In honor of talk about your medications month, sponsored by the American Recall Center, I have decided to take a deeper look at the medications I have taken for ulcerative colitis, then and now. There is no doubt that medications taken for diseases such as Crohn’s and ulcerative colitis are both dangerous and can have life long effects on your body. Unfortunately, in my case, medications did not work. I tried many, many different medications for almost 2 years before my colon was succumbed to my disease.
I still deal with aftermath of some of the drugs that I was on for colitis. I think it’s very important to share personal experiences with different medications because there are many patients out there who are looking to bloggers such as myself for answers, for someone to relate too. Though I was never really afraid to try any new medication, I was willing to do anything to avoid having surgery. I know there are many people out there who are the exact opposite. Who will, in fact, do anything to avoid taking drugs such as prednisone or Remicade.
Regardless of your health situation and what you are currently prescribed, it is crucial to know about your options. Both in a professional manner (from your doctor and pharmacist) and from someone like me, who has personally taken the pills, sat for hours while being infused and lived with the very real side effects.
Below I am going to go into detail regarding some of the medications I have taken over the past couple of years. Trust me, the list isn’t short. It still isn’t. In my eyes, that was the life that I was given, and if sharing my experience with these drugs will help at least one person, then it is definitely worth the lengthy list. Some of the pictures and encounters that I have had sound off-putting, but you must remember that this is my personal account, not one person is the same.
I’ll start with the big dogs:
I was first put on Remicade when I was diagnosed with ulcerative colitis. After my parasites had been caught and killed (finally, for more on that you can check out my personal story in this blog) and when my GI frankly said to me, “This is the worst case of ulcerative colitis I have seen in 25 years,” I was already laid up in the hospital with an IV in my arm when the Remicade was first started. I began this drug because I was told too. I started Remicade because I was convinced that this would save my colon.
For a good time, it did. I would go to the hospital every 4-6 weeks and have my Remicade infusions. I could always tell when it was time for my Remicade, because my symptoms would become worse.
The most important questions I can think to ask your doctor before starting Remicade is how long you have to be on it. For me, they predicted a year. I wish that my doctor would have been a little more honest with me. I was told that my colon would be saved because of Remicade. It wasn’t.
I would check and double check with every doctor on your medical team to ensure they are starting you on the drug correctly. I remember having to take a series of tests to make sure that my body was suitable to receive treatment.
Remicade is a serious drug and comes with serious responsibility. If you are starting Remicade, my advice would be to make sure you are doing everything in your power to manage your disease correctly and efficiently while getting treatment. Eat right. Sleep. Don’t stress. Don’t overwork yourself. Make sure you are staying on top of scheduling your treatments. Get blood work every few weeks to track your disease process. Take the other medications you are on that are partnered with your Remicade. They are prescribed that way for a reason and are there to get you into remission.
The side effects of Remicade for me were not bad. I didn’t get sick. I would get very, very tired after my infusion (which would last about 4 hours) and would usually spend the rest of that day sleeping. The good thing about Remicade was that it did, in fact, help me for a long time.
What I have learned about Remicade is that you become reliant on it. I was so sick in the end that I was trying double doses of Remicade just to turn me around. For some, this has worked with the combination of other drugs.
For me, it didn’t, and that was ok in the end. I’m glad that I tried it.
Mercacaptopurine or 6MP
When the Remicade wasn’t working in itself, both GI doctors that treated me for my ulcerative colitis went back and forth with the idea of putting me on either Imuran or 6MP. When 6MP was decided, this was probably the most serious of the drugs that I had been on. I was very sick when my doctor decided to place me on 6MP and it was quite scary for my family and I when this drug was started.
I had to undergo another series of tests to begin treatment. 6MP is taken in a tablet form by mouth once a day at the same time every day. It is preferable to take this drug on an empty stomach. How much you take is dependant on physical factors and will be decided by your doctor.
Some of the main side effects of 6MP can be low blood counts (this is what happened to me, my white blood cell count became extremely low, I was neutropenic and in grave danger of infection) nausea, appetite loss, skin rash and extreme fatigue. I experienced most of these side effects. 6MP was a tough drug for me to be on and my body did not tolerate it well. I was on 6MP for a short time.
My advice to those starting 6MP is to take extra good care of yourself while on this drug. Though 6MP was an intimidating drug to start, my family and I were hopeful since we had heard of patients being on both Remicade and 6MP that put them into remission.
Get plenty of rest, do not drink alcohol and avoid big crowds of people, especially in the fall and winter. Talk with your doctor especially if you have ulcerative colitis and are being treated with olsalazine, mesalamine, or sulfaslazine as these drugs can react negatively with 6MP.
Prednisone or Steroids
If you ask anyone that has had IBD for any period of time, they more than likely have been on some kind of steroid, especially Prednisone. You will also have them tell you that they absolutely hate it. I have never had one person tell me, “Oh, I LOVE being on Prednisone!” But then again, who likes being on any medication?
