My last pack of "birth control"

It's the last time. The last time I have to drive to the pharmacy to pick up my birth control refill, because they refused to ship it before I ran out. The last time I have break through bleeding and extreme pain for missing one day of birth control. The last time I have to eat potato chips for lunch because my uterus feels like it's trying to escape my body, Alien style...

This struggle is ludicrous. There needs to be a separate classification for hormonal therapy that is not being used as birth control. The 7 to 14 day severe pain and heavy - sometimes life threatening - bleeding started when I was 15, along with migraines which could last anywhere from 2 to 14 days. I have been fighting with doctors and pharmacists for ten years,  and before that, my mom fought with my doctors. I've been put on depo-provera, depo-luperon, and multiple "birth control" pills. It took ten years, from 2000 to 2010, to get my endometriosis and migraines under control, and then, of course, my body would override the treatments. My first endometriosis surgery was in 2006.  They found Grade 1 (lowest grade) endometriosis on my utero-sacral ligament (the one that holds your uterus in place), in the space behind my uterus, and, presumably, on my intestines. This was also the first time I had a true Crohn's flare - I dropped from a healthy 160 to 145, had severe vomiting and diarrhea, etc. I looked sick. Every month, I was checked for pregnancy, pelvic inflammatory disease, and I had multiple pap smears and intravaginal ultrasounds, and, I had my first colonoscopy to check for Crohn's. If you read other entries, I have a rare type of Crohn's that is not in the terminal ileum (the gateway between your small and large intestine, which can be viewed by a colonoscopy). My Crohn's plaques are present throughout my entire small intestine, and, apparently, doctors can't get into my small intestine by colonoscopy.

Continuing, I went into remission after the surgery in 2006, which lasted about 6 months, before the severe endometriosis symptoms returned. I was told in 2013, for the first time, that the doctors did "extensive work" on my intestines in 2006. Apparently, diffuse Crohn's disease can first present as inflammation on the outside of the intestines, which is also how early endometriosis presents in the abdomen. I was able to manage my symptoms, on and off, until 2011. In 2011, the uncontrollable spotting and long painful periods and migraines returned. I dropped body mass, while sleeping on the couch for most of the day. In 2012, after my back surgery, the symptoms intensified, leading to a full flare up in May of 2013. The migraines were present everyday until August 2013, after my second endometriosis surgery, where they found endometriosis in the same spots as my first surgery, plus the outside of my left ovary (fixed), the inside of my right ovary (unfixed), and multiple serious adhesions between my bowels and my abdominal lining, including attached to my sciatic nerve. This time, I did not go into a full remission.

I had surgery in June 2014 to remove my appendix and remove the dermoid cyst from my right ovary. Afterwards, I was sent to the GI clinic, where my incredible IBD specialist tested me for everything possibly related to my symptoms, finally landing on diffuse Crohn's disease in Sept 2015.

But, this isn't about Crohn's. For the last 15 years, if I do not have stable hormonal therapy, I suffer intense pain, migraines, and possibly life threatening bleeding. Today, after going to the pharmacy to pick up my birth control "early," I went to the bathroom, changed my (heavy) tampon, and walked outside to call my primary. I was out there about 15 minutes, and I felt faint - and I felt another large clot dropped. I bled through a heavy tampon in 15-20 minutes. Luckily, the bleeding slowed down long enough for me to get home. And, luckily, I know how to stay hydrated during these episodes. I took two pills, and, hopefully, the symptoms will stop tomorrow.

This is the last time. The last menstrual cycle. The end of fertility. A finality I can use to avoid awkward conversations about whether or not I can really have children, or if I want to.

But this will not be the last surgery for endometriosis. Monday, I will lose my uterus and my fallopian tubes, possibly more, possibly sections of my intestines. In the future, I will lose both ovaries, be monitored for abdominal cancers, and have repeated surgeries for endometriosis in my abdomen. There is no cure for Crohn's or endometriosis. These combined diseases exacerbate each other through abdominal inflammation. Even without the menstrual cycles, I will fight the migraines and endometriosis for the rest of my life. But, at least I won't have to fight for birth control for myself.

