advice on many different topics please!!

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pixydust13
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 9/13/2008 1:40 AM (GMT -6)   
every time i get a new job it gets messed up because of me having UC. i call out sick too many times everyone says, so in the end i lose the job. its like they don't believe me and the last employer i told about my symptoms treated me different ever since that day. it feels like there is no hope anymore...even though ive had this for 4 years i feel so lost is there anything that the government can do? what about disability? if they had this disease they would know why my employment history is so horrible...even though i was diagnosed when i was 16 and now im 20 im finding things i've never heard about on this website like not eating fatty things or sugary things or UC being related to depression i fit all these things and no told me anything no one told me about websites like this no one told me that alot of people suffer from this affliction and that no one knows jack about it no one helped me with helpful hints to keeping urself in remission or trying to switch your diet, actually my previous doctor told me NOT to switch anything in my diet that that step was only associated with Crohns. i have felt horrible ever since i was diagnosed i don't even think ive been in remission yet its just pain and crying and more pain and all ive figured out is people either don't know anything about UC or they don't care because they don't think its serious, they think im faking half the time. please wheres the best place to get info and when will i feel better????????

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 9/13/2008 9:40 AM (GMT -6)   
Hi Pixie,
     First of all....you sound totally stressed!  I can relate to your agony.  I've had UC for ten years but I was 52 when diagnosed and not working.  I think it does suck that people with UC and Crohn's cannot collect disability.  I know at least three people on disability for so called "depression" and they run around having the time of their lives...so unfair.
     I learned from this site that everyone is different in what they can tolerate as far as diet is concerned.  Crapcakes are a no-no for me.   As a matter of fact, that is what triggered my last flare.  Either that or my taking a bubble bath with dollar store bath beads.  My GI doctor said the bubble bath could have contained something in which set my immune system in a tailspin..we'll never know.  However, crabcakes have triggered a flare in the past....guess I didn't learn my lesson...now I sure have.
     Are you on any medications?  Have you had a colonoscopy?  See if your family physician could give you something to alleviate your stress, like Xanax.  Stress certainly is not helping your situation.
     Let me know how you are doing ok? 

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/13/2008 10:31 AM (GMT -6)   
Pixie -

This is one frustrating disease isn't it! You sound so isolated and scared. I'm really sorry to hear about all the problems you've been having, both physically and with employment issues. After my diagnosis, I spent a long time hoping, praying, and wishing that someone would give me a diet to follow that would help to eliminate my symptoms. I heard again and again from many different sources...doctors, people here on the forum, nutritionists...that keeping a food diary is one of the most useful tools for us. Of course I ignored that advice because a food diary is too much trouble to maintain, and if someone couldn't spell out a diet for me, well then I'd keep eating whatever I wanted. Besides, keeping this diary would mean that I was finally giving in to this disease. I was in pretty heavy denial for a while.

I eventually changed this thinking and gave the old diary a try. Just as a trial period I was telling myself. I discovered this was probably the most useful tool we have for helping ourselves! There was a reason some many people recommended it to me. Keeping track of what does and doesn't agree with you, and having it on paper, helps not only you, but your doctor as well. This disease is so personalized that what helps one or two or ten people might not help you. But keeping the food diary, and tracking how different things affect you will let you know what helps YOU. It helps your doc, because he/she might be able to find a pattern in certain foods, and you might discover a food allergy or intolerance.

Read through the posts here and you will discover many people advising someone keep a diary/journal. You will also discover that many people have miracle cures for themselves, but that doesn't mean their diet will work for you. Never hurts to try them out though.

Due to your age, I'm guessing you've been getting jobs that are just that...jobs. I'm not sure what your interests and training are, but I've found that when you have a particular skill and are looking into career type jobs, employers are more forgiving and understanding. It also helps to be healthy when hired, which gives the employer time to get to know you and appreciate what a good employee you are. Then when you have a flare, they like you enough to work with you to maintain your employment.

I hope this helps you. This disease is one pain in the ***. Most people do not understand UC or Crohn's, and that includes doctors. The folks here are always willing to help out, give support, or empathize with you. I've gained more knowledge and helpful tips from this forum than I ever got from any doctor. I know it doesn't seem like it, but remission is possible to achieve.

