I'M NEW @ THIS SO SUM1 READ THIS & TRY 2 HELP?? COMMENTS PLZ?

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yadi
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/29/2008 11:47 PM (GMT -6)   
Hi,
     well I'm new at having UC. I was diagnoised with ith back in March. I'm 19 years old & let me tell you sumthing it has not beein easy for me at all! I get fraustated & I break down & cry once in awhile becuz it's really hard for me! It all started last year back in Sept. they didnt know what I had I kept goin back & forth to the doctors till I got really sick in March (durin the time from Nov.-Feb I was stayin in California with my sis I was taking all these natural pills they weren't no pills from no doctors or anything it took time to get better while i was takin them then i came back to Oregon since i was better)but in March I ended up in da hospital where i lasted a whole week! That's where I learned I had UC! It was really hard to find out & I didnt want to admit I had that! So yeah that's my story right there...idk what you ppl do to cope w/stress & flares when you get them like I mention b4 I'm new @ this so any advice & suggestions? plz!!

AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/30/2008 12:00 AM (GMT -6)   
Hi Yadi
 
I know, it sucks but at least you've been diagnosed. I had to wait 20 years before keeling over in 2005 and having to have a blood transfusion before got a correct diagnosis.  I think the stress I experienced prior to the bleeding is what tipped me over.
 
What meds are you on? It has taken a few years and changes in dosages as I would be ok for a while and then have a flare up as the med wasn't working anymore. SInce being in hospital in Feb where I had a super major bleed and came close to leaving this earth, I've been put on some more serious meds. I would much prefer taking the meds and having the inconveniences of blood tests and colonoscopies, sigmoidoscopies than the other option.
 
Stress does play a part in making you go to the toilet more often. You need to work out what is classed as normal for you. For me, it's twice a day, and more if eat the wrong thing or stressed.
 
I'm also allergic to sulphur and so can't eat nuts of any kind, their oils, sesame seeds and oil, bananas, as well as certain drugs. I also can't eat wheat. Certain foods can cause problems but you will have to trial and error with them. Unfortunately UC affects everyone differently and some drugs work better with others.
 
Take care
Bron
Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005, 4 DVTs and 1 PE Nov 2007
Misdiagnosed for over 20 years re the above!
 
Oesteopenia in right hip and spine (caused by pred)
 
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil 
 


yadi
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/30/2008 12:36 AM (GMT -6)   

BRON,

THANX FOR REPLYIN BAK! O WOW 20YRS? THATS A LOT! I'VE BEEN TAKIN SULFASALAZINE & NOW IM TAKIN PRED. SINCE IM NOW HAVIN A FLARE UP. WHICH ONES DO U TAKE? I SURE  DONT REALLY KNOW WAT KINDS OF DIFFERENT MEDS THERE'S OUT THERE FOR PPL W/UC. TWICE A DAY NOW THAT'S A LIL BIT 2 COMPARE TO ME...I GO 2 DA RESTROOM VERY OFTEN ESPECIALLY IN DA MORNINGS & NITES! UGH NOW THAT'S REALLY STRESSFUL! ESPECIALLY WHEN IM TRYIN 2 GO 2 SLEEP @ NITE..ALL OF A SUDDEN BAM! THERE IT GOES DA PAIN & DA URGE 2 GO 2 DA RESTROOM. I HATE HAVING THAT FEELING...SUMTIMES I CANT EVEN GO OUT & HANG OUT W/MY FRIENDS & IT'S REALLY HARD CUZ IM 19 & WELL U KNOW EVERY TEENAGER WANTS 2 GO OUT & HAVE FUN...HOW BAD HAS THIS AFFECT YOUR LIFE? & IN WAT WAYS?

