Well, I think its about time for a general update. I am just finished packing for the cruise and I still cant believe I am going. I also just had my doctors appointment this week for a follow up from starting Humira. It is now testing time. I received the approval to start tapering down (once again) from the steroids. It probably isn’t the best time to test to see if the Humira is working, because I am going out of the country. 20ML of prednisone has always been the kiss of death for me. As soon as I hit 20ML my body hates me for it and soon enough, I am back up to 40ML. I am really hoping this time is different since I am on Humira. However, my doctor informed me that if my symptoms do return this time, she is going to send me to the big hospital in Chicago for more tests. It can go both ways, I can only hope I can get off these horrible steroids once and for all! I do believe if my hump between my shoulder blades (due to being on prednisone) gets any larger, I will have to start giving rides.


On another note, my schedule at work recently changed. I had the same set schedule for two years and we had to change it up some. I work now three days a week 12 1/2 hour shifts. Still full time and one of them is a graveyard shift. I enjoy having four days off a week and with my health issues it is nice to have a few extra days to relax! I am trying to monitor my stress levels, because as you IBD people know, stress can cause a flare. Between planning vacation and the changes at work its easy to feel a little overwhelmed. Not to mention the pressure to have the Humira kick in and work its magic.

How long did it take you to get off of prednisone? What side effects did you have while taking it?

Did you used to enjoy dining out?

Many people enjoy the experience of dining out. Not only do you not have to make the food yourself, but you also get to try new food and get away from the regular rountine for a while. However, if you have Ulcerative Colitis or Crohns going out to dinner can be challenging.

Since my diagnosis when the subject comes up of going out to dinner I always get a little nervous. Why? Well, theres not much food I can eat. Also, the food I can eat I have already had over and over again at other restaurants and they are beginning to taste the same. For example, I usually have to eat either salmon or grilled chicken. Those are my safe foods when I go to restaurants. How much salmon and grilled chicken can you eat though? It’s good, but not something I need to dine out for. When someone suggest a restaurant, I always look up the menu to make sure I will be able to eat something.

Then, say your at the restaurant and your ordering your meal. “Can I please have the Salmon with NOTHING on it, with a side of plain mashed potatoes?” The waiter writes down your order and then informs you “You also get a side of corn is that okay?” ( um not really because I can’t digest it..) So I politely reply with “No thank you, can I just have another side of mashed potatoes?”

If I am going to spend money on a meal I want to make sure I can eat it. Then it happens… The food comes out and they mess up the picky order you just put in. This happens 90% of the time. I usually become furious, because I am already frustrated I can’t eat the corn that I love so much, but then you serve it to me anyway. It’s not like I enjoy making a difficult order. Restaurants need to be more careful on serving food that the customer specifically did not order. I could be allergic who knows? I calmy send the food back and ask for it to be fixed.

Another reason why dining out is just not what it used to be is now you have to worry about the bathrooms. Is this food going to make me sick? Do they have clean bathrooms at this place? Should I sit at the end of the table just in case I have to leave quickly? Is the restaurant close enough to home?

Eatting out was always fun for me, but now it just comes with to much stress than what it’s worth.

How do you choose a restaurant? Do you still enjoy eatting out?

Finding alternative foods

If you have Ulcerative Colitis, or Crohns you are well aware that food has a lot to do with our disease. Someone with crohns may be able to eat a nice deep dish slice of pizza, while perhaps someone with Ulcerative Colitis can not. Unfortunately, you have to do a lot of experimenting.

I am still on a high dose of prednisone, so I am tolerating food a little easier than I normally would. I am also still new to all of this and I am still trying different foods that I am unsure of. When I was first diagnosed with my disease I was very unsure as to what I would be able to eat. I went from eatting and drinking whatever I want, to having a very restricted diet. At that point I did not care and still don’t. As long as I feel good I could care less how boring the food gets. However, the best thing you can do for yourself is find alternative foods, that way you don’t get as bored with the same foods. I have also been buying a lot of gluten free food. It really doesn’t taste any different! The following is food that does NOT work for me:

