Tuesday, January 20, 2015

My life has been a bit of a whirlwind adventure the past two months. Trying to juggle the busiest time of year at work, a new relationship, the holidays, vacations, and misbehaving Crohn's, I feel like I finally now have time to breathe or at least time for a quick update.

My liver is finally behaving, and I am finally tapering off prednisone. On the other hand, my Crohn's has never been more active, and after my latest colonoscopy, we are stuck in a crossroads of where to go to next. I am following up with my GI on Thursday, to discuss treatment options. At this time, he feels that since I have failed Humira, that other anti-TNF drugs will not prove to be that great of help. I wouldn't mind trying one of the others such as Simponi or Cimiza, but trust my GIs decision of where to go next. We have been stuck in this circle for a few months I feel, but now with the tapering off of the prednisone, am feeling the full effects of Humira not working no where near as well as it once did. This was my worst colonoscopy to date, even with being on Humira, azathioprine, and prednisone. There should be no inflammation, no evidence of disease. Hopefully on Thursday I will have a treatment plan, of where to go next.

I am finally beginning to taper my prednisone. I have been on prednisone since May, and its finally time to slowly decrease. My bones are worse for the wear from it though. Three weeks ago, I feel, slipping on black ice, and fractured my arm. This combined with a DEXA scan showing severe osteopenia has also moved my doctors to reduce the steroids.

Tuesday, November 18, 2014

Have you ever had one of those days, where life comes to an abrupt stop, even if just for a second, a minute, an hour? The little dose of reality rearing its ugly head? As my GI kindly pointed out today, I am a ticking time bomb. Luckily, I have managed to maintain, but as was evident today, I'm carefully toeing a very dangerous line with my health. Part of the difficulty, is that, for the most part, I feel and look "fine". Granted some days my 86 year old grandmother has more energy than I do, but for the most part, I am doing pretty well.

My lab work, and scans, show quite the opposite. Inflammation markers at an all time high, and severe bone loss from a combo of long term steroid use, and inflammatory bowel disease, were today's sticking points. Next plan of attack is to measure my trough levels/antibodies against Humira since I am no longer responding, give the azathioprine another month to kick in, get my routine LFTs, and meet with my GI and hepatologist in another month. Also adding in high doses of daily calcium and vitamin D to try to combat some of the bone loss. I am, unfortunately, highly steroid dependent. If I had simple, and I use this term lightly, Crohn's disease, without any complications, I would be a candidate for a resection. Unfortunately with having severe liver disease, my body cannot handle surgery at this time. My GI is pushing my hepatologist to act a bit more dramatically, and now that I've had six months of trials and tribulations trying to control the AIH, I think it's time as well.

I feel like it's only these intermittent doctors appointments that bring me back to the reality of having chronic disease. I do not try to hide or forget about my diseases, I just simply refuse to let them define who I am. Besides taking pills daily, I sometimes forget what is truly going on. I have gotten used to my body misbehaving, GI issues, bone aches, it's all apart of my normal day to day life. These appointments serve as a friendly, if not stark, reminder, that I am human, and that my health is not to be taken for granted.

Saturday, November 1, 2014

Just finished up my third full week on Bactrim DS, along with the quartet of immunosuppressing meds. I've learned that my regimen is close to that of transplant recipients. Spent the better part of this past week with a viral respiratory illness, with swollen glands, wicked sore throat, coughing and being just gross. I hope that this isn't foreshadowing the winter to come. I just feel so run down. I also have been experiencing the lovely nausea associated with azathioprine all over again, and also the hair loss has restarted.

I know I've said this numerous times before, but I feel like I'm stuck in limbo. Can't really move forward until things get under control, and doing anything humanly possible to keep from rolling back. There have been some really positive things in my life though recently, which has helped keep me above water. Some semi-famous person with Crohn's (totally blanking on whom exactly) used an analogy to describe the disease... Something along the lines of comparing the disease to a duck floating on a pond. Above the surface, everything looks fantastic, peaceful, calm, serene, but underneath the water, the duck is paddling like hell to stay afloat, to survive.

