Holiday food and colitis

I used to look forward to Thanksgiving and Christmas because of all the great food  my mom would make. But that was then and this is now—colitis rules my body and decides what I can eat.

Not being able to eat everything I want to eat has made me feel depressed and sometimes I avoid going to these food fests. Thankfully, family gatherings are mandatory and I would rather take a chance on the food rather than make my family feel slighted.

So instead of focusing on what I can’t eat, I try to focus on what I can eat. At Thanksgiving I was excited because I could eat turkey and mashed potatoes, without the gravy of course. I even made an awesome sandwich with my dinner roll, some turkey and mashed potatoes. I had to avoid any dishes like stuffing that contained onions, but I’m not a fan of stuffing anyway so that wasn’t a problem for me. For desert, I had small pieces of chocolate pie and cream cheese pie. I came away from the gathering without a stomach ache.

Now Christmas is coming up and I have to choose my food carefully again. My mom said she is having different types of soup. I can do soup as long as it isn’t spicy. I’m sure there will be other side dishes and deserts that I will have to choose wisely.

I’ve discovered since being diagnosed with ulcerative colitis that the one thing I have to avoid is stuffing myself. It has taken a lot of will power and lots of memories of having horrible stomach aches to convince me to not over eat.

The holidays can be difficult for those of us that have to watch what we eat, but with a little caution and discipline, the holidays can be a joyous time.

Merry Christmas and Happy New Year, Happy Holidays, Happy eating!

Colitis Chick

My mad colon

 

 

You have to manage your disease--now what?

After eleven years of doctor visits, medications, procedures and treatment, I have had it. I am so sick of having to go to regular doctor appointments or to a specialist, hoping for some miracle treatment or pill, and finding neither. All I am left with is profound frustration, anger and depression.

I keep hearing the same old line: "Your condition is chronic. You need to manage your condition." Well, that's easier said than done. I have been managing my condition or conditions for eleven years now and I'm failing. I feel like I am swimming in mud, trying my hardest to keep up with my exercises, eating habits, sleeping habits and overall mood. I've been told that having a positive mind helps with chronic conditions. Really? Like I never thought of that before.

Obviously, today is not one of my 'positive' days. I'm dealing with one of my headaches and neck pain, probably because I didn't sleep right last night. This is my private Hell. Anything I do to try and help my pain, fatigue or mood is a temporary fix, and when I say temporary, I mean maybe a couple of hours. As soon as I sit and work at my computer or go to sleep for the night, I have to start all over again. It's getting tired and old.

I wanted to give advice to people trying to manage a chronic disease, but ended up on a rant. And maybe that's my advice: Ranting can be a good thing. I already feel a tiny bit better.

When you want to scream, try smiling.

Colitis Chick

Coping with change

There’s the person I was and then there’s the person I’ve become. I went from being independent, active, determined and relatively healthy to becoming dependent, less active and unable to work, scared and somewhat bitter. For me, ulcerative colitis is more than just having diarrhea. UC zaps my energy and I feel sick all the time. Sometimes I think that maybe I didn’t change that much after all because I am still determined to fight this illness. If I wasn’t already a determined person, I think I would have given up long ago. I am battling depression and close to losing the fight. It’s not a fun place to be and determination is my strongest ally.

I think people learn to adapt to their situation and that’s what makes humans survivors. I have survived eleven years of this hell. Some of the ways I cope are by writing and reading, which are great escapes from reality. I try to spend time with friends and family—I’ve succeeded in the family part of this, but am failing in the friends’ part, unless you count the Internet as spending time with friends. I suppose that’s better than nothing. The truth is I have retreated from social situations like my writer’s group. I still belong to the group, but I don’t attend the meetings anymore, mainly because I am just too tired and I have to be realistic about what I am able to do in a day. I have to make sacrifices.