Good luck and let us know if you have any other questions.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Prednisone 30mg


pixydust13
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 9/13/2008 11:39 AM (GMT -6)   
thank you for the advice i was so frustrated when i wrote that, i had just woken up in the middle of the night to weezing, i have asthma too. another topic though what about the Activea yogurt? would that help or just make things worse? i will start a diary though thats a good idea, i think by just not accepting this disease im stressing myself out more, im not sure how everything works on here i was gonna add my prescriptions to my profile but i don't know where to write lol i guess ill figure it out but im on 2.4 Lialda and i take Protonics once in the morning too i think thats for heartburn though. i used to take Azathioprine and Dipentum and occassionally Prednisone but when i switched doctors they switched my meds. i had a problem taking all of those too, as soon as i would feel somewhat better i would stop taking them and i absolutely hated taking prednisone for long periods cuz it made my face all fat. ive had two colonoscopies and they messed up my IV on the first one like 3 times!!! then i woke up in the middle of it anyway!! so going to the hospital has always stressed me out alot. but now i have a new stress, my stepfather quit his job and my health insurance went bye bye!!! so between the time i lost it and when i get it again, i can't go to the doctor for anything. but they were nice and they're letting me get samples of my meds so i don't end up hospitalized. after i went back to sleep this morning and woke up again i felt better though, i actually felt like i wanted to go do stuff outside. but thats another bad habit of mine once i feel even the slightest bit better i go and overexert myself...i feel almost embarrassed asking my doctor for something to help with stress, i always feel that im blowing up the situation, thinking things are far worse then they actually are and that i don't need these medications. they wanted to put me on zoloft for depression and i got so scared to take it that i ignored my doctors advice. it said that it would make me nauseous and i got scared that it would interact with my UC.
Life is too short to wake up in the morning with regrets. So love the people who treat you right, and forget about the ones who don't and believe that everything happens for a reason. If you get a chance take it, if it changes your life let it. Nobody said it was going to be easy they just promised it would be worth it.


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/13/2008 1:05 PM (GMT -6)   
Pixy -

Losing your health insurance is a tough one to deal with, but it sounds like you have a very good doctor to consult with. There are many ways to deal with stress besides taking new meds, like meditating, exercising, even going outside (don't over-exert yourself, just go out for a little while a couple of times a day). As I said, I was in denial for a long time, and caused myself quite a bit of grief because of it. Taking small steps in your recovery is a major accomplishment. Staying on your meds once they start to work is important as well. If you are feeling better, that means they are working, but if you stop, they can't do anything to help anymore. They aren't like antibiotics, where you take them for a set amount of time, then BAM! everything is all better. It is possible to go med free when you've been in remission for a while, but a month or two isn't long enough to judge your overall health. And one last thing, when a drug fact sheet lists side-effects, that doesn't mean you'll get all those effects, thank god! They are just listing things that some people reported as feeling after using the medication. The list will usually contain a small statement about the number of incidences of each side-effect, and whether it was a "common" side-effect, or if it was an "uncommon" but reported possible side-effect. I've been taking anti-depressants with UC for a while, with no noticeable adverse reaction. i hope things begin to look better for you soon. Keep us updated on your progress.

PS Good job on deciding to keep the food diary. You will be amazed how much you can learn from reviewing that after a couple of weeks!
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Prednisone 30mg


bulldozer
Regular Member


Date Joined Jul 2008
Total Posts : 37
   Posted 9/13/2008 1:42 PM (GMT -6)   
Dear Pixy,
I too felt for you as I was diagnosed 30 years ago and then felt very isolated as no one else seemed to have UC and people were reluctant to discuss it. This forum has made me see that we have come in leaps and bounds to a clearer understanding ( not necessarily of the disease, as it is a very individual complaint, and we are not the same, I'm afraid ) of the difficulties that UC sufferers face emotionally, physically, in relationships, socializing -- the list goes on. Do trawl the forum for lots of info.- reply to people as it helps to get things off your chest. Do keep the food diary - I tabulated mine to include drugs taken, foods eaten, times and how the symptoms were that day -- remember that it takes 16/20 hours for a foodstuff to pass into the gut -- so refer to the foods taken at that time previously -- does that make sense ? Find an outlet for yourself -- even punching a cushion ( that's free !! ), laugh lots, try not to dwell on the disease, as it becomes a vicious circle with the stress factor.
Please feel free to reply to me if you need to talk. Take care
turn smilewinkgrin

