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Posted 3/19/2009 9:03 PM (GMT 0)
Hi everyone, I have been reading posts on this forum for a little while since I doubted I was going to be diagnosed with UC or crohn's very soon. I got the diagnosis this morning, after a colonoscopy.

I am 25, (from Québec, Canada) and my diagnosis is pancolitis (the whole colon). THe specialist told me that my colon was in a very very bad shape and that it would take some time to heal. I started prednisone and mezavant today, hope I will feel a little better soon...

I am very anxious about what's coming up for me next... I'd like to know how you guys reacted, and how you managed to find all the info and support to get better. I don't know what to expect for the next few weeks

Any input on diet/medication/etc will be appreciated.

By the way my main language is french so it explains my poor english ;) I do my best!

 

Post Edited (PinkPaperclip) : 3/19/2009 4:37:56 PM (GMT-6)

Posted 3/19/2009 10:26 PM (GMT 0)
Your english is fine! Welcome to Healingwell :) I'm sorry that you got the diagnosis but I'm glad you found us. If you should have any questions, regardless of how gross you may think they are, do not hesitate to post.
Posted 3/19/2009 10:31 PM (GMT 0)
Welcome PinkPaperclip. I know how hard this hole things is and so does everyone thats on here. Even if you never wright anything its still nice to be able to read about whatever other people are going through. And you never have to worry about what you ask because most of us have already been there and done that. Or they are going through it right now. Im 24 and I have had UC for about 2 years now. So if your ever feeling bad then come here. And dont let your dad make you feel bad. I have a dog and a cat and there is nothing in this world that would let me let them go. Plus he will never really know how hard UC is and what you go through day by day.
Posted 3/19/2009 10:38 PM (GMT 0)
Bienvenu(e) !!!!!!! You will find a number of your fellow/sister Canadians posting here, including Quincy, pb4, & Paul L. I hope your medicine starts to work quickly so that you feel better soon. Moving house is never much fun, even with good health. Soignez-vous! / Old Hat (30 yrs with left-sided UC ... [etc.])
Posted 3/19/2009 10:50 PM (GMT 0)
HI, sorry we are having to meet on a forum about UC and not something more pleasant.  I have had UC for 40 years.  Mine is not my entire colon, just part of sigmoid and rectum, but probably have a lot of same symptoms of the diahrea, bleeding, pain all those things.  I have had long periods of getting by rather well.  Have recently done prednisone and now trying for the first time in 40 years a immunosuppresent drugs and believe me the people and posts I have on here will tell you how anxious I too am.  Just yesterday, I spoke with someone that I just met and went and saw her.  SHe has what you do, she did the whole gammut of medications but finally had the J pouch surgery.  She was so glad not regretted it a bit.  I asked her how she made the decision to do that, she said you just know in your gut when it's the thing you finally know that is what you want to do...you really do know.  She was seen at the Mayo Clinic saying there is one in Arizona now and she was thrilled with her doctor.  I hope whatever road you go down you will start to feel better soon and hopefully answers will come your way...Molly

PinkPaperclip said...
Hi everyone, I have been reading posts on this forum for a little while since I doubted I was going to be diagnosed with UC or crohn's very soon. I got the diagnosis this morning, after a colonoscopy.

I am 25, (from Québec, Canada) and my diagnosis is pancolitis (the whole colon). THe specialist told me that my colon was in a very very bad shape and that it would take some time to heal. I started prednisone and mezavant today, hope I will feel a little better soon...

I am very anxious about what's coming up for me next... I'd like to know how you guys reacted, and how you managed to find all the info and support to get better. I don't know what to expect for the next few weeks

Any input on diet/medication/etc will be appreciated.

By the way my main language is french so it explains my poor english ;) I do my best!

Posted 3/19/2009 11:03 PM (GMT 0)
Thank you so much for your replies, I edited my post cause I was worried about sounding like a crazy catlady lol !

I was crying like a madwoman but now your posts are making me feel much better. Its so good to know I am not alone. 

about my symptoms, it's funny cause I think I have been carrying this for a long while before my huge flareup. In december I started feeling tired from morning to night , I was having nightsweats (began about 3 months ago and still have em) and I felt totally bloated when I had my coffee in the morning.