We need to reclassify hormonal therapy so that patients can receive it like any other medication. The majority of my medications are far more risky/dangerous than birth control, with the exception of Tylenol. There is NO reason females with these issues should have to suffer because of restrictions on birth control. And I will continue to fight for them, while they fight the disease.

~Alison

Goodbye Uterus; Hello Endometriosis Awareness Month

Well, this post has been 10 long years in the making. Ten years ago, in December 2006, just before my 21st birthday, I had my first abdominal surgery. I had symptoms of an autoimmune disease - I was diagnosed with Crohn's Disease, Psoriasis and Psoriatic Arthritis in the last six months. I lost twenty pounds, and my doctors started to say the dreaded C word - cancer. But I had something less deadly in mind.

Sure enough, after my abdominal surgery, I was diagnosed with endometriosis and all of my symptoms cleared up. I was only told about endo on my uterosacral ligament, and my peritoneal lining. In 2013, my second endo surgery, I was told that they had done extensive work on my intestines in 2006. In 2013, they also found ulcers or endo on the outside of my intestines and on both ovaries. The films are being sent to my GI for review, and I imagine my GI will want to stand in on the hysterectomy.

The heavy bleeding, severe pain and migraines started when I was 15. I was given multiple types of birth control. My journals from 2002, when I was 15, mention break-through bleeding, and the severe associated symptoms. Currently, I'm in a similar position. Currently, much like 2002 to 2006, the birth control helps control the heavy bleeding only. They can't stop my periods, the pain or the migraines. The symptoms are so severe, that they feel like a Crohn's flare, and I end up in the ER.

There's only one way to stop the uterine spasms. I'm meeting with my GYN next week to schedule my partial hysterectomy.

I didn't think I would be so emotional about the loss of my uterus. I don't have children, and I've decided not to have biological children - they'd have almost a 100% chance of inheriting an autoimmune disease. But I feel crushed. I feel like less of a woman. I feel like the weight is too much to bear. And no amount of logical reasoning can save me. I am, after all, losing the main organ that allows me to identify as a woman, and with it, my ability to have children. At thirty. It's been a long ten years, but nothing could've prepared me for this.

Much love to my endo and hyster sisters,
Alison

In Limbo

Hey everyone!

I know I haven't been posting much. I've been really sick since about 2012, but it took a steep turn this past May/June, with Crohn's disease. Don't get me wrong. I've always had Crohn's disease (not that I knew it), but this past 5-6 months has been killer.

I've been on the brink of a bowel obstruction for over a year now. I've had multiple CT scans and emergency room visits. I have four medicines, currently, to try to regulate my bowels, but they're not quite working properly, because the problem is inflammation in my ileum (part of small intestine). So, on days like today, I feel like my intestines are balloons about to pop, and I take the max dose of all of my meds, hoping for relief. And today, it worked, so I can go to bed, instead of going to the ER.

The road to diagnosis was long and painful, and included three abdominal surgeries. My symptoms always seemed like severe endometriosis (which several of my friends suffer from), but I never had severe endo. In all three of my abdominal surgeries, the doctors removed "extensive" inflammation and adhesions from around the outside of my intestines. I suffer from a rare disease called "diffuse Crohn's" or, medically, jejunoileitis.

Now, you may be thinking, what is rare? Well, approximately 565,000 (or, now 565,001?) people in the US have Crohn's, so that is 0.17% of the population of the US (321,000,000). Then, 5% of people with Crohn's disease have jejunoileitis, or about 28,500 people, which is 0.0088% of the population.

Let me add, to the boring stuff, that psoriasis, a related disease, runs in my family. Psoriasis, if you look it up, or click here, is pretty easy to understand. Essentially I have psoriasis throughout all of my small intestine. Literally.

Ok, so the good news is immunosuppressants like Humira worked. I've only tried Humira, and it made me so dizzy that I couldn't get out of bed, but it worked for a lot of other issues, like inflammation. So, I find out on Nov 19th which drug I'll be using next. Hopefully that one won't have such severe side effects.

Until then, I feel pretty boring. I'm catching up on TV and video games. Although, now that my vitamins are working, I can read grad school stuff occasionally. But on days like today, my only friend is my bed.

I really have Crohn's disease (and endometriosis).

