Is UC/Chron’s as bad as a cancer diagnosis? (Post in honor of #IBDawarenessweek)

I’m writing this post in honor of IBD awareness week. IBD stands for inflammatory bowel disease. I don’t think I’ve mentioned that term on my blog yet, so I wanted to clarify. Chron’s and UC are the two different types of IBD.

My intentions here are not to diminish the seriousness of a cancer diagnosis but to raise awareness to the seriousness of a UC or Chron’s Dx.

It was always hard to explain my disease to anyone who would ask. Usually they would already have something in their mind about what UC meant. So, they would say something like, “ and that just means your stomach hurts a lot right?” Usually, because the last thing I felt like doing was giving a pathophysiology lecture to someone not truly interested in my disease, I would just say, “yea, kinda.” That couldn’t be further from the truth.

With IBD you feel tired all the time, like cancer patients.

With IBD you are on medications that are said by medicine to help you, but also run so many risk of hurting you further, like cancer medications.

With IBD there is no cure, like cancer. Sure, major, extensive surgery could be the cure for UC, but there is a 5% chance UC will return or not work to begin with. Same story for many cancers. Remove the organ with the tumor, but there is a chance the cancer will return.

With IBD many patients are on medications that have to be infused into them weekly. Same goes for many cancer patients.

With IBD often times the patients immune system is severely diminished due to the medications taken to manage the disease, much like cancer patients.

Like cancer patients, IBD patients have to battle through the awesome (insert sarcasm) healthcare system to make sure their care is paid for and that they can receive the care needed.

Like cancer patients, for IBD patients there is truly no end in sight to battling their disease. It comes into their life and takes over, before they ever even have a chance to realize what is happening. Just. Like. Cancer.

The only thing I can point out that is different between cancer and IBD is no doctor ever told me my life was threatened by the disease, but why not? It most definitely was.

Meds, meds, and more meds.

(read the following in a really fast voice) Warning: may cause anal discharge, vaginal dryness, pelvic floor prolapse, yeast infections, weight gain, more disease, and a whole bunch of other shit that is worse than the disease you currently have. 

But on the commercial they are sure to put a smiling happy woman promising you your life back....right.

This post is going to be focused on all of the medications I tried to manage my UC with. I’m going to discuss all of the side effects I experienced, what the medication was suppose to do for me and how well it did/ (didn’t) work. Please if you are reading this because you suffer from Ulcerative Colitis or Chron’s do not loose hope that these medication will work for you. I read numerous stories of medications working for certain people but not working for others. The disease is so misunderstood that taking these medications is truly a hit or miss on whether or not they will work for certain patients. Unfortunately although some medications would provide me with some mild relief, none of them were able to help me get into remission. I never found remission during the time I struggled with UC. According to all of my Docs, remission is when you no longer have the urgency, the frequency, or the blood. Apparently they have patients who find this with medication management…. I am skeptical. I would also like to mention that since my surgery I have been on absolutely no medications!!!! That is something for me, because as you are about to read, all of these medicines changed who I was. They took away my happy.  The only medication I require now is wine. That’s because I can drink it again…. And because I no longer have excuses to avoid hanging out with my family haha!

Here it goes. I am going to try to list the medications in the order I tried them.

Also, it is important when reading about these medications to understand that the underlying cause of Ulcerative Colitis is uncontrolled inflammation. All of the medications aim to reduce the inflammation, but do so through different routes in the body.

1.     Asacol/Lialda- a 5 ASA. This medication is supposed to reduce and control the inflammation. This is like a first line medication, meaning it or another 5 ASA are one of the first ones a doc will try for you. As I mentioned in a previous post this medicine gave me UC symptoms on crack after about 2 weeks. Urgency like OMG, and I did not have urgency before taking this medicine. Then my stools were indifferent from urine. Needless to say, this one didn’t work for me. Also a major concern with these medicines is kidney function. The doc will have your blood drawn about once a month to make sure the medicine isn’t adversely affecting your kidneys.