Then I started passing big quatities of mucus, often even without stool. I was feeling like I had a sinusitis but from my butt! (This was 2 months ago)

I went to see a doctor, he examined me and told me it was just irritable bowel syndrome and that I should carry on with my life. I continued passing huge amounts of mucus with blood in it. I didn't have diarrhea though.

I went to see another doctor a month ago cause it wasn't stopping by itself like the first doc told me. The second doc had me take blood tests and my results were crazy! He scheduled me for a colonoscopy for next june. He told me that he couldn't do anything else before my scope... I was trying to do my things, continue school ( I was on my last  "apprenticeship"  and then I was graduating) but I couldn't take the bus and the metro to get there cause I was starting to have really painful spasms and cramps and violent diarrhea. I endured this for a while (I am studying to be an embalmer and I had to take all me protective gear and run to the bathroom in the middle of an embalming, it was hell).

3 weeks ago I started to have mad diarrhea, cramps, passing mucus, blood and even some intestinal tissue.. I went to the emergency 3 days ago and got hospitalised.

Thank god they gave me a colonoscopy today, I have now lost about 15 pounds (so now that makes me 5'4'' , 115 lbs!

THis is my story. I hope the worst is now behind me....

 

Posted 3/19/2009 11:17 PM (GMT 0)
By metro I meant subway... Frenchie glitch sorry !
Posted 3/19/2009 11:38 PM (GMT 0)
Hi, just wanted to say never, ever feel ashamed or have any bad feelings about what you are feeling and that you express them here, like everyone said, we are all going through pretty much or have gone through all of this and it makes a world of difference to talk about it

PinkPaperclip said...
Hi everyone, I have been reading posts on this forum for a little while since I doubted I was going to be diagnosed with UC or crohn's very soon. I got the diagnosis this morning, after a colonoscopy.

I am 25, (from Québec, Canada) and my diagnosis is pancolitis (the whole colon). THe specialist told me that my colon was in a very very bad shape and that it would take some time to heal. I started prednisone and mezavant today, hope I will feel a little better soon...

I am very anxious about what's coming up for me next... I'd like to know how you guys reacted, and how you managed to find all the info and support to get better. I don't know what to expect for the next few weeks

Any input on diet/medication/etc will be appreciated.

By the way my main language is french so it explains my poor english ;) I do my best!

Posted 3/20/2009 2:59 AM (GMT 0)
Thank you so much everyone for your kind words. It really helps me dealing with my emotions right now.
I still have a lot of things to figure out, how to eat, what type of activities I can do ( I used to love spinning classes and cross country skiing... I think I will forget about that for a while!) I also have to bring my 3 cats at my dad's place since I will stay here for my convalescence and he's not appreciating that at all. I have so many things to think about and I probably my mind is just tired (malabsorbtion might do that to you huh??). The idea of quitting school till next year is making me feel like I have lost a battle. But like the really kind nurse I talked to this morning said, " On ne peut pas se battre sur tous les fronts en même temps" the direct translation would be "you can't fight on every side at the same time". So I choose to get well before anything else.

I don't know if I am hallucinating but it seems like I have had less cramps and less bowel movements today. I took my first prednisone and mezavant doses this afternoon???

Thank you for your words. I can't wait to know you better my new friends with fragile colons :P
Posted 3/20/2009 3:11 AM (GMT 0)
Your nurse was so right when you have your health you have wealth.  The main thing is for you to get better.  Make taking care of yourself your priority.  It's true you have everything to have your health.  Take care of yourself.  Whenever you are worried or have questions, please don't hesitate to write.  It does wonders to talk to others

PinkPaperclip said...
Thank you so much everyone for your kind words. It really helps me dealing with my emotions right now.
I still have a lot of things to figure out, how to eat, what type of activities I can do ( I used to love spinning classes and cross country skiing... I think I will forget about that for a while!) I also have to bring my 3 cats at my dad's place since I will stay here for my convalescence and he's not appreciating that at all. I have so many things to think about and I probably my mind is just tired (malabsorbtion might do that to you huh??). The idea of quitting school till next year is making me feel like I have lost a battle. But like the really kind nurse I talked to this morning said, " On ne peut pas se battre sur tous les fronts en même temps" the direct translation would be "you can't fight on every side at the same time". So I choose to get well before anything else.

