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Living with UC - flare up

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Ulcerative Colitis
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Posted 3/29/2011 6:34 PM (GMT 0)
I'm new to this website. I am in awe at how long some people have been in remission. It's amazing!

 

I am 26 years old and was diagnosed with UC in 2009. I began taking asacol 400 mg 3/ 3 x a day. My flare ups stopped for a while. At least a few months and would then come back. For a year I lived with pain in my abdomen. I don't think there was ever a day that I wasn't bloated. Sometimes I only had a bit of bloating and others it was unmanangable and my stomach would make the loudest noises. My GI said this was normal. I felt like he was not listening to me. This year I tried a new GI. In January he put me on my first round of prednisone 10 mg 4/ 4 x a day for a month, then slowly tapered off that the following month. He also upped my dose of asacol. I am now taking 400 mg 12/ 2 x a day.  The steriods were horrible! I had so many side affects and although my stomach felt better the rest of me was a mess. I was asked twice if I was pregnant and if I had been to the dentist because my face was so swollen. I gained 8 lbs in one month! I think the worst part was that I was so moody. I'm usually a very happy person and being so mean was hard on my husband too. I just could not control my emotions. 

 

Well, it is now the end of March and i'm having another flare up. I started feeling sick two weeks ago. I was cold, nauseated and sluggish for about a week and then last Thursday I started with the flare up. I have been having them since then. Its not as bad as some of the others I have had. I only feel intense pain when I have to go then the pain will leave for a while. It is usually hardest in the mornings, always has been. I have already started having headaches and am very tired. I also work full-time and have a very busy schedule and being sick is very draining. I am trying to manage the flare up on my own. I know if I call the doctor he will put me on steriods again. I will do that only as my last resort. I am not getting any better BUT I am not getting any worse. I have been eating fruits for breakfast and mostly brown rice with some meat for lunch and dinner. It has helped.

 

My doctor had told me to eat high fiber and low fat foods. I was doing good for a while but I have slowly stopped managing it. I really am ready to get on track and eat healthy. I just don't know what is healthy besides whole grains, fruits and veggies. I get bored eating the same meals. Does anyone have any suggestions?

Posted 3/29/2011 6:42 PM (GMT 0)
Hi and welcome!
I can't handle whole grains or any fruits or veggies unless they're well-cooked, when I'm flaring. So..... you might need to experiment to see what makes you feel better. We're all different.

When flaring I eat white breads and pastas, chicken, fish some beef, (tender, chewed well.....) nothing raw or gassy or fried. (Nothing "scratchy", for instance. ) But, as I said.... we're all different.

I do better with packaged fiber - Metamucil, etc - than fiber from foods; I think my teeth don't meet well enough to chew the food into non-scratchy bits of something. So when flaring I do smooth foods - and packaged fiber. (I take the fiber every day throughout.)

Have you tried the rectal meds? I've bargained my GI out of giving my pred several times in the few decades by suggesting I'd like to try steroid enemas for three week first.... and every time, they've helped me out of the flare.
Rowasa enemas are the gold standard... they are based on the same med as Asacol, so very safe, and a lot of folks on here have had wonderful luck with them.

I've also done well with probiotics.

Again, welcome!
Posted 3/29/2011 6:59 PM (GMT 0)
Hola & thanks!

Well I have noticed that some vegatables cause me to get gassy. I was eating them raw. I know I do good with low fat meats and poultry. Fish is good too. All of it has to be grilled or cooked in a pan with very little olive oil. If I eat anything fried i'm screwed. Iuse to be able to eat fried food every now and then but I made fried parrot bay shrimp and now i'm sick so I guess I can't have even a little anymore.

I have tried metamucil. I felt bloated. I could taste it too. The food tasted a bit chalky.

I have never tried rectal meds. I'm kinda scared to try it!! If it is easier on my body I would be willing to give it a shot. Is it something that has to be done daily?

Thank you for the tips.
Posted 3/29/2011 7:05 PM (GMT 0)
A food diary might be a good idea, because different foods affect us each differently.... you could better keep track of what bothers you..?

My son's GI also recommends Benefiber.

The rectal meds..... they come in little plastic bottles, you squirt them in at night when going to bed, and they just sort of... absorb while you're sleeping. It's a little weird at first, but I've become very accustomed to it.

You'll likely be able to have fried food again with no issue! - but the first goal would be to get solidly into remission. I find when I'm in remission I can eat about anything.... knowing that helps when I'm flaring and limited! :-)
Posted 3/29/2011 8:21 PM (GMT 0)
When I was in my flare, I also had terrible headaches. I think it was caused by one of two things:
- Anemia
- Dehydration

Maybe you could talk to your doctor about taking some iron pills and you might try drinking more water might.