2.      Budesonide (Entacort) - this is a corticosteroid like prednisone, but it is supposed tonly act locally in the colon. It is also considered one of the milder medications for UC. You can be on this medicine for 6 months according to the books. I was on it for a year and a half. This was actually a medicine I could sort of count on for a while. It seemed to help a lot in the beginning. However, like everything else it slowly stopped working. It really had no side effects, except later on in my disease process I thought it might be contributing to some of my low grade fevers. Because this medicine is still a steroid you still have to be on the look out for infections. It does decrease your immune system function just like prednisone. Also kidney function is affected by this medicine. I read a lot about budesonide working better for Chron’s disease than UC because it is mostly absorbed in the small bowel. After trying Uceris (which I will discuss in a minute) I truly believe this.

3.     Hyoscyamine – This is an antispasmodic. It should help with the urgency and frequency. It never did anything for me that I could tell. However, I also never really noticed any side effects from this one.

4.     Azathioprine (Imuran)-Blah. That’s all I can say about this one. This is an immune suppressor and taken orally. It actually did help my UC symptoms but here is everything else it did: Joint pain. Terrible joint pain. Fevers. Infections!! Yeast infections, strep throat, skin infections…. Bad fatigue. My Dr at the time I guess thought it was ok to live with all of these side effects as long as my UC symptoms were better. Wrong. I wasn’t settling for this.  Liver function is a concern with this medication. You are tested prior to taking the medicine to make sure your body absorbs a certain protein correctly. Don’t quote me on that. Not sure I’m right about it being a protein, but something along those lines. Also there is a risk of getting pancreatitis from this medicine. This always scared me. I already freaking had colitis. Last thing I needed was pancreatitis.

5.     Cimzia- A biologic. Another form of immune suppressor. This medicine is injected subcutaneously. It is in the same class of medications as Humira but thought to be better for pregnancy because it does not cross the placenta. I wasn’t pregnant at the time, but it could of happened. Also it was my understanding that this medicine would put me in remission and be needed for the long run so I wanted to use the safest one for pregnancy. This helped for about 4 weeks. By saying helped or worked I just mean it reduced my symptoms. It worked for 4 weeks because the first doses are loading doses and you can take them every 2 weeks. Then the dosing is spread to every 4 weeks. At that point it stopped working for me. The only side effects I experienced from this were again infections, and then extreme fatigue. For about a week after taking my dose I slept non stop.

6.     Uceris- I tried this medicine about 2 months before surgery. It was the most helpful medication I took. For about two days I think I even had formed stools. It is a medication identical to budesonide, but it is absorbed in the colon and therefore, works better for UC. It helped, but didn’t get me into remission.

7.    Prednisone- Yuck. Miserable is what this medicine eventually made me. This is a corticosteroid that affectively reduces inflammation but causes a multitude of other problems. Side effect from this medicine that I experienced: weight gain (a lot of weight gain), holding water (contributes to the weight gain and makes you feel like if someone poked your cheek you would just bust like a water balloon), Moon face. This is from the redistribution of fat that prednisone causes. I was always bigger in my thighs and smaller around the waist, but prednisone changed that for the time I was on it. It moved all my fat into my love handles. Also it shrunk my boobs. Like majorly shrunk them. I’m very glad they are back to normal. Night Sweats without fevers. Insomnia. I could sleep about 4 hours a night. Heartburn. The worst heartburn. Cravings. I could eat anything edible or not probably on pred. Amenorrhea (loss of your menstrual cycles). Yup never had them. So I took a pregnancy test about once a month for 2 months until I just accepted the fact it was the pred. I think I would have rather been pregnant. Infections. Pred also suppresses your immune system. Yeast infections were the main infection problem I had on pred. Racing heart rate. My HR would be like 120 all the time, especially on high doses. Prior to being ill my HR was always about 48, which is low, really low, but it was because I exercised so often. High BP. Like 130s over 70s. This is really high for me. Prior to this med my BP was always like 90s over 50s. Inability to focus. People would talk to me and I would just say ok, because I had no idea what they were saying. Moodiness. Wow. I could snap your head off way quicker and wittier than I could when I was 13 going through puberty. Pred made me a true badass, except I had no control over it. This medicine also will lower your white blood cell count at low levels leading inexperienced physicians to believe you do not have an infection when you probably do. 

Ok ignoring all the side effects, prednisone did reduce my frequency with UC a ton when I was on 25mg or more. The highest dose I was on was 60 mg. Close to surgery, high doses of pred weren’t even really helping me. But for the most part high doses took care of my frequency. The urgency, blood., and pain however, were always extremely intense.

