Ulcerative Colitis

[stemikger]

Hey folks, I was just diagnosed with UC and some weeks are really bad. I am going to Disney in 30 days and I'm hoping to be in remission that week.

Is there anyone out there with experience with this disease.

Any tips on diet, medications or natural remedies would be greatly appreciated.

Thanks.

 

[amberg@eastlink.ca]

i have had us for almost 16 years. thankfully right now mine is behaving itself! i feel your pain tho, diagnosed at the age of 15 when i was in high school, so embarassing!

i have been on prednisone numerous times to treat it, as recent as last summer after picking up norwalk virus. other than that i'm being treated with imuran. it's one of the newer drugs out there for it and i've been on it since 2002.

diet wise, i suggest for the first little while you keep track of what you eat, and trust me very quickly you will learn your trigger foods. mine is anything spicy, nuts of any type or any fibre.

the best advice i can give you is get lots of rest- and don't be surprised it you are put on prednisone and you become wired for sound, i always got very very hyper on it. rest is essential tho, the more you get the better. i find if i get rundown i'm more likely to have an attack.
the other thing i can offer, try to stay away from stressful situations, i know it's hard but stress is a trigger.
one thing i always do is when i am anywhere new i search for the bathroom when i get there. i often say to people there's no bathroom this nose can't find!!! lol

my docs put me on iron tablets as well as i was passing a lot of blood. even now i have anemia and i'm still taking it.

facebook has several crohns and colitis sites, you may want to check out. trust me it will get better! i promise you! so good that i had a scope to check on mine last month with no meds! my doc was only going to do 5 inchs, and since he was in there he figured heck let's do the whole thing!!!

there is also a thread on here somewhere, altho it has been a few weeks since any of us have posted to it.

 

[stemikger]

Thanks Amber. The weird thing I am finding as I research about this is that most people are young when they get it. I'm 45. However, I think I had it longer they were just misdiagnosing me.

I agree with you about the stress thing.

 

[amberg@eastlink.ca]

yes you're rite, most people are between i think 15 and 30 when diagnosed. the next common age group is the elderly, and both my great aunt and grandmother were dx'd at around 70. i had all the symptoms when we were told and it all made sense. more than likely you were misdiagnosed for years. when we first went to the kids hospital i was told by a resident it was probably just a fisure. my speacilist walked in and could immediatley tell i had anemia and suspected it was crohns or uc.

the more that time goes by the more i hear of it. when i finally went into the working world about half of my coworkers had one or the other. here in nova scotia the incident rate for it is quite high.

finding yourself a good gasterointerologist is key.

 

[TaraPA]

Welcome to the colitis club! Not a fun club to belong to. I was diagnosed as a child (they called it juvenile diveritculitis back then), then had a bad time with it in my early 20's, when they started calling it general IBS. Started having colonoscopies back then, and have them every 3 years (I'm 38 now). In 17 years of colonoscopies I've only had 2 polyps, and they were benign, thank goodness. Everyone is different. I go through months, if not years, of being 100% fine, then I will have months of endless diarhhea. Then months of constipation. For me, when I'm in the diarrhea bout, I have to avoid tomatoes, fiber, lettuce & fruits with a skin on them. When I'm in the constipation bout I have to take fiber supplements daily, and eat more fiber than I think is humaly possible. It took me a year to figure out what I could & could not eat. You will figure it out too!

I have never been medicated for this other than the OTC Miralax, fiber supplements, Immodium & laxatives. Thankfully I've been able to manage it without an rx...so far.

Stay in tune with your body, and you will soon learn what your triggers are. Make sure you have a good gastroenterologist & get check-ups regularly. Good luck!

 

[Tonya2426]

Welcome to our exclusive little club. I've officially had UC for 9 years and currently have it mostly under control by taking Imuran. I've done the prednisone route- even spent 8 days in the hospital with the IV stuff - and refuse to be put back on Vitamin P anymore. For me prednisone stopped working and has caused some major joint problems for me - but everyone is different in how they react to different meds.

Here are some of my tips:

Get a good Gastro doctor who has experience treating lots of UC patients. Not all Gatros are alike. I go to a doctor at the Mayo Clinic in Jacksonville and it is worth the 8 hour round trip drive. My Gastro #3 loved prednisone and didn't believe in immunosuppressants. After a miserable year I switched to my current doctor (Gastro #4) and he put me on Imuran which has given me somewhat of a normal life back - although I am do keep considering having my colon taken out so I will be "healed".

Listen to your body. Fatigue is a major issue with me so I rest when I need to. I get blamed for being a couch potato at times but I am convinced that the reason I have stayed out of the hospital again is because I rest when I am tired. (It is hard for people without chronic illness to understand fatigue but it is important for you to understand it.) If you get run down your body will spend all it's time keeping you going and not spending anytime healing.

Always know where a bathroom is so you don't get caught in a bind.

Don't buy cheap toilet paper. Your backside will thank you.

Figure out your trigger foods and avoid those foods especially when you are going to be in the car for any length of time. My trigger foods are vegetables, fruit, fiber but strangely enough I can eat all the fried food I want and not have any problems. (Not great on my waist line though.) I know that if I am going someplace within the next 6-16 hours that I need to avoid salads.

Be sure to get your eyes checked regularly by an opthamologist. UC can sometimes cause inflammation in your retinas.