I don't know if I am hallucinating but it seems like I have had less cramps and less bowel movements today. I took my first prednisone and mezavant doses this afternoon???

Thank you for your words. I can't wait to know you better my new friends with fragile colons :P

Posted 3/20/2009 3:57 AM (GMT 0)
Welcome pink,

My main suggestions are taking a good probiotic daily and fibre supplements daily as well (both indefinitely, even once you get into remission), double check with your GI about the fibre supplements (my GI was the one that urged me to take them).

And of course, eat as healthy as possible, avoiding processed foods/beverages, fast foods, animal fats, caffeine and refined/processed sugar and artificial sweetners...get plenty of sleep and a little exercise as often in a week that you can.

:)

Posted 3/20/2009 4:28 AM (GMT 0)
Hi
PinkPaperclip - what a cute name! :)

Welcome and sorry that you are here with your diagnosis. My daughter was better after taking just one dose of Prednisone so don't be surprised if you are feeling good tomorrow! Get some rest and take it eay. I am pretty new to this disease too so I don't have too much info to share
Posted 3/20/2009 8:45 AM (GMT 0)
Hello molly, pb4 and mustlovedogs!

I was wonderring about the probiotic and fiber supplements... My GI told me to avoid fiber in my food, but a fiber supplement can help? And also , what " bacteria" in my probiotic should I look for?
Are probiotic yougurts okay to eat? I am a litlle bit lactose intolerant but I think my intestines don't get too upset when I eat that kind of yogurt (still would have to retest it).
Oh and can I eat plain white bread (toasted or not)?

as you ca see I am afaid to make my situation worse... I so don't want to be hospitalised again!

I found that my aunt has been living with UC for 19 years now and she's doing well! She gave me some hints and I am starting a journal with my experiences with food, the okay foods and the foods that make me sick.

With this forum, my aunt and my GI I think I'll get UC savvy soon enough.

Thank you thank you!!!!

Oh and thank for the comment on my username mustlovedogs ;)
Posted 3/20/2009 11:21 AM (GMT 0)
I think it's awesome that you know someone in person to help you! That is a huge bonus if you ask me. I just wanted to comment that just because you got diagnosed with Uc it doesn't mean that life as you know it is over. You can still get out there and do things. Sure a flare can make things a bit difficult to do that but once you start feeling better, there are no limits on what you can do.
Posted 3/20/2009 1:48 PM (GMT 0)
Thank you red_34

I am a little anxious today as I begin to realise whats is happening to me. I will do my best to stay optimistic and active. Took my second dose of pred this morning and I am just anxious about starting to see my body change... Hope I won't have to many side effects.
Posted 3/20/2009 2:15 PM (GMT 0)
Hi pinkpaperclip,

It is true what the forum moderator said your life is not over one bit. Like I said before I have had colitis for 40 years. I have always worked in my adult life, rarely ever missed work over it, graduated from school, went to college, had fun. There are sometimes some tough days, but it is like you adjust to what works for you and it all seems to get figured out and what doesn't and you need help, you have places like that, family members, your doctors to turn to for advice. Try to stay positive. When I first had colitis I stayed away from firbrous food, so when I wanted bread, I had sourdough sliced french bread. the probiotics I use have billions of good bacteria in it and you can ask for it at the drugstore it does need to be refrigerated and comes in capsule or powder form to mix with drinks and it is called VSL#3. It is costly. They have just come out with the same thing except with even more good bacteria in it again it's VSL#3 and can now be gotten with a prescription. NOt all insurance companies cover it, as most think of it as a food supplement only. But talk to your doctor about that and see what they say. I would definetly say caffeince is not a good choice like coffee or soft drinks, I did at times drink 7up if I wanted to have a carbonated soda, but now mostly drink water or herb tea. I don't eat milk products so like I said I get the probiotic through this VSL#3. Hope this helps...Molly
Posted 3/21/2009 12:01 AM (GMT 0)
Hi molly, yes yes your inputs always help!