  • Fried greasy foods
  • Rich creamy foods (like pasta)
  • Beef
  • Tuna
  • Tomatoes (tomatoe pastes)
  • Vegetables
  • Ice cream
  • Fruits with skins
  • Hot spicy foods
  • High fiber foods
  • Nuts
  • Pizza
  • Anything with seads
  • Anything with skins on it (potato skins)
  • Eggs (but egg whites are okay)
  • Salty foods
  • Donuts
  • Cake

The list may seem long, but I have found a lot of alternatives. The following are foods that have been working for me:

  • Salmon
  • Grilled chicken
  • Ham
  • Flour Tortilla wraps
  • Gluten free breaded chicken
  • Cheese (to a certain extent)
  • Waffels
  • Plain yogurt
  • Penut butter crackers
  • Banana bread
  • Plan chips
  • Peaches
  • Sherbet
  • Mashed potatoes
  • Hummis
  • Plain rice
  • Lobster
  • White bread
  • Apple sauce

I’m sure I’m missing some things and like I said, each person is different. I have also completely given up caffine. No pop, coffee or anything. I’ve been sticking to water and Powerade. As many of you know, if you are unsure about trying a certain food and you end up going for it; you will soon find out if it works for you or not! Many people also make a food diary. So far, I don’t need a food diary to remember if a certain food worked for me or not, because I will remember the pain I was in for trying the damn food.

What food restrictions do you have? Is there some foods that work for you some of the time and other times it doesn’t? 

Preparing for vacation

Alright, it’s about time for a vacation! It’s been two years since I have taken off any work and have enjoyed a get away. In a few weeks I will be on my first cruise, on my way to Haiti, Jamacia, and Mexico.

I have never been on a cruise, so im a little apprehensive if my body will let me enjoy it! Also, being recently diagnosed with Ulcerative Colitis I am also nervous if my body will ever let me enjoy anything. I bought a “Sea Band” and motion sickness gum. So, hopefully I don’t get sick in that way. I also have all my medicine ready to go. I have plenty for the trip and turns out I don’t have to take my Humria with me, because I will inject just two days before the trip. There’s one less hassel I don’t have to worry about.

I couldn’t be more excited for my boyfriend and I just to get away, but I have to admit I am completely scared. I am once again attempting to taper off my steroids, so what if I get sick while on vacation? Every other time I have tried this, I have failed. Also, I am lacking a lot of energy these past few months, so what if I don’t have the strength I desire? I would be lieing if I said I wasn’t nervous about the food and how my stomach will react. What if I need to go to the hospital? Out of the country hospitals are not ideal. I guess I would feel better about the trip if I felt like I had a better handle on my disease.

I finally went clothes shopping for the trip this evening and I was putting it off for some time now. With all the weight I have gained, moon face, and buffalo hump I was less than excited. I did my best and just got the next size up. Who cares? I rather be comfy than try to squeeze in a size that would make me look bigger than I am. As I was trying things on I was drentched in sweat. Another lovely side effect to the steroids. I also tried to cut out my face in the mirror and just look at how my body looked in the clothes. I can’t face myself sometimes and get to upset with how my face looks. Pitiful? Maybe. I realize I did not ask to get sick. I also did not ask for the medicine to have such horrible side effects. I know it’s not my fault that I am less than confident with myself. I have to keep in mind that my health comes first and if I look a little different then so be it. I did end up getting what I needed, but I feel worse than I did before. The cruise will be great and I know I will have a wonderful time. I just have to make sure I do the following:

  • Drink out of my water bottles
  • Do not eat off the ship
  • Take my medicine
  • Do not eat something that is not part of my diet
  • If I’m to tired, then I wont push myself
  • See the doctor on the boat if I get sick
  • Sanitize everything
  • Get plenty of rest
  • Wear a lot of sun block, because prednisone makes you burn!
  • Keep a look out for the nearest bathroom
  • Relax it’s VACATION!

Is there a miracle drug out there?

Many people that suffer from IBD have a whole medication list to keep up with. Mine is still constantly changing and I hope I can find the right medicine for me soon.

