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Living with UC, tips and pointers?

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Ulcerative Colitis
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Posted 12/22/2011 7:37 PM (GMT 0)
Hello everyone, my username is Xlife. I am 18 years old. I was diagnosed with UC about a month ago. I thought it was just a stomach virus that goes away. I took my first round of medication, and I found out that was not the case at all. Now my dad's side of my family has a long case of stomach issues. So I'm thinking I got it on a account of that. My uncle has had it for 3 years now. However he has a lot of other things wrong with his stomach. Besides he think it's ulcers, due to nearly everyone in my family having ulcers or some other kind of stomach issue. All my sisters have acid reflux, my brother had ulcers.

I am very knew with this and I have no idea how to really live with this as this came to a shocker as me. Can any of you guys who have lived with this over the years give me advice. Like what will I be dealing with, what stuff will help keep the inflammation down?
Posted 12/22/2011 8:13 PM (GMT 0)
Xlife, wonderful to meet you!

I think for me, the most helpful thing has been finding a good GI doctor who is willing to work with me and let me try new things. Unfortunately I have never had much luck with alternative treatments but I am a person who has done well with medication once I found what works for me. Rectal medication has been a big help for me.
Posted 12/22/2011 11:31 PM (GMT 0)
Thank you for the welcome :)

This seems like a great community to talk about medical problems with. I am on meds. Azulfidine 500mg and I was on some other stuff. Prednisone 20 MG, but not anymore. It helped out a lot. Hopefully that will keep the inflammation down. I found high acid soda to hurt my stomach. So I cut back to zup and sprite.

What kind of foods should I stay away from. I'm staying away from greasy foods. What else would you recommend ? Does the stuff I eat really effect it?
Posted 12/23/2011 12:14 AM (GMT 0)
Xlife, welcome to the community,

You'll find that its trial and error with most everything to each person with this disease. When I was diagnosed I was in a lot of pain, take a look at my signature, this regimen I have has been using has really really helped me. Look into Aloe Vera Juice/L-Glutamine and herbal teas (which coat and restore the mucus lining of the stomach), and Probiotics (which balance out good bacteria : to bad). And most of all, stay strong, never give up, there's always options for getting your symptoms in control.
Posted 12/23/2011 12:45 AM (GMT 0)
What you will be dealing with varies greatly from patient to patient. Some people have one or two minor flares their whole life, others never hit remission and end up in surgery.

As for food I would recommend staying away from caffeine in a flare. Anything else is purely individual. Greasy foods upset many peoples stomachs even when they are well. Many people find that a low-residue diet helps symptoms during flares. Others follow special diets they claim puts them in remission. Certain probiotics seem to be helpful as well. Omega-3s are iffy, but they certainly can't hurt!

Make sure you find a good GI that you are comfortable with and go see them regularly. Also, over time you will learn to figure out cues from your body that will let you know when you're flaring or when a flare is over. Pay close attention to them and if you catch yourself starting to show symptoms, get an appointment with the doc immediately. Getting a flare under control quickly will help lessen the severity.

I also suggest starting on a calcium/D3 supplement and a daily multi, since you've been on prednisone.
Posted 12/23/2011 3:19 AM (GMT 0)
I don't take Prednisone anymore. I guess I don't need it.

This is all new to me! I learned so much about the UC browsing the boards.

My DC recommends a GI Specialist, to make sure the C/T Scan didn't miss anything. I'm really nervous. Today was a rough day.

I just noticed, and I'm embarrassed to speak about this. However when I go, number 2. I notice when I wipe, blood is on the toilet paper. Not in my stool, but when I wipe it's a little bit of blood on the toilet paper. I didn't even notice until my rectum was starting to hurt. So I wiped and looked, and a little bit of blood was on the toilet paper. Is this Common, or do I need to speak to my Dr. about it. I mean I hate taking medicine. Especially Azulfidine 500mg it makes me pee yellow.
Posted 12/23/2011 3:31 AM (GMT 0)
You still want to take the supplements to restore any bone loss while you were on the pred.

As for your second concern, you could have a hemmorhoid or a fissure, or your butt could just be chafed from wiping a lot. I recommend using some baby wipes and/or witch hazel to soothe the area and avoid further irritation.
Posted 12/23/2011 3:37 AM (GMT 0)
I will take that advice, thanks a lot man.