8.     Xifaxan- This is an antibiotic you can take for a long period of time. There is not a generic version available yet, so it is expensive. My surgeon put me on this prior to surgery to help me taper off of the prednisone. It did that. I was able to get down to just 10mg before surgery and was having about two BMs a day. It can be prescribed without the intent of surgery and may help others. I wished I had found it sooner when I took it. It works locally in the bowel so should not cause too many issues, but I tried to eat yogurt while on it to avoid yeast infections.

9.     JPouch Surgery- No not a medicine, but I have to mention that I kicked Ulcerative Colitis and all these medications in the ass by having this surgery.

Well those were the major medications I tried. Nothing ever stopped the bleeding. For a year and a half I bled and became extremely anemic because of it. Please don’t let this post discourage you. Medications may work for you that didn’t work for me. Also, you may not experience all of the side effects that I did. These affect people in different ways. I also want to point out that these are the major medications I tried. There were also all these other meds I would have to take to treat the side effects of these medications (diuretics, antibiotics (lots of antibiotics), Tylenol, pepcid….) I honestly can’t even remember all of them. I lost who I was while on these medicines, and I am extremely glad I am able to say goodbye to all of them.

I also tried diets and a few herbs. I’ll make a separate post about that. Chelsea Lately is on and I’ll miss it if I keep typing. I can’t wait to get past telling you about all the suffering with UC and tell you about how much I have been living since my JPouch Surgery. My take down step is just 6 days away!!!

Please email or comment with any questions or comments about medications!

A reusable grocery bag with every med I was ever on.

Symptom Detail: With a Little Humorous Insight

Well first I will say, for this post, if you don’t have UC or Crohn’s or know someone who does, you are probably going to think, “Omg, is she really sharing this stuff for everyone to see?” However, if you are suffering from UC or Crohn’s or know someone who is your thoughts are going to be more like “Yea, I feel ya girl. Surprised it wasn’t worse.”

In this post I am just going to give you a list of symptoms I had that I am now positive were caused by Ulcerative Colitis, symptoms I think the meds caused, and other symptoms indirectly caused by UC.

Before I get into this, I want to throw in this little side note. No one knows what exactly causes UC or Crohn’s. There are a couple different theories. One theory is taking too many antibiotics and causing a bacterial imbalance in the digestive system. Another theory is the use of Non-Steroidal Anti-inflammatories or (NSAIDS). These are medications like Aleve and Advil or generic forms Naproxen and Ibuprophen. I will say that as a kid and young adult, I had a lot of these. There is also a genetic component to these illnesses, but not everyone who develops the disease has a family member with the disease. I do have family member who had the disease.  It is known that the disease is an autoimmune disease. This means that without doing anything in particular to cause the disease your body attacks itself. Something becomes abnormal in your system and causes your body to attack its own cells, creating bleeding ulcers. The most important thing to know here, is that you did nothing to cause this disease. You didn’t make one bad decision or a series of bad decisions to cause this. This was probably one of the hardest things for me to grasp, because this meant I had no control. If I didn’t know what I did to cause it, how was I going to fix it? I like to be in control; so needless to say, this was not ideal for me. I’m laughing at myself, because what really about having a chronic disease is ideal…..ha!

These are symptoms I had which were definitely caused by UC

1.     Urgency. Not like the kind of urgency were you drank a Starbucks and think “Woah, I gotta go to the bathroom.” This is the kind of urgency were if I’m driving and it hits me, I’m going to drive in the emergency lane to get around you and get to a bathroom as soon as I can. Or the kind were if I am in a situation in which I can’t get to a restroom, my entire body starts to sweat and get hot, because the pain is so intense. Please, if you know someone with UC, don’t ever tell that person you have a stomach ache, because they will just want to punch you in the face. I even had a hard time being empathetic to my patients in labor. I was always thinking if I can do this, you can handle a few measly contractions (not how a nurse is supposed to think). 