When I was first diagnoised with Ulcerative Colitis my doctor put me on the wonderful steroid called prednisone 40ML. She also prescribed me Lialda. The prednisone made me feel so much better, but I had no idea how hard it would be to get off it. I attempted to taper down and got so sick when I reached 20ML. My doctor then put me back up to 30ML and prescibed me Azathioprine (Imuran) as well. Along with that I was prescibed a nightly enema. Ah the joy. After following these instructions for a few weeks and having blood tests every week, I was beginning to be a little on edge. I started to gain weight, because of the prednisone. I also formed a “moon face”  and a “buffalo hump”. On top of that I formed stretch marks and the hot flashes and mood swings were through the roof. I look horrible and I feel horrible about myself. All due to a little drug called prednisone. I also began to have a preference of phlebotomists, as some are more cautious than others..

The only thing prednisone does do right is help the inflammation. It is almost not even worth it and I have been begging my doctor to take me off. My most recent doctors appointment, she put me back up to 40ML of the damn prednisone. Apparently, my symptoms are still not where they should be. I almost cried in front of my doctor, as I feel like I am going in the wrong direction. I just want to get off these steroids! Also, the Azathioprine was going to cause me liver failure according to the blood tests. So, I was taken off the Azathioprine and started Humira! For the first time since I was diagnoised with this disease I felt like I had the proper tools to succeed with this drug. Not only did I receive plenty of information sent to me, I received calls from nurses to check on me. They also sent me a sharps container, calendar, journey journal, practice pen and booklets of information. They also have a nurse who specializes in Humira, come to your home to help you with your first four injections.

Humira stays in the fridge and you take it out a hour or so before your ready for your dose. The shot itself hurts like hell. It is the most painful shot I have recieved. It’s a mix between a pinch, a sting, pulling a charlie horse and someone burning you. Luckily the pain doesn’t last longer than ten seconds.You must keep the pen still in your skin for ten seconds. There is a little window on the pen where you see your medicine being injected. When your all done, the little window turns yellow. Your first dose you do four shots. Either on your stomach or thighs. Two weeks later, you do two shots and every other week you just do one. Unless your doctor prescribes you differently.

I am still on the prednisone until the Humira kicks in. I have my two injections this Thursday, so hopefully I can start to see improvements. I have been on a high dose of prednisone since January and it has really effected me. I am staying hopeful and really hope Humira works for me so I can balance this better. If this does work I would only be on Lialda, and Humira. Heres to hoping!

Don’t be your worst enemy

I would like to think that I am pretty easy going, and can go with the flow. However, I soon realized what little control I have over my disease and if I can accept it. I have learned different ways to cope with my illness, but still to this day I struggle and get mad at myself for not being able to control what is happening to me. How could I possibly get mad at myself for something I have no control over? Well, easy. I want control over my body! I find myself getting upset when I learn I can not do everything I used to be able to do.

Many days, the fatigue is so powerful I find myself having to take a nap at some point during the day. Or, just doing simple tasks around my apartment has become very challenging for me. Doing laundry for example, has become a day event. I do have to go up and down stairs to get to the laundry room, but I should not be worn out all day from it. Also, cleaning has to now be separated into days. I know some of you are thinking why on earth does this woman strive to clean everything in one day? Well, because I enjoy having a clean home and I take pride on always having my apartment look and feel good.

My doctor explained to me that my body is constantly fighting against itself and of course, I am going to be tired. If I use that extra effort trying to get everything done in one day, then I can make myself pretty sick. I am sure many of you are aware of “The Spoon Theory”. If you are not aware of it, I highly suggest you read it. It is for anyone with an invisible illness, and if you do not have an invisible illness, it can help you understand it a little better. Here is the link: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I also have to keep in mind that I am on a lot of medication, and with it constantly changing the way it is it can cause a lot of fatigue. Since I am still some what used to this disease, learning all this new information is exhausting. In time, hopefully the tiredness gets better and if it doesn’t then I will have to keep on going.

Another part of having no control, is of course the flare ups. I have been on a pretty strict diet, and have not had to many flare ups. Although, the third time I attempted to taper off the prednisone I got really sick. All of my symptoms came raging back, just like before I was even diagnosed with Ulcerative Colitis. I was very upset and of course called the doctor right away. They ended up putting me on a higher dose of the steroids and added a new medication to the list. I almost could have cried, why couldn’t I just take medication and live my life like I used to? Why cant I have control over how I feel if I am doing everything as advised?  I eat foods that wont irritate me, I gave up all soda products, I get plenty of rest, I take my medicine, I try to stay “stress free” and I do all of the doctors orders. Yet, I still struggle and I never know when I will have a flare.