Be careful about anemia. I've always had "low blood" but there have been times when I have been flaring that my iron levels have not even registered and the doctor wanted to give me transfusions. I'm sort of stubborn so I said let me take the iron supplement for a month and then we'll consider it. If you are bleeding at all, make sure you get your hemoglobin checked.

I'm sure I can think of more tips but those should get you started.

 

[stemikger]

Thanks for the tips everyone. I really appreciate the advice.

Steve.

 

[fluffycow333]

I have Chrone's Disease, which is similar to Colitis. You should check out CCFA, the Chrones and Colitis Foundation of America. You can join support groups, learn more about the disease, and find events located in your area.

I can't post links yet, but it is ccfa.org

 

[LuvOrlando]

Sorry about the diagnosis. I've had this since I was about 23 with it going in and out of remission for years at a time. It was worst when I was pregnant and after the pregnancies. These days, believe it or not, the Atkins diet seems to stop it in it's tracks for me. I don't know why but stopping all carbs and sugars seems to shut it down 'FOR ME', I don't know if this helps other people. I wouldn't recommend this unless you are healthy enough to give it a try.

With the prednisone, it's a case where the cure is as bad as the disease IMO. When I was on it after my DD was born I gained tons of weight, couldn't sleep and needed both sleeping pills to sleep at night and Xanax during the day to stay in a normal zone. I remember wanting desperately for them to take me off it but I was so anemic the Dr's threatened to put me in the hospital with an IV. I was on it for 3 months. Hopefully, your dose wouldn't be that high but if it is and you need it don't feel bad about asking for sedatives and sleeping pills while your taking it if you absolutely need them. I did

 

[Cowgirlroy]

I got UC five years ago. And after taking natural herb vitamins I was cured. I took them for about two and a half years and I am able to eat whatever I want again. I used to find that dairy bothered me. I'll post again with what I took and qtys.

 

[mommasita]

I have no advice, just offering up

 

[sandgrace]

I've had Crohn's Disease for over 10 years now. At first they weren't sure whether I had UC or Crohn's because they tend to be very a like in their symptoms. Luckily, I don't suffer from the symptoms right now as bad as I used to. The one thing that I have found was a big trigger for me was coffee, if you drink that you may want to switch to green tea, it made a difference for me. My thoughts and prayers are with you as I know how difficult the symptoms are to deal with.

 

[cmadara]

I have had UC for 20 years now- diagnosed at age 26. I use prednisone for when I have flareups and take pentasa to increase length of remission. I agree with the previous posters that prednisone makes you insane, but it does work. I also take both sleeping pills and xanax to help my stay in my skin so to speak!
Some things to think about:
- watch for blood clots. Didn't know that IBD makes you more suseptible to them. My sister, who had Chrohn's, died 3 years ago from a blood clot that traveled to her lungs after a surgery to remove 3 feet of her intestines.
-if you take prednisone, have bone density scans- it weakens your bones.
-find a good dr. I can reach mine through e-mail and he will get back to me that day.
-keep appointments! Even if you feel good, still go.
- years ago, they thought that IBD sufferers are more likely to get colon cancers. The risk isn't as high as once thought.
-As I listed above, my sister had Chrohn's disease. IBD tends to run in families- I think someone else posted this as well. Watch for signs with your children- so if they inherit it, it will be easier to diagnose early.
-the idea of trying to limit stress can sound crazy-but oh so important. IF you feel like you are loosing control with so much stress, contact your dr and ask about anti-depressants. 3 years ago, I had what my dr called the perfect storm. Within a 6 month period, my sister died, my brother was sent to Iraq for a year, my husband had a motorcycle accident and our cat of 14 years died. AND I went into a severe flareup-surprise! My dr advised me to go on antidepressants and I said no. Finally I relented and within a month, I was back in remission and feeling 100% better emotionally as well.

Good luck and pray for a cure!

 

[Cowgirlroy]

Hey all,

Just updating you all on what I took when I had UC. I took herbs called,

Flavonex
Istis Cooling
Rf Plus

They were recommended to me by a doctor we met in NYC cause her son had the same thing. I have been flare up free for over 6 years now, with regular movements. I don't know if the amounts of how many you take or how often depend on the person, I am no doctor. But thought I'd share what I took after trying everything and them telling me they are going to have to cut out part of my intestine.

 

[Bilberry]

The thread is a little bit old, but I'm in the same boat in someways as you. In November I'm going to Disney World for a week and worry a little since I have had a severe Gi issue in the past.

Happily, at this point, I've pretty much overcome my IBS. What helped me so much was eating a paleo diet, taking fish oil, and vitamin D3.

The paleo diet can be read about here:

http://thepaleodiet.blogspot.com/
&
http://www.proteinpower.com/drmike/

I take lots of fish oil, around 2000mgs of EPA/DHA a day. And for vitamin D3, I take 8000ius a day. That is how much it takes for me to reach a testing level between 60 to 70ng/ml.

A doctor whos blog I follow, Dr Davis, wrote a good article explaining how to correctly take the pro-hormone D3 - and that seems to have made all the difference.

"Getting vitamin D right"

http://heartscanblog.blogspot.com/2010/01/getting-vitamin-d-right.html

Hope your trip went well and your gut is doing fine!