2.     Frequency.  I never got into that whole counting my bowel movements thing. The doctors would always ask me, “So, how many times are you moving your bowels now?” I was like really? I don’t freaking know. I am shitting a whole lot more than I would like to be, isn’t that enough info for you? The thing about UC is, the slightest thing in your colon can make you feel like you need to shit bricks. Then you go to the bathroom and its nothing but a little blood mucus. You get up wash your hands, walk out of the bathroom, turn around and come right back in, because it happens that often. I wish I could tell you how many of my old FB post came from the toilet, because I would get sick of getting up and down. So, I would just take my iPad to the toilet and hang out there for a while. Much easier than running back to the bathroom 5 seconds after leaving.

3.     Blood. Lots of blood. I mean if someone came into the bathroom and saw what my colon could put into the toilet, they would probably ask me where the body is and where I plan on hiding it (a joke, because at times there was so much blood it looked like I murdered someone in the bathroom).

4.     Cramping and weird pain. The entire time I had UC, I never noticed my menstrual cramps, which prior to UC I thought was bad pain. I think the cramping from my UC just covered them up. Sometime around February or March of 2013 I started having this extremely weird and painful sensation down my lower back. This was a symptom I never read about on any forum or blog and no Dr ever talked about, so I wasn’t really sure if it was caused by UC. One of my Docs did say that it was probably colonic spasms (meaning my colon was having spasms like a sore muscle after a workout or something). Of course, lucky me, I got another medication for this. Hyosycamine (or something like that) it was an antispasmodic and it did nothing for me.

5.     Gas and Extreme Bloating. I didn’t know what a flat stomach felt like before taking steroids for the first time. Now don’t let that confuse you to think that steroids are awesome or a good medicine, but in the beginning, before the terrible side effects, they do manage the inflammation. Taking away the inflammation took away what I always thought was bloating. I also forgot to mention Probiotics in my previous post, which is a surprise, because I loved these. I started taking these from the first time I was diagnosed. I started with Align. These completely took away my gas and bloating symptoms. As I mentioned, one theory of UC is that it is caused by bacterial imblance. The thought of Probiotics is that you reintroduce the good bacteria needed in your gut to help your system regain bacterial balance. I took Align, because it is the only probiotic that is proven (with a study or several) to help with inflammation. The thing about probiotics is they are not all the same. They all have different combinations of different bacteria. It’s important to get some insight from a Doc or someone with experience before choosing one. Anyways probiotics took care of the noisy gas problem I had and for a while it even calmed the mucus down a little.

6.     Mouth ulcers. This is one of my most interesting symptoms, because I’ve had these since I can remember. I haven’t had any since surgery though. These ulcers were like canker sores. That’s what most Docs would end up calling them. These ulcers were also the reason I was on so many antibiotics as a kid. I would never test positive for strep, have a fever, or any other sign of infection; but all my Drs thought that if my throat looked like that, I had to have an infection, so another antibiotic they would give me. They are very painful ulcers. They make eating and drinking anything pretty terrible. These ulcers would come and go. I didn’t always have them. However, for about 6 months before my UC got really bad I had these mouth ulcers extremely bad and couldn’t get them to go away. I even had them tested for Herpes 3 times thinking I for sure messed up and kissed the wrong person at some point in life (side note: it was always negative for herpes). Anyways, I am really glad this is one of the symptoms I got to say goodbye to.

7.     Anemia. At my worst my Hemoglobin level was 8.6. Normal is 8-12, and at 8 they start blood transfusions. Talk about scary.
8. Anal Fissures. Sounds like its gotta be fun right? Basically you develop small canyons in your anus from the constant irritation of the diarrhea. Butt Paste (like for a baby's diaper rash) is the best thing I found for this.
9. Pain. I am editing this post right now to add this. I mention it in some of the other symptoms, but this is pain on a whole new level. It definitely deserves  number of its own. I really don't know how your body endures this kind of pain. I know pain is subjective, but adrenaline is something, because somehow it gets you through the most painful moments of your life. I also think you get through it, because at that very moment, you really have no other choice.

The following are symptoms I had that could have been a direct result of UC or caused by the immune suppressing meds I was on.