I appreciate it a lot.
Posted 12/23/2011 4:15 AM (GMT 0)
xlife, make sure you see the GI & don't foget your calcuim & vit.D. I was just diagnosed in October & hate the fact that I'll be on meds for life. But, we have to. And in the end, swallowing a few pills to ensure a "normal" life is nothing. Right?
Posted 12/23/2011 7:36 AM (GMT 0)
Right, "aint so bad" lol. It could be far worse. Seeing so many others having to live with it along beside me. Makes me feel a lot better. Knowing I have support. Much Appreciated guys.
Posted 12/27/2011 3:28 AM (GMT 0)
Everyone I know (including myself) who avoids the following foods, finds relief from pain, bleeding, and acid reflux; sugar, starch, and milk.

Keeping your diet as simple and as natural as possible goes a long way. This is very difficult to do, but once you get used to it, you can get relief on most days.

We grill several kinds of meat (beef, chicken, salmon) once a week, along with some veggies (cauliflower, broccoli, carrots, onions, etc.) Mealtimes are easy all week, because we just reheat meat and veggies, eat fruit (grapes, bannanas, oranges, berries, etc.) for snacks, also cheese slices and raw nuts or roasted, salted peanuts. We make yogurt from scratch, using honey and fruit for flavoring. The only starches we eat are squash and beans from scratch.

You would not believe the difference in how you feel, but like I said, it's almost impossible to maintain this everyday, especially if you work away from home.

Try it for a month or so if you can, just know it'll be difficult to get used to at first.

-Scratch

Posted 12/27/2011 8:11 AM (GMT 0)
Some tips from my experiences:

1. Never give up on finding a solution for your condition. There is something out there for everyone.
2. Avoid caffeine (instant flare), fake sugars (instant flare), broccoli (very gassy), soda (gassy), milk or anything with lactose may cause issues.
3. Keep a food/medicine/gut health journal. Yes, its a pain to do but it will help explain things when you have a flare.
4. Probiotics are good but avoid the cheapo ones you find at a department store. They can cause additional health issues due to the extra additives used. A cheepo brand help send me to the ER. It took a Hallistic doctor to figure that one out.
5. Read the ingredients on everything you eat before you eat it. If your away from home, ask questions before you order something. It's the difference between enjoying your meal and your evening or spending most of your time in pain in the restroom.
6. There are some foods that react to some but may not react to you. Example: I can have many different types of beer.. but not wheat beer (flare). I can eat fresh Oranges but not Orange juice (gassy).

No lie, living with UC is a constant battle but I have found it to be both challenging and to be quite the adventure. By adventure I mean I have learned more about my GI track, what is wrong, how to make it better, and many types of alternative but very promising non fda approved treatments out there. I have also found a certain sense of adventure in trying new foods that are better for my health.

You will find something that works for you. Keep your chin high and never give up. To me UC is like that big boss at the end of the game. You will eventually beat it one way or another.
Posted 12/27/2011 2:22 PM (GMT 0)
hello Xlife, the first thing u did right was join this very informative forum.wish I had done so 12 yrs agos when I was first diagnosed but I ran away from the problem instead of facing it head on and let the disease control my life. my advice don't ever let that happen to u. there are a lot of vitamins minerals and supplements u can try. try the omege3 fatty acid about 1 mg a day, and probiotics like VSL3.

also cooking from scratch works really well for me.
foods that may cause gas/pain: soda,caffeine , chocolate,gluten any dairy, gassy veggies,potatoes,fried foods ( I can't eat fruits except bananas) but remember this food list is individual based there may be many things that u can eat but others can't.

and of course rectal meds like rowasa or canasa.
good luck to u and stay strong and positive I know it's hard but we must!!!
Posted 12/27/2011 7:24 PM (GMT 0)
 Hi  if you are looking at foods and recipes for UC i have found the foolowing book very usefull and informative it is Cohn,s & Colitis Diet Guide includes 150 recipes Authers Dr A Hillary Steinhart& Julie Cepo i think its published by Robert Rose at  www.robertrose.ca

 i bought mine through Amazon

 

Posted 12/27/2011 7:39 PM (GMT 0)
Hi xlife! Welcome to the forum. I'm glad you found us; this is a great group of people.

