Wednesday, May 23, 2007

Sickness galore!

Anne asked about me being sick, and it is a real long story. You can skip this if you have no interest in it, of course!

As you probably know by now I have a long list of auto immune problems, mainly two that dominate, Ulcerative colitis (UC) and lupus (SLE). Having an auto immune disease means your own immuen system is attacking your own body's tissue in various forms.

UC is a form of inflammatory bowel disease (IBD), a disease of the intestine, specifically the large intestine or colon, that includes characteristic ulcers, or open sores, in the colon. The main symptom of active disease is usually diarrhea mixed with blood. I was 13 when I was first diagnosed, but it dragged on for quite some time before they actually did all the tests needed for the diagnosis. My mom had to kick and scream; the Swedish doctors really dropped the ball on this one… UC is a systemic disease that affects many parts of the body outside the intestine as well. Because of the name, IBD is often confused with irritable bowel syndrome ("IBS"), a troublesome, but much less serious condition. Ulcerative colitis is similar to Crohn's disease, another form of IBD.

Ulcerative colitis is an intermittent disease, with periods of exacerbated symptoms, and periods that are relatively symptom-free. Although the symptoms of ulcerative colitis can sometimes diminish on their own, the disease usually requires treatment to go into remission.

Ulcerative colitis is a rare disease, with an incidence of about one person per 10,000 in North America. The disease tends to be more common in northern areas. Scandinavians are actually at higher risk of getting it.

Treatment is with anti-inflammatory drugs, immunosuppression (suppressing the immune system), and biological therapy targeting specific components of the immune response. Colectomy (partial or total removal of the large bowel through surgery) is occasionally necessary, and is considered to be a cure for the disease. Lucky for me the medications for UC is also what treats my other conditions, mainly lupus.

I suffered for many years with all kinds of unexplained symptoms. My Swedish doctor was only interested in UC and that is all he saw. After moving to the US and getting married I met with my wonderful Dr B. He took one look at my medical history and said: “Listen, I don’t want to scare you, and we need to confirm this with tests, but I am pretty sure you have lupus”. I had never even heard of lupus. First I was really concerned of what I read about it, but then I got this feeling of finally knowing what had been wrong all these years!

I was pretty stable and even managed to have an uneventful (very planned) pregnancy in 2002/03. I was being looked after very strictly by a specialist the entire pregnancy, they were nervous! They did an ultrasound at every appointment, and in the end I had to go for stress test several times a week. Never felt better though!

I wanted my beautiful daughter to have the best start in life as possible, so I wanted to nurse her, since this could actually prevent her from having a lot of medical problems herself in the future. I had to be off all medications while doing this, of course, but I kept telling myself I was doing just great. I started to go downhill approximately 3 months after she was born. Stubbornly I continued nursing her and insisted I was doing great. When she was just a few weeks shy of 1 year old I ended up in the hospital with severe colon bleeding. The doctors told me I was just a hair from loosing my entire colon. I had to start treatment right away. I had no choice but going cold turkey on the nursing. S took it very well. I was in paaaain. My breasts were actually square from the nurses binding them so hard, so the milk stuck in there was being molded. Ouch. Now when I think about it they could have let me pump and stopped slowly, but oh well…

Since then I have struggled to get back on my feet. I have been in and out of the hospital. I finally switched to a new gastroenterologist early this year. He has really been very helpful. Even though I despise steroids, they have been a necessary evil to put out the fire. The focus is now to find a comfortable plateau of stableness.

Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that is potentially debilitating and sometimes fatal as the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage. SLE can affect any part of the body, but most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys and nervous system. In my case it has affected pretty much any part of my body with connective tissue it feels like, from my eyes to my feet! Lupus is only treatable symptomatically, mainly with steroids and immunosuppressants, there is no cure. In my case I am no longer getting any response from immune suppressants, so I am trying my luck with Infliximab (brand name Remicade). It is a drug used to treat auto-immune disorders. Remicade is known as a "chimeric monoclonal antibody" (the term "chimeric" refers to the use of both mouse (murine) and human components of the drug. I heard they use mouse uterus to make it! Simply put, the drug blocks the action of certain cells that triggers inflammation by binding to it and preventing it from signaling. These cells are one of the key triggers and sustainers of the body’s inflammation response. Remicade is administered by intravenous infusion, typically at 2-month intervals, and at a clinic or hospital. It cannot be administered orally, because the digestive system would destroy the drug. Unfortunately there are many risks associated with Remicade, but at a certain point you have to start weighing the pros and cons.