                                                                   YADI


healinggirl
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 8/30/2008 12:51 AM (GMT -6)   
Hi Yadi :)
 
I'm 44 and the mother of 5 beautiful children, 25, 23, 21, 12 and 2.  I'm so sorry to hear that you are so young and have this...I'm with you - I would be so lucky to go only 2 times a day!! Imagine that!  I go on the average at least like 15-20 times I would guess...it's nuts.  I go at night too, like you.  I haven't tried the Asacol they prescribed me ever - they prescribed it back when I was first diagnosed in February 2002.  I am just afraid of side effects etc...I am not sure if the risks outweight the benefits, ya know?  I've only ever taken aspirin, tylenol, ibuprophen, and the occasional antibiotic.  That's it.  So I am kind of worried about taking something that rhymes with alcohol - it just sounds scary!  But I would get over it if the doctors could show me solid proof that it works, reduces the chance of getting colon cancer, and that the side effects probably wouldn't even affect me.  I have a little baby girl who is 2, and I know I have to stay strong for her - and for my older kidlets too.  So I am going to get insurance (hopefully free Medi-Cal here in California), then get a virtual colonscopy, a real colonoscopy, an upper gi, a sigmoidoscopy, a barium enema....whatever they recommend...I've only ever had a barium enema and an upper gi and a flexible sigmoidoscopy - that's what my original 2002 diagnosis of Chronic Ulcerative Pan Colitis was based upon.  I have a male friend named Jack who is like 22 and lives in Ohio and has had U.C. since he was only 7!  My heart goes out to him...he tells me he is taking some herbs and feels much better.  He sent me a list and I am going to try them too.  I will post the list here for what it's worth.  Anyhoooooooo hope you are doing well, keep in touch.
Taylor

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 8/30/2008 12:54 AM (GMT -6)   
yadi welcome to the forum... i'm sorry you're here, but glad you found us. Please try not to use all caps... it comes off as yelling and it's hard to read.
Kara, 21F Married.
Diagnosed March, 2007, but was going through testing for a year before diagnosis.
Left Sided UC. Currently in a flare.
Medications:
Lialda - 4 pills in the morning w/ food.
Steroid Enemas


ANTIGUA9
New Member


Date Joined Aug 2008
Total Posts : 16
   Posted 8/30/2008 12:57 AM (GMT -6)   
Yadi - the biggest thing you can do for yourself is accept the situation. It can't be changed and you can get depressed thinking too much about it. Also realize that there are psychological as well as physical side effects from the medication. You may feel anxious or overwhelmed and just not yourself while on steroids. It also helps if you know you want to go out later in the day or the next day, just to go easy with what you eat. Not too much of anything. Maybe no dairy, fruits or vegetables, beans as they can make things worse. Also, as small a meal as you can get away with. I usually do what I can when I'm feeling well. Sometimes thats several hours in the morning, sometimes only a few at night. Just accept your body's limitation at this time and let it get better. Don't try to do everything you used to do - it will only frustrate you. Hope this helps a little.

AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/30/2008 1:36 AM (GMT -6)   
Hi Yadi
Everyone is different. I have allergies and so can't take sulphur which is what sulfasalazine is. I originally was put on mesalasine and pred. I've taken pred on and off in the past when misdiagnosed with psoratic arthritis and it works the opposite on me. Instead of feeling hungry and getting a moon face, I go the opposite and lose weight as it suppresses my appetite. With pred you just can't stop it, you have to wean off. Also, pred leaches calcium from your bones so take Vit D and calcium supplements as no-one bothered to test me until Oct 07 and I was found to have the stage before oesteoarthritis!

I believe that taking large doses of pred (allergic to all the non steriodal meds) is probably what kept me 'in check' and kept me misdiagnosed as no-one considered doing a colonoscopy until after I had the first blood transfusion. THe 6 months prior to that was an extremely stressful time. I had moved cities and started a PhD and was tutoring for a meglomaniac lecturer, plus I had broken my foot (imagine trying to hide/run from a crazy person when you're on crutches !).

It is a shock to be diagnosed. I had a very blunt GI originally who broke the news to me as "like a heart, liver, lung transplant patient, your body is acting as if you've had a bowel transplant and so it's attacking you and trying to get rid of it'...... I can tell you I broke down after I left his office and cried.