Prednisone is the drug that I have been on for the longest amount of time to maintain my health. Prednisone is also the worst drug to be on for the amount of time that I have been on it. Prednisone has a lot of terrible side effects, all of which I have experienced.
Prednisone is a steroid that deals with inflammation and complications of chronic illness. Though Prednisone is not fun to take, it is the most beneficial (or, it was to me for some time). It would stop my bleeding and take out the inflammation of my colon.
[caption id="attachment_478" align="alignright" width="300"] Me and my puppy before my colon removal. You can see the roundness in the bottom of my cheeks from Prednisone use.[/caption]
Prednisone is not a drug that you can mess around with. You cannot miss even one pill. Take them every day at the same time. Never stop taking Prednisone suddenly. I have made that mistake a few times and have had migraines, joint pain and severe nausea. If you are going off Prednisone, it is very important that you talk with your doctor about a tapering schedule. You should always take Prednisone with food and try not to take it close to bedtime, because one of the side effects is hyper activity.
On the subject of side effects, Prednisone’s list is probably the longest. One of the main ones that I am dealing with now is bone loss or osteoporosis. I recently went to the endocrinologist to have a bone density scan and the results were less than stellar. My endo informed me that my forearms are that of a 60 year old (I’m 25) and I have problems in my hips, knees and fingers. I am now on a vitamin D and Calcium schedule because of this. Being on Prednisone for as long as I was (going on 3 years) also caused my eyesight to worsen.
[caption id="attachment_479" align="alignleft" width="300"] I don't like this picture-but it's important for me to share. I was very, very sick and had just had my colon removed in this picture. My face is extremely swollen due to high steroid dosage that was given to me intravenously before, during and after surgery. This is a harsh reality of ulcerative colitis.[/caption]
Prednisone gave me moon face, which is the swelling of your face and other abnormal parts of your body that you would not normally carry weight. This included my neck, back, arms and face. When I would receive Prednisone intravenously, that was when the side effects were the worst.
Prednisone can be daunting to begin, but keep in mind that it is being prescribed to help you, especially if you have inflammatory bowel disease. If you are nervous, you can talk to your doctor. My personal experience with Prednisone is a scary one to hear, but please keep in mind that my disease process was rigorous. Before my disease was as serious as it was, doses of Prednisone of up to 30mg I would not have any problem taking. So, do not get worked up over taking small doses. Especially if you are not staying on Prednisone for a long amount of time.
Yes, the side effects are awful. But doesn’t remission sound so much better than a few months of steroid use?
I was only on Humira for a short period of time, but I feel that sharing how Humira affected me is relevant.
Humira was my final option before surgery. I had done it all. Double doses of Remicade, hundreds of milligrams of steroids, chemotherapy, everything. My body had given up. I basically begged my GI to try Humira, even after he told me that regrettable my medical therapies, “had failed me.”
What I had heard about Humira kept me positive, even through my tears and inevitable route to surgery. The nurse had told me that she has seen girls my age with my disease start Humira and go into remission 3 days later. I was hopeful.
Humira reduces the effects of a substance in the body that can cause inflammation. Humira can lower blood cells that help your body fight infection and help your blood to clot. Use Humira exactly as prescribed and follow directions CAREFULLY.
Humira is VERY expensive and (not to scare anyone, just informative) VERY painful. I wish that the nurse would have warned me about the pain of Humira. When I was told that it was just an injection under the skin, I laughed, thinking, “I have had numerous PICC lines, more IV stabs than I can count and pain any healthy person could never imagine, how bad could it be?”
When I was injected in my right thigh, it was like an electrical shock that had a voltage of a trillion. I skipped crying and began laughing. I was sweating in places that I didn’t know I could sweat. Ow.
In the time from those first 4 injections to 2 weeks later when I was supposed to receive my next 2, my disease became urgent. I went to see my surgeon after my C Reactive Protein, which measures the disease process in your body, a normal range is a .2 to a .4, rose to a 96. I was in serious danger of bowel perforation and death.
Humira caused NONE of which; it just didn’t work for me. I know and have spoken with countless people who use Humira as their maintenance drug and they absolutely love it. It has helped them achieve remission and they give themselves a shot every so often in order to remain that way.
The valuable advice I would give to any patient starting Humira, is DO NOT inject yourself unless you are confident in your ability to do so. I am pointing out how painful Humira is, because I could never inflict that kind of pain on myself. I have given myself countless injections, Humira is one of them I couldn’t do. Seeing your nurse or doctor to receive your injections is perfectly ok, I know many people who do that. Humira is also extremely expensive, so, if you do mess up an injection on accident, it could be costly.