lightlove
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/13/2008 2:17 PM (GMT -6)   
Pixy,
Well you expressed in your mid night letter how many have felt many times with UC. I was diagnosed at 17 y.o. with UC and I remember feeling so ashamed. The Dr. told me that it was toxic and that if I didn't have my colon removed immediately and have it replaced with a plastic bag I would die. Well guess what at 17 I said no. I walked out of his office and went to a Natural Path. I didn't have money so I made cookies for the NP and he helped me in amazing ways.
The western modern Dr. will not tell you that diet has anything to do with UC or anything else. They see it as a biological disease with no cure and do not know why it exists.

Yet people who are having good success are watching what goes in the mouth. Many people have cut out all gluten products and are careful about what carbs they eat.
For myself having had colitis for 30 years and really not much problem with it, I followed the NP's suggestions. (I just blew it the last 2 years by eating a lot of sweets and carbs while I was under a lot of stress after coming back from Iraq).
Check out www.breakingtheviciouscyle.info

Not having health insurance may actually work out for the best for you as hopefully it will lead you to alternative Drs. There is lots of research going on right now that I hope will actually bring a cure rather than a bandage to the UC problem.
You've got to check out thes links. They will make you laugh and at the same time the theory is hopeful. It's some of the latest on UC. It's basically drinking the fecal matter of a healthy person. I'm following this latest theory and I laugh everytime I read it. In some ways I think wow a solution so simple, yet ugh drinking someone's else's crap.. I hope it works as it would be such a simple solution but time will tell. Never give up HOPE. my email is sbjorkgren at yahoo

http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

http://curezone.com/forums/am.asp?i=57263&s=3

pixydust13
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 9/15/2008 8:19 AM (GMT -6)   
i really wish some one told me that forums like this existed back when i was 16 they help you so much! and it amazes me that someone with this disease went through basic training and then went to Iraq!!! that gave me so much encouragement cuz if thats possible then i can do it too!! well idk about iraq but saying that i can accomplish something like that makes me happy, it makes me want to exercise and be motivated instead of hiding in my apartment all day. thank you guys
Kymie
Diagnosed June 2004
2.4 Lialda, 40mg Protonics, Flinstones vitamins(yummy),
Rhinocort nasal spray, albuterol, and Advair

Life is too short to wake up in the morning with regrets. So love the people who treat you right, and forget about the ones who don't and believe that everything happens for a reason. If you get a chance take it, if it changes your life let it. Nobody said it was going to be easy they just promised it would be worth it.


bulldozer
Regular Member


Date Joined Jul 2008
Total Posts : 37
   Posted 9/15/2008 1:50 PM (GMT -6)   
Dear Pixy,
I noticed that you take a nasal spray -- now when I don't have colitis I suffer from non-allergic rhinitis --. You will find out via the forum that there seems to be some correlation between the two diseases? Many UC sufferers have rhinitis too. This is what made me first interested in the site, as I wondered about this for some time. After all both seem to be some breakdown in the immune system.
As for achieving whilst ill. -- I was a teacher of Home Economics and Textiles when first diagnosed. I became Head of Textiles and took part in the pilot scheme for the new curriculum ( UK ). Also I took a correspondence course to teach English as a foreign language ( I never used this qualification ) For a pastime I again took up figure skating and with a partner used to compete in the local league and in Skate Electric ( UK ) However the stress of the job eventually led me to give up teaching in 1993 ( I then went into remission in 1994 ) Meanwhile we started a holiday business in Scotland and started a skating club -- doing the shows at Christmas etc. Finally at the age of 53 I qualified as a skating coach after 2 years of training on ice and studying all sorts of sports based subjects, writing 2 dissertations etc. Now at 58 I have recently given up both occupations and retired. Now doing lots of dancing in the ballroom !!! Hence the reason I was so upset to have a remission -- as it does affect the quality of life -- therefore I was really determined to get better. Have had little/no symptoms for a few days again. Concentrate on the good things in life. Find JOY.
Take care Pixy , be determined. smilewinkgrin
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