Good luck.
Posted 3/29/2011 8:26 PM (GMT 0)
I like the food diary idea. It will probably help me get off the pounds I gained while on steriods!

I might give packaged fiber another try.

Hah, that is interesting. So does it take affect all at once or do you have to "go" all throughout the day?

Well I would love to eat french fries every now and then. Growing up potatoes were my favorite food. I hardly ever eat them. I get too bloated whenever I eat them. it doesn't matter how there prepared.

What is remission? Does that mean no pain at all? Or just not bleeding every day? Not being bloated and gassy?
Posted 3/29/2011 9:04 PM (GMT 0)
Food Diary is a good idea. Depending on how motivated you are, it can become quite an obsession. I use a popular web site and track my Food Consumption, H2O Consumption, GI Symptoms, Weight and so on.

Food does not have to be bland and boring. Try grilling a chicken breast with your favorite herbs (mine are basil, oregano, & Italian herbs), and adding it to lightly toasted Ezekiel bread.
I try to switch my foods up as often as possible. Grilled Steak & Rice w/ some steamed or grilled vegetables will always be my favorite. But I throw in Chicken, Turkey, and Fish in there too. I mix up different salt-free seasonings/herbs (Garlic and/or Onion Powder if not fresh, thyme, rosemary too) so the tastes are constantly changing and I don't get as bored. Mrs. Dash is a good Salternative. And there are tons of varieties.

Cheers
Posted 3/30/2011 1:23 PM (GMT 0)
Yes I was looking at free apps I could use on my phone to keep track. I know I won't be able to keep up with it on pen and paper.

I garden and I do use all my veggies and herbs but I get tired of eating just veggies. I LOVE chili but it doesn't love me. I have to find a way to love my food without spice. Herbs are a good substitute though...
Posted 3/30/2011 4:30 PM (GMT 0)
food log is a GREAT idea, helped me figure out what my body can handle and not handle. We are all quite differnt.

for me beans, cooked vegetables, bread, are all good comfort foods. when I was flaring low residue/low fiber diet helped immensely. Basically my "bad" list which I 100% try and stay away from is:

- High fat foods
- fried food - any, especially deep fried
- fast food
- insoluble fiber (like apple peel, cherries, dried fruit)
- dairy - especially milk, cream. light butter seems to be ok
- seeds, or nuts that are not chewed sufficiently
- mint
- alcohol - especially beer and wine. I'll do a shot of good liquor maybe 1/x month
- caffeine will trigger instant bowel movement, so I only do when I know I can eliminate

3mo ago I switched to a vegan/pescatarian diet and feel quite good

hope this helps you in figuring out your trigger foods. btw, a nutritionist that your GI office recommends(ie he/she understands UC) can help you learn of other foods to eat that are healthy. I did this years ago and it helped a lot.
Posted 3/30/2011 7:19 PM (GMT 0)
When it comes to food, what works for one may not work for another. Keep a food diary.
Posted 3/30/2011 8:38 PM (GMT 0)
When I am flaring I always stick with low residue food.  I don't even worry about fiber because too much fiber may get you to go to the bathroom more often.

What works for me is rice, potatoes, and pasta.  I stay away from tomatoes, any raw vegetables, all cruciferous vegetables (even cooked), and alcohol and coffee.  You can also try a liquid/heavy liquid diet for a few days to calm your bowels and let it rest. 

Good luck! I sent the cortizone enemas and Rowasa enemas if that works for you.

Posted 3/30/2011 9:58 PM (GMT 0)
Pedialtye, Tea, & Water. and Low Residue can be your best friend for a week. Drink at least 128oz of water a day. I take a Gallon Container of water (Think Milk Jug) with me everywhere.
Posted 3/30/2011 11:31 PM (GMT 0)
I wonder if your doctor would consider something like Entocort which, according to my understanding, is a steroid that releases only in your intestines so you don't have the systemic effects. I also strongly agree with the others about trying rectal meds such as the rowasa enemas or canasa suppositories.

good luck.

Posted 3/31/2011 2:00 PM (GMT 0)
Thanks for the ideas guys.

I usually eat a lot of brown rice and fruit when I have a flare up. I have to eat very bland food with little to no seasoning. My stomach gets very nauseated when i'm not feeling well. I'm not sure if that is a side affect from the UC or not. Since I was a child if I was cold, anxious or nervous I would throw up bile in the morning. I also throw up if i'm having intense pain from my UC. I guess I just have a weak stomach.

I am feeling much better. Just in time for a two day conference I have to attend. Yay!
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