THe next morning I went for a walk and in between smiling and saying good morning to people, I was trying not to cry. As I was walking home, a bird crapped on me. That nearly sent me over 'even the birds are crapting on me' was my thought. Then I got angry and told my body that it was a team and just because one member wasn't strong didn't mean that they could kick it off, they had to work together. It was then that I decided that no matter what, there will always be someone worse off then you. I still have my arms, legs, I can see with my dodgy eyesight, hear, speak and think. I've seen people on chemo and radiation and my heart goes out to them.

Knowledge is power. Listen to your body. If you have to write down a food diary or what occurred during the day, and how many times you went, do. Then you'll probably start to see a pattern re certain foods and situations. Over the years before the diagnosis, I knew I couldn't eat certain foods but tried to say to myself it was in my head but paid for it each time.

It's hard being 19 and wanting to party but you have to put yourself first and stuff peer pressure. Drinking too much alcohol can screw your bowels up. Hard I know when you're out partying with your friends. I can't drink beer, scotch, whiskey, certain wines, vodka. If you want to drink, find something that suits your body and stick to it.

I feel for you Taylor. WHen flaring, my record has been 16 times in one day and I found that was exhausting enough. I eat natural yoghurt, and oats every morning to coat my stomach and then stick to things like corn thins for lunch. Fruit is a no no during the day, I only eat it in the morning as I know I'll be going to the toilet before starting my day. Sad when you plan your morning routine and take into account the number of times you need to go before starting the day.

I also have to put up with a fistula which drains during the day and that can be socially embarrassing. It has also stopped me from starting relationships as people understand you need to go to the toilet but a fistula..... Don't know of many males that would be strong enough to cope with that. But still, am searching to get it repaired. Had surgery 3 weeks ago but it failed. At least my Gynie Dr is willing to continue to search for new ways to repair it without the bag option that the GIs are set on.

It's hard Yadi, but over time, you'll know your body and what foods/drugs suits you. I've had to change meds over the years and at the moment, the concoction I'm on is presently working.
Take care
Bron
Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005
Misdiagnosed for over 20 years re the above!
 
4 DVTs and 1 PE (blood clots) Nov 2007 (caused by flare ups) 
Oesteopenia in right hip and spine (caused by pred)
 
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil 
 


nellewbl
New Member


Date Joined Aug 2008
Total Posts : 10
   Posted 8/30/2008 8:46 AM (GMT -6)   
Hey Yadi, I am 29 and sure do remember being an active 19 year old with the disease.  At that time (and today), I was taking asacol - 400 mgs 6-9 pills a day and that was it.  I started with the sulfasalazine and predinsone, found I was allergic to Sulfa drugs and got on the Asacol with Rowasa enemas for a while.  For me, there was an improvment on all drugs prescribed.  But, it does take time.  I can't remember what it felt like before being diagnosed, but I can tell you that I rarely get up in the middle of the night anymore (mostly if I am having a flare up).  If I watch my diet (just knowing that if I eat a certain food, I am prepared to pay the consequences shocked , take my meds as prescribed (for me that is crucial - I am guarenteed a flare if I don't), excercise, and in general take good care of myself and try to live my life, I FEEL better. 
 
I hope you see a turn around quickly and you will be in my thoughts wishing you well.
 
Nelle 
  • Diagnosed in 1994 at the age of 14
  • Initally prescribed prednisone and Rowasa enemas - near immediate improvement (Yay!)
  • Within 1 - 2 months later, prescribed only Sulfasalazine - Yikes! Severy allergic reaction!  1 week in hosptial with 4 blood transfusions.  Then prescribed Asacol - Phew!
  • Mid 2008, tried Lialda - NO!!!  Caused flare, pills to big to swallow! 
  • Back to Asacol - 400 mg tablets, 3 pills, 3 times per day, and a daily multivitamin
 


yadi
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/30/2008 6:31 PM (GMT -6)   
O wow thanx for those who reply bak. I was able 2 c that i still a lot of things 2 learn about. Most of da stuff u guys mention about da meds or other things i dont really get? I try hard enough 2 be able 2 handle my pains i get now & then. Is there any special pain pills for that? Recently when i went 2 da ER they gave me hydro for my pain but my GI docotor wasnt so happy with that becuz he said that they're just like band aids & i can also get addictated to them since i had asked for refils becuz i couldnt take da pains anymore so he deny in givin me them since in da first place he wasnt da one who gave dem to me. I feel like im gettin a lil better becuz today I was able 2 do chores & have da energy to do it. Once again thanx for those who reply bak & wow I look up to those who r able to handle this & who have had it longer than me! Thank You

AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/30/2008 9:40 PM (GMT -6)   
Hi again Yadi

Being a female you learn to cope with period pains. I try to think of bowel pain as that too and just sit still and breath through it (if it's just pain and not a toilet run). Unfortunately the super pain killers can be addictive. Endo is a synthetic morphine and taken orally. Good for short term only. I just stick to panadol or panadeine but you have to be careful. I once took a 24 pack of aspirin in 24 hours and ended up bleeding as it screws your stomach lining.

Perhaps you need to go on a clear fluid diet for 48 hours to try and rest your bowels. Then very slowly try different foods and watch the reaction. I haven't eaten a banana in 20 years and tried one about 4 weeks ago. My bowels ended up feeling extremely hot and painful, lots of gas, and one toilet trip, and basically was telling me that if I ate any more it would slam me.

Try also vitamins. Zinc is good in helping the gut. I hate juice as it's too sweet tasting for me but have been told that pineapple juice is also good for the bowels. Eat less red meat as that can irritate the bowels.
Hope you have success in finding out what is and isn't good for you.
Cheers
Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005
Misdiagnosed for over 20 years re the above!
 
4 DVTs and 1 PE (blood clots) Nov 2007 (caused by flare ups) 
Oesteopenia in right hip and spine (caused by pred)
 
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil 
 


yadi
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/30/2008 10:28 PM (GMT -6)   
Hey there again Bron,
That is true about dem period cramps. & also thanx for da advice in wat kinds of foods or liquids i should take & avoid. I've been lookin more into UC & i've noticed ppl have surgey. Have u ever thought of that? Becuz I was thinkin it would be GREAT not havin UC anymore & well that got me into more thinking of having surgey? Should I talk 2 my GI about this? Becuz today I had a breakdown meaning i broke down & cried so much becuz of wat i had found out more about ppl havin UC. & certainly I wouldnt want to be livin w/UC?

AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/30/2008 11:02 PM (GMT -6)   
You would have to talk to your GI about surgery and what happens afterwards. For some people it's the answer, for others, not. Check out the Ostomies forum, a lot of people there have had or are contemplating surgery for their UC/Crohns and some have permanent or temporary bags. I read one thread where a mum wrote about her teenage daughter who is currently recovering from surgery.

Surgery is a personal decision and you and you alone are the only one who can make that call. To me, having UC means I'm just 'more regular' than others. My meds are working and I prefer to take pills than surgery. Your mindset about living with it is the most important weapon you have. If you keep focusing on the negative, then you'll always be depressed by allowing the UC to rule your life. Talk to your Dr about depression as this is classed as a chronic disease. My GP is always surprised about how positive I am. I acknowledge I have it but I think of the UC in terms of having a medical condition. Plus I always believe that no matter want I am going through, there are others with much more serious conditions.

I have a couple of sayings around my place for when I'm feeling down and upset -

"The aim of life is to live, and to live means to be aware, joyously, drunkenly, serenely, divinely aware" Henry Miller.

"Live Well...Laugh Often....Love Much"

Take care
Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005
Misdiagnosed for over 20 years re the above!
 
