/30/2008 1:27 PM (GMT -6)   
thank you for all you great replys, all is helpin and the question about bleedin, yes i do pass quite abit , which my docs knows about... i was given meds that i had to put in to the anus, but i felt very uncomfortable with it. that is when i was put on to asacol.
i really hate it when at work as i work with spiecal needs children and it hard just 2 leave them. and the head teacher dont seem to understand how much pain it causes me, and when i have a day or so off, he moans and says im having to much time off. i dont wanna keep losin blood as i was told by my GP i would need to have a blood transfusion. but touch wood it aint got tht fair yet.

baby230802
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 12/30/2008 2:03 PM (GMT -6)   
oh and also im in the uk so my doc dnt see me when i need to, i can talk to his secutairy but still dont get me an apointment. i do get to see a normal doctor which then recomends nothin cos thr useless. thats why i like to see my consaltant.
im on the pill (birth control) and periods can some times be heavy which i find my flare ups can also be worse.
i go to the toilet several times a day where i will pass stools, but only soft small things, nothin like what its bent to be. and there is always blood and sometimes lumps of blood, is that clotting?
i probably worrie to much , but i dont really have any one that understands me , or that i feel i can talk to. thats why i joined here as i knew i wouldnt sound like a wierdo.
thanks Kay

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/30/2008 2:48 PM (GMT -6)   
      I'm in the US, no problems getting in to see the doctor.  Heard that in the UK and Canada there can be a long wait to see the doctors.  Glad we don't have socialized medicine.  Does the doctor send you in for blood tests?  If you are bleeding, you can become anemic.  There are other people in the forum from the UK.  Perhaps they could be of more help.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


baby230802
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 12/30/2008 3:02 PM (GMT -6)   
yh i have been anemic for the last year, iron tablets have helped, i have a blood test bout every 3 months but i book them normaly, just to see how things are going.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 12/30/2008 3:04 PM (GMT -6)   
Hi..welcome to the forum. My conolences to your personal losses this past year. Deep emotional stressors such as you've had will have an impact on your flares...they would on mine for sure. But, you're not on enough meds, and that in itself is an issue you need to address to help keep flares in check and treat the inflammation you have at this time.

You should get back on the rectal meds..what exactly were you on?

q
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (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 !!!
 


baby230802
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 12/30/2008 3:08 PM (GMT -6)   
i take in total 4 asacol 400mg tablets a day. 2 in mornin and 2 in evenin

baby230802
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 12/30/2008 3:11 PM (GMT -6)   
oh , i take co-codmal 4 pain, and pill(birth control), also have an inhaler for small asthma.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 12/30/2008 3:11 PM (GMT -6)   
What rectal meds were you on in the past...the ones you stopped taking?
4 asacol daily is a low dosage, you might consider to ask the doc to even up it to 6 daily...3 twice daily.

q
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (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 !!!
 


baby230802
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 12/30/2008 3:21 PM (GMT -6)   
i did have suposatories, but i cudnt take them, i got very upset and it was uncomforable, so doc changed me ova to asacol. hasnt changed since then
Was told i had colitis in May 08.
Still have no clue about what sets me off
HATE THIS !!!!


baby230802
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 12/30/2008 3:40 PM (GMT -6)   
enemas
Was told i had colitis in May 08.
Still have no clue about what sets me off
HATE THIS !!!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 12/30/2008 3:40 PM (GMT -6)   
What I can suggest is that you try to use rectal meds of some kind. I know they will be uncomfortable to put in, run under hot water helps a bit to slide in better or using a lubricant.

It will help your rectal discomfort.

q
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (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 !!!
 


baby230802
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 12/30/2008 3:48 PM (GMT -6)   
I used lubricant , really cudnt do it. im very funny bout the area. i know everyone prob feels the same but i cnt have my self or my partner touching it let alone sticking anything up there.
Was told i had colitis in May 08.
Still have no clue about what sets me off
HATE THIS !!!!


Ontario_Girl
Regular Member


Date Joined Dec 2008
Total Posts : 28
   Posted 12/31/2008 1:47 AM (GMT -6)   
Hey Kay, just read your messages.....I live in Canada now (moved here 5 months ago!), but am originally from London, England....

I was diagnosed in England. If you want to chat with a fellow Brit anytime, just give me a bell! Hope you start to feel better soon...you've had a crap time (no pun intended!), but things will get better x
Female
Diagnosed with UC in 2003 (aged 24)
Asacol 6-8 oral tabs daily
Pentasa Suppositories
Flora-Smart Extra Strength Probiotics
Green Tea
Attempting low gluten....but struggling! Also love too much sugar..


holliesboy
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/31/2008 5:08 AM (GMT -6)   
Hi Baby, and everyone, firstly Im so sorry to hear what you've been through in the last year,as everyone's said, its no wonder you've been stressed, I myself have only just been diognosed with Protitis in November and I also live in the UK,,In Kent,, and have only joined this forum this week, and I must say that Ive learned more about this condition in the last 2 days then everything the docs have told me in 4 months,,it really been helpfull, which Im sure you will to,, hope your feeling better soon

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/31/2008 8:40 AM (GMT -6)   
     Are canasa suppositories available to you over there?  Perhaps they would help if you cannot tolerate the enemas.  I know, the enemas are NOT pleasant, but the do wonders for me.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


tummy2
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/31/2008 10:49 PM (GMT -6)   
Baby, I'm also new to the forum, but I was diagnosed about 2 years ago. I was very uncomfortable using the suppositories also. I was on the canasa, which is okay- but I didn't enjoy it... Now I'm taking Lialda, which I take before bed... Since taking it every night, my symptoms -like yours, baby- bleeding, clotting, frequent- but incomplete- bowel movements are not present daily. I'm not sure if you have Lialda in the UK but it's worth a look...

baby230802
Regular Member


Date Joined Dec 2008
Total Posts : 25
   Posted 1/1/2009 9:43 AM (GMT -6)   
thanks 4 all everyones oppions, im hopin to c my doc soon to tlk 2 her , see what she says.
Was told i had colitis in May 08.
Still have no clue about what sets me off
HATE THIS !!!!
 
took enemas  - NEVER again
 
Now takin 2 Asacol in mornin, 2 at night. (400mg )
Also take Co-codamol 500Mg for pain
 

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