It’s just hard sometimes to think that I used to be so active and happy doing something I loved and now I struggle through each day. Sometimes I feel like I am falling into a black hole or just barely keeping my head out of the water. Overwhelmed is the best way to describe this feeling.

Change is never easy. I have to put that person I was away in a drawer somewhere and concentrate on the person I am now, to focus on the positives in my life—a caring family, devoted husband, my writing, my dogs and try to accept what is and forget what was. I have evolved even if it’s not the evolution I envisioned or wanted.

I see only one option if I am to live a somewhat normal life: accept what is.

Colitis Chick

My Mad Colon

Chronic fatigue and colitis

What I don’t understand is I feel tired all the time even when it seems like I am in remission, but I’m not even sure I know when I’m in remission. I thought a flare = blood in the stool, but that’s not always the case with me. The other thing is, I don’t have a severe case of colitis. Mine is in the lower part of my colon and compared to other colitis sufferers, my case is mild. So why am I tired all the time? I’m not anemic. It could be because people with colitis don’t absorb nutrients and that could make me tired. But all my blood tests are normal and my doctor checked my thyroid and that is normal. Also, my hormones are normal. So what’s up with me?

I feel so frustrated because I feel like crap and the doctors can’t find anything really serious, but I’m scared. Who wants to feel tired and crappy all the time? I wonder if it’s a combination of things that are making me feel so sick—colitis, arthritis and moderate allergies (that cause chronic sinusitis) can all cause a person to feel crappy. It’s to the point where I can’t work anymore and I HATE that. I’m even having some mental problems that are freaking me out. Am I depressed? I have no idea. I suppose I could be depressed. I have good cause to be depressed having to deal with not one, but several medical conditions.

I don’t think I eat well either. I keep reading that a person should eat at least nine servings of vegetables a day. Nine? I don’t even eat that much in a day. How am I supposed to get in nine servings of vegetables? Most days I don’t want to eat much at all. Is that the same for most colitis sufferers? I’m trying to make my lunch more nutritional. I told my doctor what I was eating for lunch—crackers with cream cheese and her response was that it wasn’t very nutritional and was more like a snack rather than a meal. Hmm. She’s probably right. I’m trying to make improvements to my lunch by adding some tuna salad instead of cream cheese to the crackers. Crackers feel better on my tummy. The thought of eating nine servings of anything a day makes me feel queasy.

What do people with colitis like to eat?

Colitis Chick

My mad and tired colon

 

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Managing Colitis

Sorry I haven't posted in a while. I just got fed up with dealing with being sick all the time. I had a hard time finding the right treatment for my colitis and I am still not sure about the current treatment I am on.

The good news is that after my last colonoscopy in February (I think) the doctor confirmed that I only have colitis in the lower part of my colon. Speaking of colonoscopies--am I the only one that can't finish the prep drink? This is the second time that I couldn't finish it all. I even started drinking it early and sipped ginger ale in between to keep from being bloated. The ginger ale did help and I recommend that as a way to get through the prep. I'm a small person and I don't eat or drink  much anyway so why do I have to suffer and drink all of that? They should do the doses by weight. Grrr.

Anyway, back on topic. I told my doctor that I had a bad experience with Asacol so what does he do? He puts me on Sulphasalazine, which is known to had worse side effects than Asacol. And guess what? I took my first dose on Christmas Eve and it triggered a major migraine. I spent Christmas Eve alone in bed (not really alone--my faithful dog was at my side) and missed my family gathering. So then I said I would try Asacol again. I already have a problem with headaches and Asacol made them worse. So, on to Plan C. Since I have colitis in the lower part of my colon, the doctor said I could get by with a rectal treatment. Now I was told that I was being given suppositories so I imagined a small gel-like pill that I would have to insert, but no, it's more like an enema. I have to do this every night. It's not too bad, but I think it's giving me diarrhea so I have to talk with my doctor.

Has anyone read the side effects for these colitis treatments? One of the most common side effects is colitis. WTF? I give up.