When I do have a flare up, I do not feel comfortable leaving my home. I can not eat, and I can not help but hear my doctors voice in the back of my head saying “If you have this many bowel movements a day you must go to the hospital!” Great now I am counting! As if there wasn’t anything more I wanted to do, than count how many time I have been to the bathroom today.

When I say “Don’t be your worst enemy” I mean don’t fight yourself, and take care of YOU! If you are too tired to go out with friends, then stay home. Or, if you are to tired to clean the house then wait another day, tomorrow may be better. If you like setting goals for yourself like I do. Instead of saying  “I am going to get all my laundry done today, and then go grocery shopping tonight”. Try, ” By next week I want to have my laundry done and at some point I have to go grocery shopping”. This way, you don’t feel bad about not getting everything done all at once. The best thing you can do is accept that you have no control over this and it is it okay to put yourself first. If you don’t listen to your better instinct, you can get sick. It is okay to not feel good and to be frustrated with this disease. Whoever said having IBD was something to be happy about?

“Oh, it’s like IBS right?”

One of my biggest challenges I have faced since I was diagnosed with this disease, is trying to explain to other people what my disease is. Not only what it is, but also what I am now limited too. I wish it was “like” IBS, but unfortunately my colon hates me and does not recognize my immune system, so it sends cells and proteins that make up the immune system to protect you from infection. In people with IBD, however, the immune system mistakes food, bacteria, and other materials in the intestine for foreign or invading substances. When this happens, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation and ulcerations. Sounds fun right?

Some people just do not know enough about the disease and will suggest eating better or working out to help the disease. Some people also suggest eating high fiber foods and vegetables. For people with these disease, we all know that high fiber foods usually make us sick to our stomach, and we can not digest vegetables to well either. Working out? Sure maybe when I am off my high dosage of steroids. It is things like that, that get under my skin.

It is also hard to explain why you can not have a certain type of food. Recently, someone offered me a chocolate brownie with nuts in it. It looked amazing, but I kindly declined. She said “I made them from scratch I saved this one just for you!” I replied with “I can’t eat it I wont be able to digest it..” She then asked “Oh are you doing the gluten free thing?”. At that point I was annoyed, and I tired of explaining things so I just replied “Yeah something like that”.  Sometimes it is easier just to hold your breath if you know someone is not going to understand. Also, you don’t need to explain to everyone what exactly is going on.

If you do attempt to explain to your friends or family about your disease, you may want to prepare yourself that they are not going to understand right away. You may hear:

  • “But you don’t look sick”  – Really? You should see my colon!
  • “You have what? I never heard of it.”  – Lucky you..
  • “Aren’t you feeling better yet?”  – Depending on the day.
  • “Maybe you should use a anti depressant”  – I think I have a right to be upset!
  • “Your taking to much medicine” – Yeah? Tell me about it.
  • “You need to change your diet”  – Believe me..I don’t eat anything I shouldn’t.
  • “Loosing weight may help”  – This disease could make me paper thin, I am lucky to have meat on my bones.
  • “Why are you always so tired, you never go out anymore”  – Fatigue is a huge part of this chronic illness.Illiness

I am not trying to be bitter however, these comments can get very frustrating. Some people really do not know when they are being offensive. Instead of asking the questions above, it may be wise to word them in the following:

  • “How are you doing today?”
  • “Is there anything I can do to make things easier for you?”
  • “I am here for you”
  • “I may not understand completely, but I am trying”
  • “It must be awful to have a disease where you feel so horrible on the inside, but it doesn’t show on the outside”
  • “I wish I could take your pain away”
  • ” I am sorry I judged you before I knew about this disease”

This is a much more positive approach and you can not expect someone to understand everything about this invisible illness. However, there are ways for people to show you that they support you. It takes time and it is hard not to get frustrated. Keep in mind that the people that want to understand will. Don’t keep explaining yourself and let it go if you are getting no where with someone.