Lupus research has dramatically increased in recent years but the exact cause of the disease is unknown and there is still no consensus on whether it is a single condition or a group of related diseases. My guess is the latter, since I have so many distinct different immune problems. I have Sjögren’s Disease (inflammation of the salivary glands), Interstitial Cystitis (inflammation of the lining of the bladder), Hypothyroidism (inflammation of the thyroid), Rheumatoid Arthritis (inflammation of the joints), Neuralgia (inflammation of the facial nerve), Morton’s Neuroma (inflammation of the foot nerve), Raynaud’s Symptom (immune attack causing white hands and feet in cold), Baker’s Cyst (large cyst behind the knee due to RA), Endometriosis, etc. I also have osteoporosis (common with UC) and recurring blood clots in my legs. The inserted a special filter in my Vena Cava vein a few years ago to prevent new clots from reaching my lungs and heart.

Lupus can be difficult to diagnose. There are blood tests, but often doctors rely on this list of symptoms. If you have 5 out of these 11 you would be considered a strong candidate for lupus. I had 8.

1. Malar rash (rash on cheeks)

2. Discoid lupus (red, scaly patches on skin which cause scarring)

3. Photosensitivity (exposure to ultraviolet light causes rash)

4. Oral ulcers.

5. Arthritis.

6. Renal disorder.

7. Neurologic disorder: Seizures or psychosis

8. Serositis: Pleuritis (inflammation of the membrane around the lungs) or pericarditis (inflammation of the membrane around the heart)

9. Hematologic disorder.

10. Anti-nuclear antibody test positive.

11. Immunologic disorder.

As lupus is a chronic disease with no known cure, treatment is restricted to dealing with the symptoms; essentially this involves preventing flares and reducing their severity and duration when they occur. There are several means of preventing and dealing with flares, including drugs, alternative medicine and lifestyle changes. In my case, maybe because I have been taking the most common drugs for two decades now, is left with Remicade, I simply do not seem to respond to or is allergic to the other drugs (except steroids, those horrible steroids!)

Patients who require steroids frequently may develop obesity, diabetes and osteoporosis (I have had osteoporoses for 15 years now…). Depending on the dosage, steroids can cause other side effects such as a puffy face (hello my current moon face!), an unusually large appetite and difficulty sleeping. Those side effects can subside if and when the large initial dosage is reduced, but long term use of even low doses can cause elevated blood pressure and cataracts. Due to these side effects, steroids are avoided if possible.

Scary to think of, but in the 1950s, most patients diagnosed with SLE lived fewer than five years!!! Advances in diagnosis and treatment have improved survival to the point where over 90% of patients now survive for more than ten years and many can live relatively asymptomatically. The most common cause of death is infection due to immunosuppression as a result of medications used to manage the disease. That is a problem with Remicade too, your immune systom is weakened, but that also invites infections to grab on to you. I have a special fight with fungus going on rigth now. It just won't budge...

Previously believed to be a rare disease, Lupus has seen an increase in awareness and education since the 1960s. This has helped many more patients get an accurate diagnosis making it possible to estimate the number of people with lupus. In the United States alone, it is estimated that between 270,000 and 1.5 million people have lupus, making it more common than cystic fibrosis or cerebral palsy. The disease affects both females and males, though young women are diagnosed nine times more often than men. SLE occurs with much greater severity among African-American women, who suffer more severe symptoms as well as a higher mortality rate. Worldwide, a conservative estimate states that over 5 million people have lupus.

