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Posted 10/3/2009 5:57 AM (GMT 0)
I write to you from my living room.  This is not where I am supposed to be right now.  I am supposed to be spending the first Chuseok with my fiance's family.  Chuseok is a family holiday in Korea akin to Christmas for Christians or Passover for Jews.

Last night I started having bloody diarrhea every hour.  It didn't let up much overnight, and now I'm missing the chance at forming real bonds with my new family because of this STUPID disease.  I HATE it.  And I won't get to do this next year because we are moving back to the States next summer.

This diease is NOT FAIR!  I would curse, but this forum has moderation (and I want it to still be a respectful place).

Can anyone else relate to feeling like they are missing out on their life because of this disease?  Some days it's all I can do to go to work and come home.  And I have a MILD case--I can only imagine what those of you with more moderate to severe versions are experiencing.

At any rate, my fiance is being very supportive and understanding, but I know he's disappointed (I would be, too).  I worry now that something like this will happen on our wedding day or some other time that's just as awful.  I don't want to spend the rest of my life worried about what I'm going to miss out on next.

Posted 10/3/2009 7:40 AM (GMT 0)
Hi Diana,

I have been there.

Don't feel bad. Bloody diarrhea every hour is a more than a mild case.

I have a friend with UC who became a vegetarian. That was some 20 years ago. She hasn't had a flare since. I'm on an anti-inflammatory, no-foods-high-in-fructose diet. I'll eat fish and chicken, but no other meats. It works for me. Some people find the spinach and sunflower seed diet very helpful. There is much talk about it on this forum. Basically, it calls for eating lots of spinach and sunflower seeds or sunflower seed butter. I also eat lots of spinach and sunflower seed butter. If you can't find sunflower seeds or sunflower seed butter in Korea, then just about any nut or seed will do (except for peanuts, which are a legume). And then others find that they are sensitive to wheat, yeast, lactose, gluten, or fructose (like me).

I hope your diet works for you.

Can you buy probiotics in Korea? Many have found them to be of help.
Posted 10/3/2009 7:49 AM (GMT 0)
Oh, yes, according to Ayurveda, UC is a Pitta disorder, which means that being angry makes it worse. It's good to do some cooling, relaxing activities to cool off the angry feelings. I know--that's hard to do when you feel so angry.
Posted 10/3/2009 12:51 PM (GMT 0)
I can understand the anger. I've missed out on many of my kids school functions because of me flaring. I've even missed out on a few social outings with friends.

I agree that going every hour is not considered mild. I would say it's in the moderate to severe range. Are you still only on 6 Asacol a day? If so, this is considered a maintenance dosage and not a treatment dose. Treatment dosing is 9-12 a day. If you are still only on a suppository you may want to switch to an enema. With an enema, you get more coverage in the large intestine.

Hang in there! We've all been in your shoes and we know what it's like to have our Uc stop us from doing things. I try not to let it stop me but there are just some days that it's impossible.
Posted 10/3/2009 1:02 PM (GMT 0)
I know exactly how you are feeling, i feel angry that this disease is stopping my life, it stops me from getting the job i want, it stops me from going out where and when i want, and it also limits what i eat. I am only 28 years old, and i often sit at home and wonder why this had to happen to me.

I am unable to take any medication for my disease, my digestive system is so sensitive, i even get chronic bloody diarrhea from just taking calcium tablets!

You are not alone in how you feel, please feel free to email me using the email address in my profile, if you ever want to talk to someone going through the same as you.


xx
Posted 10/3/2009 1:55 PM (GMT 0)
I am also right there with you. A few weeks ago we were suppose to go to a wedding and my husband had to go to the reception alone because I could not trust myself. I do not go as much as you but I have a lot of bleeding and when I have to go I cannot hold it. You are right it certainly feels unfair and takes a lot out of your life when you are in a flare. I am trying the SCD diet a long with my meds. However, diets take awhile to help if they are going to help at all and the waiting is frustrating. I am so sorry you are going through this and hope you get some relief. I have trouble even going to the grocery store and work because I never know when it is going to hit. So believe me, I feel your pain.
Posted 10/3/2009 2:16 PM (GMT 0)

Yes, I missed a family trip to France because of UC and was so mad at giving up 2 years of my life trying to get in remission that I opted for surgery.  In the 8 years since surgery I have not missed on opportunity or broken any commitments due to my new plumbing.  I am living a full life and grateful for no longer having UC.

Sue

Posted 10/3/2009 3:14 PM (GMT 0)
Yeah, it sucks.

I'm like you-my case is pretty mild, comparitively, but when I'm flaring it messes up my life so bad. I was in a minor flare for my 21st birthday, before I was diagnosed, and couldn't even enjoy it because the food and the alcohol I was trying to have just hurt my stomach so much. I've had to drop classes because of it, and have ended up with poorer grades in others than I should have.

But I find it's the little stuff that makes me the most angry/resentful. Like no longer having my cup of joe daily, and knowing that if I do have it, there will be unpleasant consequences later. Or being able to go drinking with friends without having to worry if my colon is going to react badly. Or not being able to eat certain things that I like, like tempura or brown rice.

Subdued-they have little probiotic shots in Korea, my ex-roommate (who was fresh off the boat) used to have them all the time. I forget the brand but they taste like orange sherbert.
Posted 10/3/2009 11:41 PM (GMT 0)
I missed so much of my life, going out with friends, eating,working.  My final straw was when i missed my son playing in the ocean for the first time.  I missed 8 years of my life because of stupid old UC and that was it, i was done. 