Thursday, October 16, 2014

So my appointments on Tuesday were disappointing at best. My LFTs continue to rise, and my Crohn's is the most active it's ever been. I'm working so hard to do my best to stay afloat. Keeping Paleo, working out four to five days a week, things going smoothly at work... It's just frustrating.

I am going back on azathioprine. I will be on four immunosuppressing medications, azathioprine, Humira, Myfortic, and prednisone. I will also be starting antibiotic prophalaxis, in the form of Bactrim DS, for I am an opportunistic infection waiting to happen. I have also returned to 20mg prednisone until further notice.

On the bright side, I may be one of the few people who have lost weight after six months of prednisone therapy. Trying to find the positives here. I follow up with my GI in one month, and hepatologist in two. Come on complete immune suppression (never thought I would say that in a million years). I'm not going down without a fight.

Friday, October 3, 2014

Tomorrow morning, I will be getting my monthly blood work. I'm nervous. How is a girl, whose had hundreds of vials of blood drawn within the past year, nervous about blood work? It's all about the numbers. If my LFTs aren't normalized, or at least signifcatly decreased, it will mean that I have "failed" another medication. The only problem is that I'm running out of options.

I know it's not healthy to worry or to fear something so small. I know that my life can't and shouldn't revolve around a single blood test. I just want to be prepared. This time, we spaced my appointments two months apart, with two sets of blood work. Last months blood work has been the worst since initially starting immunosuppressive therapy for AIH. There are only two medications left (and they belong to the same class of drugs), that I can try. There is also no way possible, that at this time I can discontinue the prednsione, not with my LFTs climbing. Initially, I was only supposed to stay on prednisone for six months. At this point, even if my LFTs go down, I will end up staying on prednisone for some time. This means I will be needing a DEXA scan, to get a baseline for how my bones are doing, with long time steroid use.

I need to quiet my brain. Tomorrow will come and go, and I will survive a mere needleprick. just got to try my best to stay optimistic.

Thursday, September 25, 2014

Twenty Weeks

It's been twenty weeks, since I was diagnosed with Autoimmune Hepatitis. I have graduated to monthly blood work, and going two months between doctors' appointments. Initially, I responded fantastically to Prednsione and azathiorpine. I began to taper off prednisone, and have yet to normalize my LFTs. I was switched to Myfortic (similar to CellCept), a month and a half ago, while maintaining 10mg of Prednsione. Bloodwork from the beginning of September was unfortunately more abnormal than it has been, with my LFTs continuing to rise. I get repeat blood work the first week of October, and follow up with my specialists the second week. 

More than anything, I'm frustrated. I work my ass off, am compliant with my meds, eating healthy, taking care of my body, and it doesn't seem to be helping. I am maintaining my career, working out, trying to lead a normal life. I could be sitting at home, living off the "system". Instead, I wake up each morning, no matter how tired I am, and go to work. I know life isn't a game, that there are things out of my control. I also don't want people to feel bad or pity me. I try so hard to believe that God only gives us what we can handle. It's just that we all have a breaking point, and I've been skirting around mine a bit too frequently for my liking. 

There is one more medication option that I have left, before the dreaded transplant comes into play. It's disappointing that I am not responding well to another medication, and that I'm close to exhausting my options, but I will try my best to stay positive. 

Tuesday, September 9, 2014


Work has been extremely busy the last few weeks, so much so, I've noticed it's taken a big toll on my health. Currently on day 3 of a lovely sinus infection/bronchitis. I figured it was only time before I got sick, being on three immunosuppressants. This is my first infection since starting the lovely combo in May, so I guess I've done pretty well for myself up until now.

Sometimes it is hard for me to remember to take it easy. I try so hard for my illnesses to not interfere with my daily life, that I sometimes forget how fragile my body is. I am guilty of taking my health for granted at some points. Even with having severe Crohn's, and severe hepatitis, overall, I have been fortunate. I have yet to require major surgery, and my hospital stays have been brief. I've made it four months without any major infection, and I feel so thankful I've made it this far.

