I’m 29, struggling with AS for over 10 years. In my case, it was pretty obvious what’s going on with my body, because AS is in my family from my fathers side. When the first symptoms were shown, back in 2001, the doctors send me to do blood tests for HLA B-27. and it was positive. Although, it had to pass several years to get The Diagnose (AS), due to manifestation of the disease and the location of pain. First symptoms were shown in a lower part of spine, and after that in my both hips, but never in both at the same time. Long story short, there were several years of NSAID and physical therapy, but it was always just a short remission of pain. Oh, and „just“ some chronic gastritis and Helicobacter pylori twice in one year from the „truck-full“ of NSAID.
Sometime in 2007 I started to have some more serious problems with my hips, especially in my left one, the pain was so strong I couldn’t even stand on my left leg. That was the first time I started to limp. So my by-then physiotherapist decided to put me on methotrexate, prednisolone (Decortin) and sulfasalazine. At the age of 23! Sadly, that doctor didn’t put much effort to explain to me that these are some serious medicaton with some serious side effects. He just mentioned it’s not recommended to get pregnant or to take oral contraception with it (after I was taking all of this for like 3 months, then I stopped oral contraception). Anyway, the pain and the hip was much better, with now and then progression which was following increasing/decreasing dose of prednisolone. And after 1,5 year he put me off methotrexate. For sometime I was ok, but then the pain in my hips started to grow. Also, the pain was growing in my central part of spine heading to my chest. It was unbearable cos I wasn’t able to breathe. At that time, I started to visit some alternative practice. I have to mention there was a lot of stress in my life, not just for the disease and pain, but also for some parents issues through my whole life (they never didn’t get along and I was forever sad for that). The alternative practice helped me a bit on all fields and all was good for a while (by good I mean I was able to walk and breathe, the pain wasn’t so unbearable). Then I decided to change my physiotherapist. All that was happening to me after I was newly married, in Autumn 2008. I was already sick and tired of the medication that didn’t help me much, so I asked my new physiotherapist to get me off the prednisolone because I wanted to start a family. He agreed. Time was passing, I wasn’t getting pregnant, and the stress was increasing (same old issues plus job issues, my salary was running late or wasn’t getting any – very common in my country). So I started having trouble with my heart. I visited the cardiologist an he diagnosed me with tachycardia – a little bit caused by stress, a little bit by basic disease, a bit of chronic anemia and there it goes – I started to take beta-blockers (and still taking them).
Sometime in 2011 I started to have problems with my digestion – symptom of accelerated intestinal. I thought it was also because of the stress so it passed several months with me doing nothing about that, just suffering. And my periods were terrible painful. During that time I started again to take some NSAID cos my body was „missing“ prednisolone, I couldn’t stand the pain in my back or my hips and I still wasn’t getting pregnant. The stress was on it’s top for my job and I started to ask myself how long will I be able to stand all this. I decided to quit my job. But it was already too late. I was suffering from diarrhea and couldn’t stand on my left leg – it was so painful I couldn’t walk, sit, lay, anything! Imagine this combination! In August 2011 I ended up in the emergency. Not for the first time, but for the first time in such a serious condition. Due to my condition, I ended up in Department of Internal Medicine, with some rheumatologists and immunologists. They did to me many tests, gave me big dosage of prednisolone (Medrol) with antibiotics (ciprofloxacin and metronidazole), and put me on diet. In two weeks, from not being able to walk at all cos of hip pain and having serious diarrhea, to be able to walk almost normaly and getting diarrhea under control. The accompanying diagnose were Coxitis and Ulcerative colitis. I had to stay on the prednisolone, from bigger dosage to a lower, and stay on it to prevent the progression. After about 5-6 months I was really great. No diarrhea at all, and the hip and the back was good too. I was taking prednisolone, sulfasalazine and NSAID and the combination was winning for me to be able to live my life normally. By normally I mean not camping in the toalet or suffer from a terrible pain. I was finally able to commite for finding a new job and leave my sorrow for unhappy childhood behind me because I finally realised it’s not helping me to get better.
But everything that’s nice, doesn’t last long. In August 2012, I remember it like it’s happening me all over again, it was Saturday afternoon, my husband and I just had lunch and suddenly I felt unbearable pain in my abdomen. We saw something serious is happening so my husband called ER. After about 45 minutes of laying on the floor curled up and screaming they finally came and took me to the hospital. The diagnose was Appendicitis. We were kinda relieved that nothing more dangerous wasn´t going on to me so I wasn´t afraid of that simple and routine operation. But, it wasn´t simple and routine. I mean, the operation was, but after I woke up, the doctors told me I had internal bleeding from the rupture of the red body of the right ovarie and it was causing the appendicitis. All of that was remediated and they told me I´ be fine, but unfortunately I wasn´t. Terrible pain in my abdomen started again accompanied with diarrhea which couldn´t be stopped and I needed to get back to the hospital, to the Department of Internal Medicine. For two weeks I was forbidden to eat anything, doctors were giving me only infusion (IV). They made me some tests in order to find out what is really going on in my abdomen and bowel. The doctors discovered lots of damage in my bowel and they started to suspect I have Chron´s disease. I couldn´t believe it! I was so scared because I know how hard that disease is and what might do to the body. I made an appointment with the gastroenterologist who was pretty undetermined whether it´s the Chron´s or Ulcerative colitis. The only thing he was sure is that the damage of the bowel is severe and I need to get off of any kind of NSAID to start preventing further damaging. And that´s what destroyed me. Three days after I quit NSAID I had to face the pain that isn´t easy to describe. I ended up in the hospital again.
