I've been in remission for one year. It's hard to say exactly when the anniversary is because how can you tell when you are in remission for sure. But I know it was before Thanksgiving last year that I last had any UC symptoms.
This is the longest I have EVER gone without a flare-up since my first one approximately eight years ago.
I feel like I am holding my breath waiting for it to come back.
I haven't been on any medications since July. I hope that I will be able to celebrate being symptom and medication free for a whole year this summer.
Time is a funny thing. The same amount of time can seem interminably long or insanely short. Seconds pass by without any realization all the time, but can crawl by in serious situations. It is almost like time cannot be measured by any type of units, only by our experiences.
So. I have a year. It seems like such a long time ago since I was sick, and yet, not long enough to forget. Every single day, I pray and thank God that I am healthy and feeling well. Every single day.
Every Thanksgiving my family goes around the table and we each say one thing we are thankful for. A couple years ago, I was thankful for my medication that was helping my symptoms to ease.
Next week, I'll tell them I'm thankful for a year. A whole year in which I celebrated every holiday, every birthday, every wonderful regular moment pain free. And even if tomorrow I am sick again, I'll still have this year to remember.
This is a year to be thankful for indeed.
Happy Thanksgiving! May you all find your reasons to be grateful!
I don't watch very much television, but I have still seen many commercials like the one below.
When I went to YouTube to find one of these commercials to post here, I found dozens of similar commercials for the class action lawsuit against Accutane. All of these commercials clearly state that Accutane causes Ulcerative Colitis and Chrohn's Disease. Accutane has been recalled.
I never took Accutane (it's a medicine to treat severe acne). But I still find this very interesting because it is the first time I have ever heard anyone state a cause for Ulcerative Colitis. It's always just been a world of unknowns. Now I realize these commercials are lawyers saying that it is the cause, and not doctors, but I suspect that they must have a significant amount of evidence if they are going to take on the pharmaceutical company.
It just makes me wonder--was there a prescription I took that caused my UC?
I'm still around. Still in remission too. I've been reading blogs still, but haven't commented or written much because I usually have the baby in my arms and can't type. In fact I'm writing this now with one finger and it is frustratingly slow. My 3 year old starts preschool soon so I may get more time for my blog in a couple weeks.
Earlier this month, my father-in-law had his retina detach. I didn't know that could even happen. He underwent surgery and in just a few hours it was corrected, although the recovery time will be a few months.
This reminded me of my grandfather. He had an eye lens transplant last year to correct cataracts.
Isn't this an amazing age we live in? I am astounded that things so sensitive and delicate like an eye can be helped by modern medicine.
I thank God that I live in this time. Can you imagine having Ulcerative Colitis before there were toilets? Certainly, toilets are better than a hole in the ground.
I not only have the luxury of flushing toilets, but also medicine that helps me keep my UC under control.
And colonoscopies! Not that I am a big fan of those, but I am thankful they are around. I'm really grateful they were able to diagnose me, so that I wasn't just some crazy person with diarrhea.
If you want to know about some other advances related to UC, check out the free webinar that the Crohn's and Colitis Foundation of America is doing on October 6th by going here.
I haven't been online lately because I had my baby. I am exhausted, but doing well, still in remission. In fact, I am doing so much better with my recovery this time than I did with my first son and I believe the difference is because I was in a flare-up then and I am in remission this time.
After going through labor again, I still think that the pain I felt with my Ulcerative Colitis is worse than labor. Of course, I did get an epidural towards the end. Hmmm... do you think an epidural could be used for bad flare-ups?
In other UC news, I have stopped all of my medication. Thank you to everyone who weighed in with advice about continuing the medication while breastfeeding. For those of you who don't know, I have received conflicting advice from my doctors about whether it is safe to be on the medication while breastfeeding. Ultimately, since I was doing so well in remission anyway to just go ahead and stop and then if I start getting sick again, I could start up again. And hopefully if that happens, it will be after my baby is quite a bit older and the risk of allergic reaction is lower. I was on the medication when I breastfed my older son and he had no problems.
This isn't the first time I have stopped the medication. The last time I stopped, I went 11 blissful months with no symptoms. I am hoping to go even longer this time. I wonder if it might actually be beneficial to take a break from the medicine. I'm not a doctor or a scientist, but I wonder if it could make it so I don't build up an immunity to the medicine. I know with some UC cases, after a while the medicine just becomes ineffective. I don't know...what do you think?
It's an attempt to minimize the stress in my life.
My husband and I thought taking care of a toddler and a newborn would be enough for me to handle without workplace pressures. We're trying to keep my stress low to avoid a flare-up.
So I quit. Problem is now our finances are a lot tighter...which ironically is stressful. I'm trying not to think about it.
So instead, here are some memories of what it was like working during a period of time (we're talking several years) when I had a flare-up.