Hey everyone,

I've been absent for a while from blogging, but I'm determined to do at least one post per week. It's been difficult to produce content, since I've been sick. This post is going to detail some of my suffering over this past summer, which reflects multiple flares that I've had since I was 16. But I'm doing a lot of research, and hope to discuss ways to move forward, both from my perspective and the perspective of those who have had a Crohn's diagnosis for a long time. I hope this is a place where people with any chronic illness can find useful information, and discuss important issues.

Two questions that significantly frustrate me are: "How are you doing today," and, "What did you do today/this week/this weekend."

I am in a full-on, occasionally life-threatening flare up of Crohn's disease. I've been hospitalized for a GI bleed (in September), and my condition has been getting worse since 2011. Good days, for me, are days where I can get out of bed and eat food, I don't have diarrhea, and I don't have to go to the ER. Great days for me are days when I can go grocery shopping by myself. I spend a lot of days in bed. I am very, very sick, and this limits my ability to come up with interesting topics for conversation.

I've asked my friends and family members to avoid the above questions, and questions similar to them, and to come up with positive topics for discussion instead. This has greatly improved my willingness to talk to people.

That said, here is a typical day for me, since my inflammatory markers have been high enough to diagnose an autoimmune disorder:

I wake up exhausted and in pain. I have osteoarthritis in most of my joints, but especially my lower back, hands, elbows, shoulders, hips and knees. It takes at least an hour for me to tolerate my pain enough to get out of bed. All I can take for this is Tylenol Arthritis. I am allergic to ALL over the counter anti-inflammatories (aspirin, motrin, ibuprofen, Aleve, etc), and doctors are attempting to no longer put people like me on steroids, because the cycle of flare ups and remissions seems to make the symptoms worse. Usually, I also have to run (or, lately, crutch) to the bathroom. So, I wake up in pain, run to the bathroom, and then crawl back into bed.

On most days, I am able to get up, eat a small meal and take my medicine. I also lightly clean the apartment, and talk to my awesome roomie, if she's home. Then I crawl back into bed. Eating hurts. I get tired, run a fever and have increased abdominal and arthritis pain every time I eat. If I need to go somewhere, I eat at least three hours before I have to leave, or skip eating completely. Most of the food I eat is bland, and I'm on this crazy FODMAP diet, because I have irritable bowel syndrome (IBS) in addition to Crohn's, which is pretty common.

Luckily, I am recovering from my vitamin deficiencies, so my brain is working a little better, and I can read for short periods of time - both for school and for leisure. I can also play games and catch up with people. I still can't handle a heavy reading load, and I've hit a plateau. Really, I've hit a plateau in most aspects of my life, and I won't be able to do more until I get proper treatment.

In mid-October, my doctors put me on Humira. I spent the first week in bed, because I was so dizzy that I had 2 falls. So, my doctors took me off of Propanolol, temporarily. During the second week, I had no arthritis pain! This was a terrible, terrible thing, because the dizziness was a reaction to the Humira, so they discontinued it, and my arthritis pain returned about 5 days later. The good news is that if Humira worked, then other immunosuppressants are likely to work.

The other good news is that my current medications and diet haven't been terrorizing my intestines, which means, once I start healing, I should be fine for a few years.

Hopefully you are doing much better than I am.
<3 Alison

What's in YOUR food?

There are many advantages to modern food practices, and many disadvantages. I’ve had Crohn’s disease for my entire life. It started causing problems in high school, and I had to start cutting foods out of my diet when I got deathly ill in 2006, when I was 20. It was relatively under control until 2012, and it took another three years to find the problem. But, over the last ten years, I’ve learned a lot about food.

We won’t even start with nutritional value, or how “enriched” foods don’t provide the necessary nutrients. Let’s start with the literal ingredients in processed foods.

There were four types of ingredients that I avoided on my own; in order, they were eggs, lactose, all dairy, and gluten/wheat. When I found out I had Crohn’s, I was put on the FODMAP diet, which added foods to the list, without adding back any others. The number one ingredient on this list is high fructose corn syrup (HFCS).