I have heard of that VSL#3 I think it was only recently introduced in Canada. I will try to gat my hands on that kind of stuff (my next appointment with my GI is in a month I will also ask his advice). Meanwhile my aunt told me she eats vanilla flavored probiotic yougurt (like activia) I might retry that. THere's something about fiber supplements too.. some ppl told me it would be good for me but I don't know much about this... So if anyone can shine a light on fiber supllements for me, would be appreciated. :) Sourdough bread didn't make you bloaty? That's interesting, I love sourdough bread hehe.

I radically changed my eating habits even before I was diagnosed cause I had a doubt this was coming. I quit all caffeine, irritants, spices (I love mexican food :( ) beans, vegetables and fruits and whole grains. I don't eat junk food and nothing to drink except water and herbal infusions (chamomile) or soy or rice drinks. Today I went to do my first UC grocery! I got myself some rice milk, soy puddings, white pasta, chicken and fish, plain rice cakes, of course crispy rice cereal, I even found some non-lactose ice cream made from rice grain. Tonight I had some fresh fish and a baked potato without the skin and it seems to be okay.

Is there something special about eggs? Are they okay or not? I fear they are too fatty, but maybe you guys have more info on this ... And the plain and sad white egg omelette is not appealing lol

Thank you so much everyone! I am learning fast I think!
xoxo
Posted 3/21/2009 12:19 AM (GMT 0)
Hi, I'm certainly chatty today.  I don't think I had a problem with sourdough bread, at the time way back, I didn't have anything on it, now I put a little butter or even creamy peanut butter.  I take fiber.  It's the chewable ones, pretty easy.  I too eat chicken, baked potatoes, I don't do soy, but I find myself eating a lot of things I shouldn't, so going to be more diligent about it, see how it does for me to be eating better.  Well, it sounds like you are doing all that you can for yourself which is great.  For me right now, I tend to eat starches a lot, but want to eat less of it because of taking the Prednisone and high sugar levels.  I do not eat mild products, don't know if I can tolerate too much fruit or veggies, so just going to have to see.  For me, the worst of going to the bathroom happens in the morning hours, after that it doesn't seem to be a problem and it's just that it generally is a small amount.  What my doctor is trying to achieve is to be able to clear up the inflammation in the rectal area so that I don't have that dire emergency and can't make it to the bathroom in time.  So taking the Prednisone and this new immunosuppresent, which was really hard for me to do, had to talk to a lot of people on this site about that.  Seems as though of course everyone is doing different things all trying for the same outcome which is to feel better and deal with UC the best we can...Molly.  Beginning to think Prednisone is making me talk a lot...LOL tongue

PinkPaperclip said...
Hi molly, yes yes your inputs always help!

I have heard of that VSL#3 I think it was only recently introduced in Canada. I will try to gat my hands on that kind of stuff (my next appointment with my GI is in a month I will also ask his advice). Meanwhile my aunt told me she eats vanilla flavored probiotic yougurt (like activia) I might retry that. THere's something about fiber supplements too.. some ppl told me it would be good for me but I don't know much about this... So if anyone can shine a light on fiber supllements for me, would be appreciated. :) Sourdough bread didn't make you bloaty? That's interesting, I love sourdough bread hehe.

I radically changed my eating habits even before I was diagnosed cause I had a doubt this was coming. I quit all caffeine, irritants, spices (I love mexican food :( ) beans, vegetables and fruits and whole grains. I don't eat junk food and nothing to drink except water and herbal infusions (chamomile) or soy or rice drinks. Today I went to do my first UC grocery! I got myself some rice milk, soy puddings, white pasta, chicken and fish, plain rice cakes, of course crispy rice cereal, I even found some non-lactose ice cream made from rice grain. Tonight I had some fresh fish and a baked potato without the skin and it seems to be okay.