I try not to dwell too much on being a sickly person, but it is hard not to when it is in your face constantly. I belive in being positive and enjoy life. You would probably never guess there was something wrong with me if you ever met me. The thing that really bugs me about having lupus is that I constantly have new things pop up. Every year there has been something else, a new “gift” from dear old lupus… This year it was the neuralgia, the facial nerve inflammation. Good one! Oh well, it could be much worse. I am indeed a very lucky person...


JaCal said...

Thanks for sharing!! Oh, my, you've been through a lot! And isn't amazing how you find yourself you have to learn so much, you almost know as much as the doctors in the end. I'm battling with thyroid problems (caused by Graves), and I'm so glad I got sick here and not in Sweden actually. Two weeks after my family doctor suspected problems I saw my endocrinologist for the first time. I just love her! They've all taken such good care of me.

Your post is so interesting, explains it all so a reader really understands. Sometimes you should meet a regular person who gone through these things, and let them explain and not a DR who is lost in all the terminology.

You're brave and an amazing person Sweflo, I feel encouraged by reading your story and I'm going to "hold my thumbs" for treatments being successful and no more new "gifts" will show up this year!!


S w e F l o said...

Yes, you are right about knowing more about doctors sometimes! Since I see so many different specialist it is pretty much up to me to keep all the details in order... I have prevented potential problems numerous times by just keeping en eye on things... Graves is pretty much the opposite of my thyroid problem, I believe you have an overactibe one and I have an underactive one. The treatment for Grave scan soemtimes result in a hypo thyroid. I have to take Synthroid every day for the rest of my life. It could be as a result form just being sick or taking so many steroids over the years. Who knows? People often take good health granted, that is for sure...

veronika said...

Tycker du ar jatte stark och positiv Sweflo! Du har verkligen gatt igenom mycket, tur att du hittade en bra doktor har i USA och att du vagade bli gravid!
Hoppas framtiden ser battre ut och att du kommer fa en underbartid pa Gotland!
Ser framemot din blogg nar du ar tillbaka igen och se vad du tyckte om att vara tillbaka i Sverige efter en sadan lang tid.

S w e F l o said...

Hej Veronika!
Innan jag blev gravid testade de mig för att se om jag hade en sorts antikropp som lupuspatienter ofta har. Jag hade turen och var negativ. Dessa antikroppar kan annars orsaka allehanda problem och missfall. Nu hade jag oturen att få missfall ändå, men ett "normalt" missfall vid 6 veckor som inte hade nått med lupus att göra. Tydligen producera man en hel hög naturligt kortison under graviditeten, kroppens eget antiinflammationsmedel. Jag mådde toppenbra! Fast allt i allt var jag utan mediciner i 2 år, och det var väl det och stressen från att få barn som gjorde att det gick nedåt sedan.

Desiree said...

Tack för att du delade med dig av din historia. Du verkar vara en väldigt stark, modig och positiv person. Jag hoppas du slipper steoiderna och att det funkar med nya medicinen istället. Förhoppningsvis fortsätter ny mediciner med mindre biverkningar att komma och andra former av behandling att utveckalas.

Anne-Marie said...

Mycket intressant att höra om din historia och erfarenheter. Man måste vara otroligt stark för att klara av både läkemedel och läkare och det verkar du vara. Någon sade en gång "Man måste vara frisk för att klara av att ligga på sjukhus". Det ligger nog något i det. Tack för att du delade med dig.

S w e F l o said...

Det är lite konstigt att läsa om allt det där, känns liksom att det kan ju inte vara jag. What wont kill you will make you stronger. Sant sant... Men det blir liksom en fråga om att inse situationen och göra det bästa av den tror jag. Inte mycket annat att göra, man kan ju inte gå och deppa ihop totalt, det löser ju inget ;-)!

Annika said...

jag säger som alla ovan:
Tack för att du skrev om din jobbiga sjukdom. Det var en mkt intressant läsning. lärorik.
Min svägerska har UC, precis som du, och jag vet vilket h-vete det är.
DU är stark!!!