It would be nice to think if you were not feeling well that you could just call in sick. But when you don't feel well pretty much every day, sometimes you just have to go to work. My co-workers all knew I was sick, pretty much anyone that ever used the bathroom at my work knew I was sick. But my customers didn't.
In my job, I had my own office where I would meet with my customers. Unfortunately, sometimes I would really, really have to use the bathroom while I was meeting with them. I always gave them some excuse for why I had to leave. I would smile and say, "Oh, I need to go make some copies, please excuse me a moment." And then when I was two feet out the door, my smile would disappear and I would make a dash for the bathroom.
Sometimes when I got back, I would immediately feel that special feeling that tells you you just aren't quite done yet. "Whoops! I think I left one of the pages in the copy machine, I'll be right back!" Another sprint down the hall.
And if, later during our meeting, another urgent feeling would strike then, "My pen seems to be dying. I'm so sorry. Let me just run to our supply room." (This once back-fired on me when one of my clients once whipped out a pen. "Hee, hee...Gee, thanks...Did I say I needed a pen? I meant a...pencil..." If anything my Ulcerative Colitis kept my mental faculties sharp.)
Were my customers on to me? I don't know. How long does it take to make photo copies? (Especially long since not only did I have to use the bathroom but then I also had to make said photo copies). If anyone suspected anything, they kindly didn't say so.
I really don't like lying.
But I wonder how many of my clients would have preferred hearing, "I've got the runs. I know I just barely used the bathroom, but I've got to go again and if I don't go right now, you'll probably see it running down my legs in just a few seconds."
Later, my office was moved to a floor without a bathroom. How convenient. Using the bathroom, which I did probably 20 times a day, then involved running down a flight of stairs. Or should I say jumping down a flight of stairs.
Now that I've quit, I'm going to have to come up with a new exercise regiment.
This past weekend my family and some of my extended family all drove a few hours away to go to the big zoo in our state. Now that I am just 8 weeks from my due date and getting quite big, I waddle everywhere. Even though I still have two months to go, I have already passed the size I was when my first son was born. I think the difference is I am not in a flare this time. I definately have a lot more energy this time around even though I am busy keeping up with a toddler.
The zoo trip was a lot of fun. By the end of the day, I was pretty stiff from having walked so much with the extra weight, but it hadn't effected the trip at all.
Being there brought back memories from my last trip to that zoo. It was several years ago in the B.C. period (before children).
That trip it was just my husband and I, escaping for the weekend for some couple time. It was miserable. I was miserable. I remember being at the zoo and visiting the bathroom more than the exhibits. I could only walk short distances before I would have to curl up with intense cramping. I would sit on the ground and wait for the pain to subside before going on. We didn't dare venture too far past the public restrooms. And even when we did go to look at things, I had so little energy my husband had to pull me along the walks. What was supposed to be a romantic weekend was. . . not. We took a few pictures on the trips and the forced smile on my face says everything. It was horrible. Thank goodness for a wonderful husband that has endured so much and still stayed by my side.
I will never be at the place mentally or physically again though. It doesn't matter if my UC flares up again, I will NEVER be in the place I was then because I have something I didn't have then--a diagnosis.
I was actually on medication when we went to the zoo all those years back. I was on sedatives. After seeing multiple doctors, they all had said that intense anxiety was the cause of my "stomache ailments". But, I never felt any better. No matter how many sedatives I took or how many hours I spent relaxing/meditating, trying to clear my life of stress, I never felt better. It wasn't until years later when I had my first colonoscopy (something I had unfortunately purposely avoided previously), was told I had UC, and received the proper medication that I felt better. And boy, did I ever feel better! It wan't over night, in fact it was months before I felt normal again (it has taken that long for each subsequent flare as well), but I could tell things were improving after just a few weeks.
But now I have knowledge. I know what it is that is wrong and what my options are to treat it. Knowledge really is power. So even if I have another bad flare up (still in remission!), it will never be as bad as it was then because I know now what is wrong. And I know I'm not crazy.
And in the words of G.I. Joe, "Now you know, and knowing is half the battle."
That's what a distant relative said to me the day my father returned from the hospital after having two stints surgically put in following a heart attack.
The relative, of course, was referring to my genetic health history (at least I hope so, otherwise, that's quite rude!).
There are some health issues that run in my family. My father has heart disease and has already suffered a heart attack. A few months prior, his brother, who is in his late forties, also had a heart attack. My grandfather died from heart disease.
My mother is in remission from breast cancer. She's had a mastectomy. I have three aunts that have also had breast cancer. My mother was told by her doctor that the cancer she has was not caused by lifestyle or diet, but by genetic predisposition.
High blood pressure and diabetes also run in my family.
So, yeah... Outlook not looking really rosy.