Is there something special about eggs? Are they okay or not? I fear they are too fatty, but maybe you guys have more info on this ... And the plain and sad white egg omelette is not appealing lol

Thank you so much everyone! I am learning fast I think!
xoxo

Posted 3/21/2009 12:55 AM (GMT 0)
So I see I am normal to go to the bathroom like 3 times in a row in the morning and then I can have a pretty normal day (this is only 2 days of treatment!!!! wow!) I went grocery shopping this morning and I felt I really had to go but decided to try to control it and the cramp went away (whew).. (Maybe I should wear diapers when I go out hahaha) I will have to not be shy to ask for the bathroom in any store.. even the supermarket ... all of this is making me laugh tonight, maybe prednisone induces some kind of euphoria. Lets hope I feel good because I am starting to get better and accepting the UC diagnosis :) Do you have problems with soy products or you might just find em gross lol ? I don't seem to have any but it's all too new to really know. I am doing everything I can and UC won't get the best of me!!! (And you neither) :) xoxox
Posted 3/21/2009 1:10 AM (GMT 0)
Let's high five to not letting UC get the best of us!!!! tongue

PinkPaperclip said...
So I see I am normal to go to the bathroom like 3 times in a row in the morning and then I can have a pretty normal day (this is only 2 days of treatment!!!! wow!) I went grocery shopping this morning and I felt I really had to go but decided to try to control it and the cramp went away (whew).. (Maybe I should wear diapers when I go out hahaha) I will have to not be shy to ask for the bathroom in any store.. even the supermarket ... all of this is making me laugh tonight, maybe prednisone induces some kind of euphoria. Lets hope I feel good because I am starting to get better and accepting the UC diagnosis :) Do you have problems with soy products or you might just find em gross lol ? I don't seem to have any but it's all too new to really know. I am doing everything I can and UC won't get the best of me!!! (And you neither) :) xoxox

Posted 3/21/2009 2:24 AM (GMT 0)
Hey PinkPaperclip, I hope you feel better soon. My daughter, who is 17, was diagnosed last year.What we have learned is that diet affects people differently, so you need to try and try until you find what works for you. Write down your questions and anything you feel wierd in a notebook and bring it with you on your doctor visits. You only get a few minutes with the Doctor and it is easy to forget those little things that bother you.
**Important. As soon as you get a cold or an infection that requires antibiotics, be ca reful taking them. Antibiotics can wreck your gut make you worse. Some pain medicine can slow your digestion and hurt your colon in a different way. Also be aware that you may develop kidney stones. With my daughter she suspects the kidney stones begin to announce their existance with feber, feeling nausea and back pain that can be confused with a side effect of your prescribed medicine. Our Doctor recommended drinking Fresca or lemonade made from real lemons, something about that citrus that helps prevent kidney stones. Your digestive system is so fragile, You need nutrition to survive and your colon limits you on the things you can eat.
It is good to consider a Multivitamin, extra Calcium and Vitamin D. Believe it or not the sun is the best source of vitamin D, our Doctor says 15 minutes a day of exposure if you can tolerated without sunscreen. My daughter was delighted to find out that going to the tanning salon was good for her. She goes in for only 5 minutes 4 times a week to keep it safe. We live in Rhode Island. Cosullt with your doctor (with your notes) always. Good luck!
Posted 3/21/2009 2:35 AM (GMT 0)
I have had kidney stones twice and think it had to do with not drinking enough water at the same time taking Azulfidine. My urologist at the time said people who get kidney stones usually get them again, that was distressing to hear. I'ts been quite a few years ago that I had them, but don't think I quite have forgotten the pain or the nausea. The food really is a try and see what works and I couldn't agree more with writing down questions, I do it all the time and makes all the difference in the world to get your questions answered.
Posted 3/21/2009 4:50 AM (GMT 0)
I just wanted to say hi & i'm happy that you have found this great site!!! Good luck & remember always know where the potty are!!! :)
Posted 3/21/2009 7:12 PM (GMT 0)
Thank you for your suggestions I will note everything down and bring this to my doctor :) I really want my health back! :)
Posted 3/21/2009 7:36 PM (GMT 0)
Hi, how are you doing today.  Does today even seem a little better than yesterday?  Hope so

PinkPaperclip said...
Thank you for your suggestions I will note everything down and bring this to my doctor :) I really want my health back! :)

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