The whole idea of taking it easy has always been difficult for me, but I will continue to work on it. To remember to take a break every now and again, and to give my body the rest and care it deserves.

Sunday, August 24, 2014


Or as I am now calling it, my kind of hell.  Day 9, and I still feel like complete garbage. Nausea, vomiting and exhaustion, oh my. I wasn't expecting the switch to take so much out of me, or to react so miserably to the new med. I've been doing my best to "tough it out". If I fail Myfortic, there is only one medication option left to try to control my AIH.

Humira and prednisone have been my lifesavers, even if now, my Crohn's is rebelling. I have started with pain in my ileum again, and now pain in my descending colon, which was inflamed during previous colonoscopies. Another big concern, is that I'm now going into 4 months on prednisone. My bones are not thrilled, nor are my docs. I will be on prednisone until at least October, making close to six months on a substantial dose. In. October, when we reevaluate my treatment plan, I will also be having a DEXA scan. It's also scary to think about what will happen to my Crohn's, when the prednisone is discontinued. It definitely has been helping to keep thing under control, even if I am currently having breakthrough.

For now, I hope and pray that the Myfortic works, and works well. Fingers crossed.

Saturday, August 16, 2014


This past Wednesday, I met with my liver and GI docs. My LFTs refuse to normalize, and are still elevated. I was already on the highest dose of azathioprine that I could be on, so it was decided to switch me to another immunosuppressant, Myfortic. It is similar to CellCept, a more commonly used immunosuppressant, but is coated, and is easier (hopefully) on the stomach. Myfortic isn't as safe as a drug as Azathioprine, and comes with more side effects. Our goal is to get my LFTs normal, and maintain normal while getting me off the prednisone.

Luckily, the Crohn's is behaving, for the most part. It will be interesting to see what happens with the switch, as azathioprine is commonly used to treat Crohn's, while Myfortic/CellCept haven't. It will be interesting to see what role, if any that azathioprine has had with controlling my Crohn's. Hopefully for my sake, it has played a minimal role, so that nothing changes with stopping it. We are also nervous for when I decrease the prednisone, as that most certainly has had a therapeutic effect, on both Crohns and AIH.

My life at this point is a balancing act. Trying to stay upright, on both feet has been a struggle, and not without consequences. I have traded away my life in order to stay healthy.

Monday, August 11, 2014


Just hit 3 full months on prednisone. Have a minimum of 3 more months on it, and that's only if my LFTs stabilize. It will much likely be longer than that. I'm slowly starting to see the full effects of my total immunosuppression. Cuts, scrapes, blisters, all take so much longer to heal. I used to heal wonderfully, with few scars. Now, my body is riddled with small scars, from what previously would of healed perfectly in a couple of days.

I've gained ten pounds. I'm in amazement that even with maintaining 10mg of prednisone, I have only gained ten pounds. While I'm trying my best to keep the weight gain at a minimum, I'm happy that so far, so good. It is a constant uphill battle with prednisone, to keep the weight off. Previously, and again in this round, much of it is water weight. I feel so puffy and bloated.

The scary part of this new normal, is that I've yet to hit true remission. I had bloodwork done last week, and will be getting the results Wednesday. As of two weeks ago, my LFTs were still climbing, even with being on the maximum dose of azathioprine, and 10mgs of prednisone. I think a part of me is afraid of the long term implications. I hate that there is no end in sight of being on the prednisone. I'm worried about my bone health, and well overall health stemming from long term use. I'm anxious to see why my blood counts are at, with my previous blood work showing substantially lower than average white blood cell counts.

I want remission. I know I will never be med free in my life, (unless they find a cure), but I want to reach a point where I don't have to worry about bone loss. Where I don't have to worry about getting sick constantly, where I can start to think about getting pregnant, where I am not on three different types of drugs that all independently shut down my body's immune response, not to mention being on three at the same time.

This new normal, while slowly getting to be familiar, is not okay. I'm not content. I hate feeling so run down physically that I barely have time or energy to eat dinner when I get home from work. I hate how I feel, and am scared to death of the long term effects of these medications on my body. The fear alone is more than enough to hate this new normal.