Then, for me, there's the UC twist. Forget that I have a disease that may or may not have genetic involvement but when I got my diagnosis, I was also told "There is a significantly increased risk of colorectal cancer in patients with ulcerative colitis." And while I am not sure if these numbers are accurate my gastro. doc. said my risk is 10% above the general population for colon cancer and increases by 1% each year I have UC.
So when one is "genetically screwed", what are they to do?
Here's what I think my options are:
1. Eat, drink, and be merry, for tomorrow we die! This approach is basically assume that my future is bleak and so I might as well make the most of my life now. Today is all about having fun and worrying about the consequences later. Eat what you want, when you want it. Take the big risks now. Forget about the check-ups, have to squeeze in the living while you can.
2. Fight for your right to party. This approach is to take things in stride. Sure, we can live a little but there's also going to have to be sacrifices. You want to enjoy that hot dog? That's fine, but you better make up for it by eating your veggies and going on a bike ride. This option takes into consideration my potential health risks, but let's me do the things I want to as long as I am making efforts (through diet and exercise) to minimize my risks. I want to be around for a long time, but I want to be happy and enjoying life while I have it.
3. Ignorance is bliss. This approach is to basically plug my ears and go "Na-na-na-na" whenever someone talks about my family's health history. It ignores my family's health history and basically says to make no changes to my lifestyle. Live life as I would if I didn't know I had an increased risk for illness.
4. Be institutionalized. This approach gives in to the hysteria that basically I am doomed. I spend all my time worrying about the future and obsessing over little health hiccups, convincing myself it is the beginning of the end. Ultimately, this option ends with a peaceful rest at a mental institution.
5. Convert to "wholeness". This approach treats life style as a religion. What I eat, how much I exercise is strict and studied. Most of my time will be spent making sure I consume only the healthiest things and exercising. Good-bye sugar, fat and nitrates. Green smoothies become like the holy grail. Strict rule-following is mandatory.
What option did I pick for myself? I picked number 2. I have the great advantage of knowing there is a bit more risk to my health, but I also know there are no guarantees. My mother was told there was nothing she could have done to prevent her breast cancer. I could obsess and worry about it, but it won't guarantee anything. A good diet and exercise are the only things shown to reduce the risk of cancer and heart disease, but even then there's no guarantee. On the flip side, people who do everything wrong and have a genetic disposition for a disease still may not end up with it.
I'm going to make careful and balanced choices. For some people, going the whole foods route is a perfect match for them. It's not for me. At least not right now. I'm trying to exercise regularly and include more fruits and vegetables in my diet. I'm also making great efforts on how I handle my stress. But if I am at a summer barbecue and they are serving hot dogs, (they have nitrates which have been linked inconclusively to colon cancer), I'm going to eat one. I'm not going to deprive myself of things I would like.
Why? Because I don't just want to live, I want to live now.
I haven't posted for a while because I've been...stressed. Really stressed. I've got problems at work, with finances, in my family, with friends, in my personal life...and I've been worrying a lot about a lot of other things too. The fact that I'm stressed and worried about things also worries me because I'm terrified it will trigger another flare.
I'm kind of good at worrying. It's a talent. I can see scenarios (negative ones) that others just couldn't fathom. It's not just recently either. My mom tells me that even in grade school I was always worried about something and would always have this scrunched up little face. It's part of my personality.
But, I've spent too many days with my life filled with worry. It's sucking the joy out of the rich blessings I have. So, I've been reading a book by Stephen R. Covey called How to Stop Worrying, and Start Living. I haven't finished it yet, but I've really enjoyed it so far.
He suggests some exercises to cope with worrying and I've been trying them and I do think they are helping, but I am going to need practice! Here is my own variation of some of his steps to take when you are worried.
1. Write down what you specifically are worried about. This might seem unnecessary, but I discovered that once I wrote it down, it seemed more manageable.
2. Ask yourself, "What is the worst thing that could happen." Then, write down if that happened what the result would be.
3. Come to terms with the "worst thing" happening. How would your life change? What would happen? Write your answers down. A lot of things I was worrying about relate to my family's finances. When I asked what was the worst that could happen, I thought of our house being foreclosed on and having to declare bankruptcy. If that happened, we would probably rent a townhouse. The rent for even a really nice townhouse around here would be less than our house payment. When I thought about this, I discovered even though it wasn't the ideal, it would be alright. And if that happened, I would feel a lot more relaxed because more of our monthly income would be freed up for other things. (So, what was the point of worrying?)
4. (I added this step myself) Ask yourself, "What is the best thing that could happen." So many times I focus on the negative things, but it is just as likely that something good will happen as something bad. It can't hurt to be positive! Write your answers down.
Just those four steps sure have helped already. And so far, I haven't had any hint of any bowel issues. Since stress seems to be a trigger for a lot of us, I challenge you to try these steps for something you are worrying about and see if it helps you.
In other news:
We are having another boy!