The blood you're seeing on the toilet paper could be from your colitis, an anal fissure or a hemorrhoid. I would mention it to your GI specialist when you see him or her. If it's not much blood, it's nothing to be too alarmed about.

Some advice:
1) Stay on your meds.
2) Get plenty of sleep every night.
3) Eat a healthy balanced diet. Too much sugar and too much greasy food seems to make my colitis act up. Other than that, I'm able to eat mostly what I like. When I'm flaring, I try to avoid raw veggies.
4) Rest when you need to. Allow time for your body to heal.
5) Exercise when you can.
6) Rectal meds like mesalamine enemas (brand name in U.S. is Rowasa) are great at treating rectal inflammation.
Posted 12/27/2011 8:08 PM (GMT 0)
Welcome!

I agree with everyone, you have to trial and error this part of things... but take your meds and rest when your body tells you to are the most important I think looking back when I first got diagnosed... I didn't want to accept my life with limitations when I am not feeling well and would over do it and then have a few bad days. I do take supplements and it has helped a lot for me... recently had a sinus infection that caused me a mild flare that was booted by a short round of pred... This forum is a super great place to talk about stuff you don't want to talk about... we all understand! And it will get easier for you to talk about it the more you share or comment for others... and reading posts, it helps to answer alot of the questions in your mind.
Good Luck to ya!
Posted 12/28/2011 1:41 AM (GMT 0)
Hi Xlife and welcome!

It sounds as if you already have a decent understanding of what your dealing with.

Your understanding of the diet is a great place to begin. Once you find out your trigger foods the rest pretty much falls into place.

Holidays aren't easy as people that don't understand your diet try to push foods on you that you may regret later.
At least for me that has happened.

Antibiotics can mess with your system, so you need to be careful when taking them.

Doctors don't always have the right course of action so you need to be proactive and follow the path/plan that works best for YOU.

Happy Holidays and so much of what you need to learn comes from places like this.
Posted 12/28/2011 1:52 AM (GMT 0)
hi Xlife, some good advice above. welcome to the "club" :-)

I'd recommend seeing a integrative doctor, maybe GI integrative doctor near you, also a nutritionist/dietitian so you can learn what to look for in food and what to avoid. We're all different in our disease, what works for me may not work for you. Definitely try and get enough sleep nightly, and try and stay active with some exercise you enjoy. Many doctors who don't understand UC may recommend Antibiotics from time to time but that really messes with UC, always check with your GI/Integrative Dr. until you get a feeling of what's okay for you.

check out this MD Dr on TedX, it blew my mind. Video is 18min long so allot enough time
http://www.youtube.com/watch?v=7tu9nJmr4Xs&fb_source=message

hope this helps.
Posted 12/28/2011 2:08 AM (GMT 0)
Who diagnosed you? Was it a gastroenterologist? Was it via colonoscopy? I hope it was a good GI doctor. A family practice doctor who made a best guess is not what you want. UC is a complex disease and one size treatment does not fit everyone.

You are going to need to be flexible in dealing with this thing. If you are put on certain meds, then make sure you use them according to the instructions. If you use the various enemas, then learn to hold them in all night or according to instructions.

For some people, diet can help. For others, it is not an issue. My GI doc advocates using probiotics in yogurt.

Don't get taken in by the many internet promises of a cure. No cure apart from having the entire large intestine removed. For my part, I wish I had had surgery earlier rather than later, but then I'm 65 and not 18. I have a son, now 29, who was diagnosed when he was 15. He has been careful to use his meds as prescribed.

Lastly, I assume you have some sort of health insurance; perhaps on your parents. You can stay there until you are 26. Now, I suggest you prepare for a career that will keep you employed with health insurance. I don't know about others on this forum, but UC is expensive to treat. Prednisone is cheap. Remicade and Humira are outrageously expensive. You need to prepare yourself for a long haul.

Wish you the best of everything.
Posted 1/3/2012 9:50 PM (GMT 0)
I just posted on probiotics - its something that I diminished early on but really made a big difference for me - see "my 2 cents on probiotics."
Posted 1/4/2012 3:11 AM (GMT 0)
I went to a naturopath that game me very good quality supplements and a strict diet to adhere to I am now medication free and in remission it beats the hell out of rectal enemas and medication if you can stick to a diet and only if it works for you. But if things dont work for you keep looking or go to another GI or naturopath just dont settle go to a few if you have too.

good luck mum of 3
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