4 DVTs and 1 PE (blood clots) Nov 2007 (caused by flare ups) 
Oesteopenia in right hip and spine (caused by pred)
 
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil 
 


yadi
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/31/2008 12:37 AM (GMT -6)   
O wow I have not met such a positive person especially havin this disease. To tell u da truth I'm always thinkin about this & thinkin negative about things but gladly I have such a GREAT family & friends who r supportive. Hmmm...this has me thinkin now? Maybe I should talk about this & look more into it? Has this affect in any way of u gettin a job? I mean at da begining stages of when u first got UC? & about diet? How's that for you? THank You for those encouragin words =]

AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 9/2/2008 8:54 PM (GMT -6)   
Hi Yadi
Been offline as had had surgery for my RV Fistula using a new technique in early August (not for the UC) but it unfortunately failed and so ended up with a post op infection and now on antibiotics.

Re the UC, yes, google as much info as want, ask your GI or GP to give you info to read and talk to them about your fears/concerns. Listen to your body, take note of what you eat and how it reacts. I'm allergic to certain drugs and foods but it took a couple of years to work it out.

Job wise I have been lucky and not have missed out on a job or lost one due to it. In fact, I don't tell interviewers - it's none of their business (don't know what the other forum members think but that's how I feel as some people are diabetics, etc, and I just happen to have this).

If my UC is playing up, while I'm working, I don't say anything as I regularly get up anyway from the desk to stretch and walk around. If I'm working with people I know, I just tell them my stomach is playing up and they accept it. The last 10 months has been interesting as have been hospitalised twice. Due to me doing postgraduate stuff, I've been doing temp contract work for the last few years. One of my contract jobs was initially 4 weeks but lasted 9 months and the hospitalisations occurred during that time period. I contacted one person in the office who let the others know. They could have easily terminated my contract but they were more concerned about my health and kept my job open until I returned to work. Apparently because I got on with the staff and management, my positive work ethic and doing things without complaining and doing it quickly, kept me the job.

I have noticed this in a number of contract positions when I have told them I can't come in on certain days or I had prebooked holidays. If you're positive in your outlook, towards people, life and work (no matter how boring it is), then people respond to that. As my mother says 'honey works better than vinegar'. It's not what you say but how you say it. Besides that, I still keep in contact with a number of people from previous jobs - you never know when you might be back there!!
Cheers
Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005
Misdiagnosed for over 20 years re the above!
 
4 DVTs and 1 PE (blood clots) Nov 2007 (caused by flare ups) 
Oesteopenia in right hip and spine (caused by pred)
 
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil 
 


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 9/2/2008 9:27 PM (GMT -6)   
My daughter was 5 when she was diagnosed with UC. It takes time to accept and get into remission. Once you are, don't go off the meds you will flare worse. Check out www.justadrop.com it works great when your not home.
Joan
 
Daughter 5, UC
Pentasa 2X2 daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
 


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 9/3/2008 1:58 AM (GMT -6)   
Hi and welcome to HW, you've found a great site here.There are so many here who have went through what you are going through.I was properly diagnosed at 15 and i am now 32 so i know it can be hard.
There are so many stresses to deal with when living with a chronic illness like UC but we have to stay positive and learn ways to deal with it. I'm Glad you found us here.Feel free to ask us anything thats bothering you because we have all gone through the problems and emotions that you are experiencing.
keep the faith
Marty
                                     keep the faith 

         asacol/proctifoam/
Zoton (lansoprazole)/pred/colofac


       
                   http://www.myspace.com/martylogue


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 9/3/2008 6:51 AM (GMT -6)   
Hi Yadi, welcome to Healingwell :) I was only slightly older then you when I was diagnosed (22 years old) and I know what it is that you are going thru with wanting to be normal so you can hang with your friends or even pretend that you don't have this. I was in denial for a very long time and just didn't take care of myself properly. At the time, computers weren't a household item so I didn't have anyone to talk to that had this disease. It wasn't until 4 years ago when I found HW that I was actually able to talk to others with UC. It felt like I was the only one who had this for so long! Hw is a great supportive website with a wide array of people of different experiences. I just want you to know that what you read on here is not always the norm for Uc. Sometimes there are others out there with Uc who only flare occasionally and live happy and productive lives. What you read on here are the ones who are having a hard time with their Uc. A good website to visit is www.ccfa.org
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 

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