           

1.     Joint Pain. So this symptom confused me a lot. Some days I would have such bad joint pain that I couldn’t even get out of bed in the morning. This was mainly in my large joints like knees, hips, ankles. When this happened, my joints would also be swollen, red, and hot, seeming to be more like an infection. I can’t really say a lot about this other than it freaking sucked. Now not only would I have to bolt to the bathroom because of cramping, but not it was extremely hard to physically make myself get there quickly. This also made my job an extreme challenge. Anyone who is in nursing knows that speed walking should be part of the job description, and this kind of joint pain made that extremely hard. This is also when I had Erythema Nodosum. I thought I had cellulitis, so I went to the immediate care center, then the emergency room for IV antibiotics. My symptoms got better in the hospital because I was resting (not from the antibiotics). One Dr. tried to tell me it wasn’t cellulitis and I chewed him out. I was so so so so tired of every Dr blaming everything I had on UC (erythema nodosum is an extremely painful skin and joint inflammatory condition that is common in those with UC). Anyway that Dr. was right and I chewed him out and fired him for no reason, but its hard to hear that you have a disease so severe it is affecting every organ system in your body.

2.     Extreme Fatigue. So, this could be caused by UC, the meds, and the Anemia I had resulting from UC. Most likely all three contributed. But this was my life (when not on prednisone) Go to school, or work, come home sleep. On the weekends I slept like I was never going to be able to sleep again, hoping it would help me get through the next week. Some life huh?

3.     Fevers, Chills, Nigh Sweats. OK these are symptoms that are telling you something is extremely wrong with you and your body is fighting to fix it. I had these all the time. I would be freezing before going to bed, so I would wear two pairs of sweat pants, a long sleeve shirt, and a sweatshirt, and shiver so bad from the chills that it would shake my bed. Then I would wake up completely drenched in sweat. Like I could wring out my shirt and my sheets. Gross. Yea I could take Tylenol to control this, but the last thing I wanted was to take any more medication. It’s extremely hard to feel like yourself when you are on so many medications.

4.     Infections. Ugh. Strep throat. Sore throats. Strange things that looked like pimples (probably some form of staph infection). Yeast infections, which I had never experienced before this and all I can say about those is um yuck. Not a good time, but the best thing to treat the yeast infection I found was yogurt and cut back on all carbs. No sugar for a while.  The bottom line is, when you are on these medications you can’t avoid getting infections. Your body has no immune system. Then when you get these infections, every Dr wants you on antibiotics to treat the infection. Well that’s cool and all, except I had UC and antibiotics make UC a bazillion times worse making it absolutely impossible to complete the antibiotic regimen.

5.      Cervical Dysplasia.  So these are abnormal cells on my cervix. They aren’t cancer but they are damn close. Yup, these medications that were suppose to help me almost gave me cancer, but that’s what they do. They shut down your immune system, and inhibit your body from killing off abnormal cells and the viruses that cause them leading them to replicate and continue to change even more. Luckily my Dr recognized I was on this medicine and took action to get rid of those cells. My last papsmear was normal. Thank you God.
6. Hair Loss. Yup. I could make you a wig from my bathroom floor, shower, and hair brushes. Also, my hair wouldn't grow. 

Symptoms that were an indirect result of UC

1.     Anxiety. Its extremely hard to not develop anxiety when you are always wondering if you might shit your pants any second, or if eating this or eating that may cause your gut to turn flips. It was also hard to avoid, because I was always stressing over what the medications I was taking could be causing.

2.     Homebody syndrome. If I didn’t absolutely have to go somewhere, I didn’t want to go. It was much easier for me to lay in my bed which was about 5 feet from my toilet than to go anywhere and risk using a disgusting public restroom, being stuck somewhere away from a bathroom, or just being in pain in public; that’s hard to do.

I wanted to share all of these symptoms for others suffering, or those who think they may have UC or Crohn’s. Chances are I probably forgot about some of them, so if you have questions about some symptoms you are having feel free to ask me in a comment or personal e-mail (millsh11@hotmail.com).

Haha! True for UC too!

First Post. My Story: Short Version.

Sometime around February of 2012 I started to notice things with my “bowels” weren’t exactly normal. I probably only noticed these subtle abnormalities because I was a third year nursing student. Although who knows, maybe anyone, medically knowledgeable or not, would realize that white/yellow/grey mucus in the toilet is abnormal, not to mention the gas loud enough to be confused with a shotgun or the stomach that appears three months pregnant after eating anything. Then the blood comes, and well, yea then you know you need help. So those symptoms were pretty much my life from February 2012 to July 2012. I knew something was wrong and researched it a little on my own but didn’t do anything about it. I wanted to finish the semester and learn about everyone else’s health rather than deal with my own. I should probably clue you in a little on how healthy I thought I was. I worked out 5 days a week. I was a volleyball fanatic in high school and although I didn’t play college, I never stopped exercising. I ran, I cycled, I kick boxed. I loved exercise. So all in all, if I could do all of that I had to be healthy right?