So i totally understand how awful it is to miss things, and how mad you get at the disease.

And honestly, until i had surgery and got cured, i didnt even realize how many things i was missing out on, and got even angrier for letting it go on so long.

Now i miss nothing, and its great.

I also agree that you have more than a mild case, and need some more meds or something.

Anyway, hope you get to feeling better.

Posted 10/3/2009 11:54 PM (GMT 0)
I have been disappointed that I didn't feel comfortable doing things I used to love, like go boating or hiking or picnics.
But I am lucky in so many other ways, I don't get upset about it.

Lots of people have limitations, whether it's a disability, or money, or responsibilities, or whatever. This is ours!

Be disappointed, don't be angry.
Posted 10/4/2009 1:37 AM (GMT 0)
Oh, I'm sure they wouldn't mind you running to the potty all the time, though I understand it's embarrassing and frustrating so I don't really blame you for not going. Just make sure they know why =)

I would also up my Asacol. Any chance you could call your GI? Or if you can't I'd at least go to 3 at 3xday, even though you should really talk to your doctor first. But since it's Asacol I feel relatively comfortable telling you do that. It seems pretty safe.

Probiotics, supplements (I say try turmeric) and diet changes may help. Depends on the person. It doesn't hurt to try. Good luck!

Oh, and I want to add: try not to get too discouraged yet! You haven't had it very long yet (I know it seems like a long time), it takes time to find things that work =) I'm sure you'll find something!

Posted 10/4/2009 3:08 PM (GMT 0)
Thanks for the words of support, guys. I'm a lot better now. I've had an extra-stressful week (my mom was rushed to emergency surgery a week ago and I responded by stress eating... can't do that anymore--it's possible that I also wasn't paying much attention to my meds), so the frequent, bloody d really was a complete fluke for me. I'm calling my GI if it gets that bad again.

My fiance has been taking good care of me. And it looks like his uncle's 70th birthday party in a couple weeks will be another chance to meet a lot of the family before the wedding. I was just really angry a couple days ago.
Posted 10/4/2009 5:24 PM (GMT 0)
I agree that it doesn't sound as if you have a "mild" case (remember, the c-scope is just one picture in time...things can and do change!). It also sounds to me like you're undermedicated, given your symptoms. You might want to talk to your doctor about upping your Asacol dose and using an enema instead of a suppository, as enemas reach much higher up in the colon. Also, look into probiotics.

My first flare started in Nov 2008, about four weeks after my son was born, and I wasn't diagnosed until the very end of January 2009. So, I was incredibly sick for most of my son's first six months. I was unable to take care of him like I wanted to (I had to leave a lot of the care to my husband at times) and I was so sick I didn't enjoy him like I should have been able to. But, I sucked it up and got over it. I realized that having him kept me from focusing on my diagnosis and feeling sorry for myself. I also realized that rocking a baby is pretty darn good therapy, and made me feel better when I took the time to enjoy it.

I also learned just how strong my husband and my's marriage is. We got through all of that without having and family close (we live in WA state and they all live in MI and IN) to help out.

So I guess my advice is to try to look for the silver lining. It's probably there. You'll still be able to get to know your finace's family and you'll probably be able to celebrate this holiday with them sometime in the future. I won't get my son's first six months back, but I've come to peace with it.
Posted 10/4/2009 11:04 PM (GMT 0)

Peety said...
I have been disappointed that I didn't feel comfortable doing things I used to love, like go boating or hiking or picnics.
But I am lucky in so many other ways, I don't get upset about it.

Lots of people have limitations, whether it's a disability, or money, or responsibilities, or whatever. This is ours!

Be disappointed, don't be angry.

Almost at the end of my chain. Really diving me nuts for the last year. 20 years ago I stopped smoking and I had symptoms of Ulcerative Colitis which the doctor helped with having me take fiber. This did help but once I went back to smoking it never showed again for 20 years. After stopping smoking due to a breast cancer problems it reappeared and much worse. I am trying to get suggestions from people who have had this and solved the problem.

  My Doctor put me on asacol and prednisone during the last year. The doctor took me off asacol and kept me on prednisone. This does help when up around 60mg a day. When he weens me off prednisone the  Ulcerative Colitis starts up again when I get down to 25mg so back up we go to 60mg again. Now the doctor is weening me off the prednisone and giving me Mercaptopurine 100mg per day. Still having problems and need some help in suggestions or maybe someone can tell me will this eventually work. Is there another treatment that seems to be better. Having trouble functioning at work or in normal life. In my late 50's and really could use help. Maybe some type of diet etc. may be helpful. Maybe another site is better? Please help!  Can you e-mail me I have questions about the remicade 

** Took out email for your own protection -- add it in your user profile and it will show up as an envelope so people can email you. -- Carol        

Post Edited By Moderator (Lonie) : 10/5/2009 7:32:55 AM (GMT-6)

Posted 10/5/2009 1:34 PM (GMT 0)
Paticus; search for info about Remicade by going to the top right hand corner and do a Google Custom Search; or if you prefer, start a new thread about Remicade questions.

Posted 10/5/2009 6:36 PM (GMT 0)
Thank you for you responses. You guys really do your homework! Amazing. I guess the doctor is putting me in the right steps. Lets see if the mp6 will work. Just in case I made an appointment for next week to get a TB test and we will see from there. Thanks Guys! Paticus.
Posted 10/6/2009 11:19 AM (GMT 0)
I was in the middle of a flare and had to go to a conference and work at a booth all day.
I was able to get through it by taking Imodium AD.
Don't know if it will work for you. Just a suggestion.
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