Yeah! We are really excited, although I was certain I was having a girl this time. My husband says I jinxed myself.
Also, I am only taking Asacol right now and just found out you can't take that while breastfeeding. I'm torn. I really believe that breastfeeding is super important, but all of the doctors are saying to stay on the medicine and just bottle feed. This is one of the multiple things I have been stressing about. I am actually leaning towards ignoring the doctor's advice and getting completely off medications. A sacrifice for my child. Scary. If my UC flared and got bad enough, I would probably have to stop breastfeeding and get back on the meds. I'm hoping that if I can relax and reduce my worries and watch what I eat that I will be okay. Hard to do with a new infant. Still have about 4 months before the decision has to be made.
In closing, this song was running through my head the whole time I was writing this post probably because of the line about worrying being like trying to solve an algebra problem by chewing bubble gum. Remember to wear sunscreen.
The other day while I was playing cars with my son, my mind started wandering. Something it often does when we play cars since we only play that about a million times a day.
And a question came to my mind.
If you could wish for something that would change your life, what would you wish for?
And I thought, "Easy. I'd wish I didn't have Ulcerative Colitis."
And a moment passed.
And then I started wondering if that is what I'd really wish for. After all, I am in remission right now. Right now, besides the 10 pills I take each day, the illness has little impact on my life and as I wrote in my last post I don't really remember the pain.
Now if you had asked me during some of those flares what I would have wished for, no doubt I would have said to get rid of the UC. But now having had the experience that it is a problem that can be managed and dealt with, would I really waste a wish on it? I know that my experience is not the same as others with the illness and that for many their UC is a million times worse. My heart goes out to them since I have only had a taste of the pain and misery they experience.
But for me, I wondered if having UC was really all that bad. I mean if you HAD to have an illness, was it so bad? I don't know. I know that I at least have full use of my mind and I most likely am not going to die from it. There are periods of pain and seclusion, but also moments of real life. Sure, it's an embarrassing illness, but it keeps me humble, right? For all I know, if I didn't have UC my head would be so big I'd be floating.
So if I didn't wish away the UC, what would I wish for? Well, I'd wish to be happy or healthy. But those things are relative. I mean you could argue that I already am happy and healthy, even during flare ups.
Then, I'd wish my mother didn't have breast cancer and didn't have to have a masectomy. But then again, she's had such personal growth and has gained such wisdom from that experience. Would I deprive her of that for my own selfishness? I'd wish my father didn't have heart disease and hadn't had a heart attack. But since his heart attack he has cut back on work, spent more time with family, started eating better and exercising. If it wasn't for the heart attack, would these positive changes have happened?
I'd wish to be financially secure or for my house to be paid off. But honestly, if my house was paid off, I'd probably just go get a bigger house and as for the financial security--I can pay my bills, I have enough to eat and a safe home--isn't that financial security?
I'd wish my grandfather hadn't died. But, my grandmother remarried a wonderful man, whom she loves. I'm not willing to say one marriage was better than the other.
I could wish for world peace, but what does that even mean? Do I want to live in a world where there are no struggles? If anything I have learned that we are made better in the refiners fire. Our trials can lead to our greatest strengths.
Would I risk wishing something away, thinking I'd be better without, when in reality it could have been my greatest blessing? A lost job could lead to a better job. A broken relationship could open the doors for a soul mate. Things are not always as they appear.
And then suddenly, my thoughts were interrupted because my son apparently noticed I wasn't moving my matchbox car.
So my final thought is that wishes are hard stuff...best left for the professionals in fairy tales. I don't need any wishes, my life is perfect just the way it is. Especially with it's imperfections.
Physical pain is a funny thing. Unlike emotional pain, it's hard to hold on to. Once the pain stops it is hard to recreate...to remember. I'm in remission now, and thinking of the pain associated with my UC I wonder if it was ever really that bad. I feel great now and I can't feel the pain.
I remember when I was in a really bad flare up, before I was even diagnosed with UC, that I actually said to my husband that I wished I could die. I wasn't suicidal, but I do remember thinking I couldn't go on feeling that much pain. I remember saying that... I remember where the pain was and generally how it felt... But I don't remember the pain. Not like the pain I felt when I found out my father had a heart attack or that my mother had breast cancer or when a friend made a particularly cutting remark. Those pains I can summon back and feel it almost as intensely as the moments in which they first happened.
But not the physical pain...
It's like when I gave birth to my son. A few hours after the delivery someone asked me if there was anything I would have done differently and I said, "Get the epidural sooner." I remember I was in a lot of pain but again, now that some time has passed, I don't remember THE pain. (Someone said that was Mother Nature's way of making sure the Earth stayed populated.) :)
I don't know why this is. I guess I don't really care. It's a blessing, right? Then again, maybe I'm just a weirdo with some psychological defect and everyone else can remember the pain.