Well in July 2012 I decided to finally see a doc about my issues. Of course she had to scope me to be able to tell anything. O, I should back track a bit. Before July and the Doc, I tried Gluten Free. Like many other things I would learn, this worked…for about a week.  Anyways, after seeing the Dr. I was blessed to have my first colonoscopy experience at the age of 21. Awesome right? At this point, I was still just trying to figure out what was going on, so I was up for anything. I had my scope. My mom went with me. I was much healthier at this time than I would be in the months to come. When I was waking from the anesthesia, I remember the Dr. Saying you have “Ulcerative Colitis.” “Chron’s Disease and Ulcerative Colitis are similar, but you have the better of the two.” She gave me some meds, told me to see her in the office in a couple weeks. Like it was your every day sinusitis. Take a med and poof all better. So was I worried at this point? No. Not at all. Thought I would take this medicine for a little while and it would all go away. Not so much.

I took the medicine which was the 5 ASA (Asacol ) for about 3 weeks. I am allergic to Sulfa, so those were not an option. At week 4 on Asacol, holy shit (literally) did things change. I had fevers as high as 104. I couldn’t stop going to the bathroom. It was like the symptoms I was having previously only suddenly they were on crack and insane. My stools at this time were no different than what the goal is when you take the colonoscopy prep, basically urine. I should mention that before this time, I really didn’t have a problem with urgency. I honestly didn’t even have pain. All I had was the blood when I did go. This week, I had the urgency, I had mild pain. I thought I had caught a stomach bug. I let this last for about 3 days. (stupid, I knew better). Then I called the office of my Dr and let a receptionist tell me that a stomach bug was going around. (more stupid. What are her qualifications for answering that phone again? Right. None.) I think I was so scared I started to listen to anyone, rather than use my education and knowledge to face what was happening. I wanted to believe it was a stomach bug and it was all going to go away. Finally at day 7 of this I went back to the Dr. They put me on prednisone and I stopped the Asacol. This was my first experience with the awesome pred. I know it is hard to read sarcasm, but if I ever say anything positive about prednisone it is sarcastic. This drug is the furthest thing from awesome, but it tricks you in the beginning and makes you think it’s awesome. My symptoms went back to just the mucus and blood when I would have to go. After the 4 week course -if you are reading this because you have UC or Chrons, I’m sure you are familiar with the dosing regimen-  but after the 4 weeks I went back to the Dr. They tried Lialda. This is also a 5 ASA. My symptoms returned to urgency and urine like diarrhea with high fever. I stopped it immediately. I now had UC, an allergy to one medicine that could treat is, and an absolutely horrible reaction to another class of medicine that could treat it.  The reaction I was having wasn’t a true allergy, but just a bad reaction/side effect that some people experience. I looked the meds up in my nursing drug books, and it warns you that if you are allergic to Sulfa, you shouldn’t take 5 ASA. Guess the Docs don’t read the nursing drug guides. From this point things just got worse. I kind of have this theory that had I never taken Asacol, maybe I wouldn’t have had true UC. Probably just a theory, but I never had all of the terrible symptoms before taking the medicine.

At this time, after one round of pred, and failing the 5ASAs I was only on Budesonide. This wasn’t really doing it for me. This was from about October 2012 to December 2012. I remember taking 6 Budesonide on Christmas Day, because I wanted to be with my family, but you’re only supposed to take 3. This is were I started learning how to adjust my meds and my schedule to just “make it through the day.” At this time my Dr. wanted to put me on Imuran. I looked up the med before agreeing and I just wasn’t ready for it. I wanted to keep trying less harmful things. I’m not saying for sure Imuran is harmful, but I liked nothing that I read about it. So, back to Prednisone this time on a slower taper.