I had left hip bone infarct. That pain… I will never forget it… Imagine you can´t move your leg of one millimeter… and if you would, the pain was so strong people could hear me screaming to the other side of the hospital floor. The lady who was in fhe room with me was crying for seeing me in such suffer. It´s really hard for me to explain that events properly… It was a true agony. The next three-four months was the worst period of my life and it´s something that I wouldn´t wish to happend to anyone. Four weeks had to pass for the doctors to decide whether they´ll replace my left hip with artificial one or what. In the meantime they were „feeding me“ with antibiotics, dexamethasone and all kinds of drugs that you can thing of for the stage like mine. At the end doctors decided to do the orthopedic surgery called Forage, which included drilling my own hip bone for establishing circulation between my bone and cartilage.
The surgery was done, and I was suffering from bigger pain and problems than I was before. Man… by then I was weighting 45 kilograms and had total muscle atrophy of my entire body. I wasn´t able to get up of the bed, go to the toilet (I was wearing diapers), couldn´t wash myself, couldn´t take anything that wasn´t in the reach of my hands… nothing.
I have to stop here now and tell you about my family who was unconditionally and without questioning by my side. If it wasn´t for them, I won´t be able to make it. They never stopped supporting me and honestly, they were the reason for me not to give up fighting.
The biggest part of helping me on emotional and every other way was my husband. He stood there for me every second of every day in every moment. He washed me, bringing me up from the bed, fed me… I wasn´t letting any of the hospital staff put their hands on me because one wrong move could cause me unbearable pain. For example, from getting me out of bed and put me into the shower room which was 5 meters away, took about an hour. Then showering me and putting clean clothes another hour. Getting back to bed half an hour. I admire him for his strength and everything he had to watch and do for me. And he never stood up. Not a day pass he didn´t done all of this. He will forever have my admiration, appreciation and endless love. My doctors started calling him Saint Husband. J
After the surgery, orthopedist couldn´t tell if the grip was successful. The prognoses was – time will tell. I had to start some physical therapy and shortly after that they send me on home care to work on my muscle strength with physiotherapist so I could be able to go to the health resort. None of the above didn´t help me. I was suffering from constant pain, couldn´t get any muscles to be able to move on my own for maybe a little bit, I had fever all the time, my blood tests for inflammation was way too high despite taking high doses of prednisolone, NSAID, tramadolum… the medication that could ease my pain has no longer exist.
Finally, my rheumatologist realised that they can´t give anithing else but biological therapy.
Through the years, while all of this troubles wasn´t even thinkable, doctors were mentioning biological therapy to me (and to themselves…) The problem is, in our country, health system is on the edge of subsistence, the state is covering complete medical care and it has become unsustainable – meaning, it´s hard to get the medicine which is so expencive. So, in my case scenario, I had to be seriously ill for them to decide provide me something like biological therapy. I mean, did I really had to get through all that?! They could´ve gave me the medicine back in 2011 and none of this wouldn´t happen! But, I was never outraged by that fact. Honestly, I think going through this path changed me and my life completely. Before all that I was continuously ungrateful, unhappy and miserable, always wanted something else. Forever unsatisfied with things that I had and persons who were beside me. I wanted to change people who were surrounding me, not thinking I was the one that needs to change. But not being able to walk or do anything that normal, healthy people does, depend on others help for everything, be a prisoner in a hospital room or your own house, because you can´t beat dozen stairs to get out makes you realise life is so simple. When you face that kind of problems, all the other „problems“ become minor. Irrelevant. And that´s what´s on my mind every night when I go to sleep and every morning when I wake up. It´s a guiding principle now – just making through the day being grateful that you´re ok, that you can walk, that you can choose what you want to do, enjoy fresh air, sun, hanging with my friends and family, take a walk, have a job, be nice to others and respect them. Have time for everyone who needs you and do something for others… So, I´m pretty much grateful now that I had to learn it on the hard way how to be happy and satisfied in life.
I got my first IV of Remicade in February 2013. The improvement of my condition was so obvious on the first sight. The day before nurses had to help me put my legs on a hospital bed and put them down in the morning, and the next morning I was already able to take them down by myself. Uncredible! By the end of March I could throw one crutch, and in mid May I was able to walk on my own, without crutches or somebody else´s help.
In June 2013 I had to do one more surgery due to the endometriosis cyst of my left ovary which was known before but couldn´t be done earlier because of my previous condition. Gynecologist said surgery went fine and there´s still chance I might get pregnant and the ovaries function is good but I have to combine it with my biological therapy which doesn´t really recommend pregnancy.
So here I am, being on biological therapy for 1,5 year. Along with it still taking some steroids, DMARD & NSAID. Hoping to be pregnant, maybe one day, although my rheumatologist is not thrilled with the idea of taking me off the Remicade cos he´s affraid for my condition without it… but, hope dies last. I´m in very good shape, I walk normally and have full time job. I´m a fighter. Doing house and garden work too. I get tierd pretty fast but often go over my limit in everything. Since I´m on Remicade I have common dizziness and I can´t stand direct sun or stuffy rooms. But what´s that comparing to my previous health problems?
Every day I´m trying to be the best person that I can be to repay the blessing of being well.