TPN or Total Parenteral Nutrition
TPN is responsible for feeding a person intravenously. I would receive TPN when I was in the hospital, malnourished and very sick. TPN feeds a person through their veins bypassing eating and digestion. Formulas contain nutrients such as glucose, amino acids, lipids and added vitamins and minerals.
I did have a month long stint of home care TPN, which was pumped in my body overnight. Side effects from TPN were bloating, increased diarrhea (which I already had due to my UC), and nausea. Other side effects can include abnormal heart rhythm, low blood pressure, and excessive sweating.
While you are on TPN, you are either in the hospital or being hooked up at home for up to 16 hours a day. I would carry my pump in a backpack and be treated over night. My dad, who is luckily a physician, would hook me up and decide which treatment I was receiving, either lipids or glucose.
On top of being under my dad’s watch, a home health care nurse would come to our house every week and draw my blood and check up on my TPN infusions.
[caption id="attachment_476" align="alignright" width="300"] Receiving intravenous treatment in the hospital. Most of the time, I would have more than 3 IV bags of 3 different medications running simultaneously.[/caption]
Lialda and Mesalamine
Mesalamine is a commonly used drug to treat inflammatory bowel disease. I took Lialda for the longest time out of all the options. I also would sometimes give myself Mesalamine enemas and hold them in over night for treatment of my rectum.
Lialda affects a substance in the body that causes inflammation, tissue damage and diarrhea. I had all 3 of those in the most extreme form you can find in one human. I would take 2 Lialda in the morning and 2 at night. They were very large pills and I did not see any side effects from Lialda by itself. You should take Lialda as prescribed and with a meal. Lialda is a large pill and it is coated to specifically help protect your stomach. Do not crush, chew or try to break the pill in half, I promise they slide down easy.
Symptoms can include nausea, flu like symptoms, dizziness and joint pain.
Promethazine or Phenergan
Ask any of my close friends or family members and they will tell you that I love Phenergan. Phenergan has helped me in every way, shape and form you can imagine. The worst symptom of my disease has always been my nausea. I still have problems with nausea daily with my jpouch. I just have a sensitive stomach and a different digestive system.
Phenergan controls nausea and works by changing the actions of chemicals in your brain. It can also be used as a sedative or a sleep aid. Side effects can include drowsiness, double vision, feeling nervous and dry mouth.
When Zofran didn’t work for me, I was introduced to Phenergan. I have taken Phenergan intravenously, in pill form and IM. (Intramuscular injection). All of which work wonders for my nausea. If there is one drug I can recommend anyone with IBD try, it is Phenergan. It helps you sleep, it stops your nausea and has stopped me from vomiting when I was already staring into the toilet bowel.
Do not take Phenergan and drive, drink or do anything that you would do on a normal, daily basis. It can make you very tired and some have claimed to hallucinate. I never have, but everyone is different.
To be honest, my list of drugs could go on forever. The ones that I have talked about in this post are the ones that I feel are the most important to discuss with those who are newly diagnosed, or who may not know what Crohn’s Disease or ulcerative colitis actually are. Many people ask me how I kept/keep all my drugs straight. When I was really sick, I used to have one of those weekly pill dosage containers. Every week I would fill it accordingly and that really helped me stay organized.
[caption id="attachment_477" align="alignright" width="258"] At the Cleveland Clinic with my surgeon and nurse. My surgeon is responsible for saving my life.[/caption]
With my jpouch, I am off all UC maintenance drugs such as Lialda and Remicade. There are times when I’m not feeling so hot, I will take Prednisone for a few days and my symptoms will subside. Ulcerative colitis and having a jpouch is going to be a life long learning lesson for me. I have to get used to a new body and understand which drugs will work for me, and which will actually be absorbed correctly now that I don’t have a colon.
Make sure you are talking with your doctor about any medication that you are starting that you haven’t taken before. If you’re scared, speak up! Don’t let Google run your life either. The worst thing I did was type in the medication I was starting into Google. That will only scare you. Rely on your medical team and pharmacy to keep you in touch with the reality of what you are starting.
I want to thank the American Recall Center for asking me to share my experiences with some of the prescription drugs I have tried to treat my ulcerative colitis. It is so valuable to stay informed about topics such as prescription drugs.
If you or someone you know is diagnosed with a chronic disease that requires prescription treatment, please visit the American Recall Center’s website for more coverage on different prescription medication. This month they are focusing on Xarelto, which is a medication taken to prevent blood clots and strokes. To read more about Xarelto and its risks, please visit: http://www.recallcenter.com/xarelto/
If you have any questions for me regarding the prescription drugs I have talked about in this post, please feel free to contact me by email at firstname.lastname@example.org. For more information and insight on Inflammatory Bowel Disease, you can visit our magazine at www.companionibd.com.
[caption id="attachment_480" align="aligncenter" width="630"] Me today-happy and healthy with my jpouch- and sisters![/caption]