I was on Pred this time from December 2012 to March 2013. I have some pics that will show you the horrible side effects of taking this med for long periods, and that only shows the outer effects. Things were still getting worse, even on prednisone.  The pain and urgency were unbelievable. Looking back, I honestly have no idea how I got through this time. I was in my last semester of nursing school. All I wanted to do was survive it and graduate. Forget having any fun with friends. With this terrible disease all I had the energy for was school, clinical, and then I would sleep like I was in a coma . I would go to clinical and just pray I could make it through my 12 hr shift without urgency. I would do this by avoiding any food. That’s hard to do. Also Coffee was out for me, and I loved coffee before UC. After this round of prednisone I went on Cimzia. This worked in the beginning. But when I say worked, I don’t mean I found remission. I was never in remission. I mean I was able to eat some food, and maybe go out for a few hours without urgency. UC and meds were just an up in the air, who knows if it will work today or not kinda thing. I never had terrible anxiety issues before UC, but I definitely developed terrible anxiety while learning to deal with this disease.

Cimizia is a medicine like Humira, a biologic. I had to inject the medicine myself. As a nursing student and soon to be nurse I thought no problem. Not so much. It was hard even for me to figure out how to stab myself with a needle and inject a pretty thick medication.

When Cimzia didn’t work, around April of 2012. My Dr. and I discussed surgery, and I even met with a surgeon. However the surgeon was a general surgeon and didn’t think I had tried enough medications, so he wasn’t ready to cut into me. My Dr. then agreed with him and surgery was out. Now we were going to try Imuran, more Pred, and Budesonide. I was on Budesonide this whole time really.  A few weeks after taking Imuran, my colitis symptoms were getting a little better, but I was running a fever all the time. It was always about 102. I stopped the Imuran to try to help the fevers after talking with my Dr. over the phone. I should mention that this time I didn’t take the pred like the Dr wanted. I was graduating college and going on a family trip to the beach. Call me superficial but a lot of pictures get taken at these times and prednisone doesn’t exactly make me feel attractive. While all of this was going on, I was on a family vacation. Being relaxed and not stressed helped my symptoms so much that week. I was almost having formed stools by the end of the vacation and even better it was only once a day (for about two days) However, the urgency continued to get worse and when I had to go, I had to go.

After returning home from this vacation, I studied for my NCLEX, Passed the NCLEX, landed my dream job, and got a new Dr. My new Dr. put me on Uceris, which again I thought for about 2 weeks was my miracle drug. I stayed on Cimzia through this. My symptoms rapidly got increasingly worse. BMs were about 6 a day. I went from weighing 140 to 114 in about a week and a half. I developed Erythema Nodosum. I had chills, fevers, and night sweats that soaked my bed so much it would wake my fiancé up.

Finally I had my second colonoscopy and my new Dr. told my fiancé how sick I really was.  He wouldn’t complete my scope, because my colon was so inflamed he thought he would perforate it. I went back on Prednisone at this time and he worked with the greatest colorectal surgeon in my city to get me in for a total colectomy in about 4 weeks.

So this is where I am now. I had my total colectomy with temporary Ileostomy and JPouch construction about 6.5 weeks ago. Now in 1.5 weeks I will have my reversal. At this point. I am so incredibly glad that I had this surgery. Yea having a shit bag, as I call it, it a little abnormal, killed my sex life for about 2 weeks, but really it just gave me my life back. I can go places and not know where the bathroom is. I can drive and not worry about not having an exit soon enough, and most importantly I don’t have pain. Incredible.

The purpose of this blog is to share with others who suffer with UC or Chrons my story. I found blogs to be the most helpful when I was researching the JPouch surgery and medicines. This was really just a short version of my story I wanted to have for my first post. I plan to post so many more things, like:

1.     How I also dealt with cervival dysplasia, more than likely a side effect of the medications that suppress your immne system so much

2.     More about all of the symptoms I experienced and how UC terribly limited my life.

3.     More about all of the medications, herbals, and diets I tried before deciding on surgery.

4.     How the people around you should approach you about your disease, or at least the things that annoyed me so much.

5.     The surgical experience and PICTURES!!

6.     Dealing with the temporary ostomy and how I care for my little guy  (I really like him, because he gave me my life back)

7.     AND in 1.5 weeks I can share about the take down and continue to share about my life with a working JPouch.