1    1) Eggs: I am allergic to salicylates and sensitive to sulfites (preservatives). Salicylates are the main anti-inflammatory used in multiple products, including aspirin, all over the counter pain medicine except acetaminophen/Tylenol, and some foods, including red wine, the skin of red fruits, and eggs. My allergies started with medicine and eggs. Over several years, I started avoiding baked goods, pasta, and then anything made in a factory with eggs. Read the ingredients carefully, the next time you buy candy. Most candy is made by a small number of companies, and almost all chewy candy contains eggs. Therefore, most candy is made in a factory that also uses eggs, which are powdered, and can end up in candy coatings. Egg is also in some sauces and dressings, and in most breads and pastas.

2    2) Milk ingredients: milk products are used in almost anything with flavor. These products are also usually powdered, which means I can’t eat anything made in the same factory with milk.  Milk is usually in bread items that don’t contain egg.

3    3) Gluten/wheat – is used as a thickener in most products, especially any soups or anything with sauces. And then, of course, the majority of bread products.

4    4) Sodium, HFCS, juice from concentrate, corn syrup, added sugar, etc.

I challenge you, not to avoid these ingredients, but just to start reading labels. Imagine that your child, your spouse, or you yourself are at risk for food sensitivities. Browse the gluten free items. Compare the nutritional facts on regular items and vegan items (no egg or milk). Look at the difference between vegetarian and vegan items.  Avoid HFCS as a diet for one month. Buy a cookbook that includes information on becoming vegan, eating organic, or getting all of your vitamins from foods.

To get you started, here are some simple tips:

1    1) Buy brown rice pasta, which is gluten free. It has the same amount of protein as normal pasta, and will remove one source of gluten and eggs from your diet, adding diversity.

2    2) Buy only fresh or frozen vegetables with no sauces, and add your own spices. Mix them with whole grain rice or roasted red potatoes. You can add olive oil, basil and cherry tomatoes, or garlic and parsley. Almost every vegetable is good with sautéed onion and garlic, salt and pepper. Or, you can try chili, cumin, and lemon. Check out online recipes for recipes for side dishes. 

3    3) Use dairy-free milk, such as soy milk, nut milks or rice milk. Coconut milk is great for baking, and you can use the vanilla coconut milk for baking sweets. Unsweetened soy milk is great for most other cooking projects, and it has protein, vitamins and nutrients.

4    4) Use uncured meats (uncured bacon is incredible), and grain fed and hormone free meats.

5    5) Buy as much as you can from local farmer’s markets, fruit stands and stores like Sprouts.

6    6) Growing herbs inside is difficult, but rewarding. Start with basil. You can leave it in its original planter, with partial sunlight and plenty of water. The soil should always be moist, and the planter should be able to drain. When you trim the basil, leave two sets of leaves at the bottom, and the plant will continue to grow. Also, try not to let it flower. When the top of a stem gets bushy with large leaves, trim it down. I haven't had much luck with other herbs (if anyone knows how to grow cilantro or parsley inside, some tips would be very greatly appreciated).

8    7) Rosemary grows really well as a bush in most climates. Just water it occasionally. 

But more than anything, learn how to cook from scratch for you and your family. It’s hard at first, and it takes twice as long as you expect, and no one else is going to tell you that. So start simple. I’ll be posting recipes in the near future, but here are some resources for 30 minute meals. I like the variety on the Food Network, or you can use allrecipes.com.

And now, the uncomfortable part. Corporate farms are highly efficient and produce more food than any farmer could. However, they use genetically modified foods (GMOs). Some of these modifications change the nutritional value of foods. Any food that’s made sweeter loses vitamins and natural fiber. Fiber helps increase the number of vitamins absorbed by your system. Some of these modifications are beneficial, and decrease the needs for pesticides. Permaculture, which studies sustainable farming, uses combinations of plants to fight off pests and prevent nutrient deprivation of the soil. Community gardens with vegetables and fruit trees would go a long way towards increasing access to healthy foods, so, of course, you no longer get land with a house. Just a tiny back porch. No room for a dog. No room for kids to play. And no room to grow vegetables. 

Best of luck to you,

~Alison

I Have Crohn's Disease. No, really.

Hey everyone,

So I've had a lot of GI problems, pain and general illness over the last four years. Really, since 2006, but it's been uncontrolled since 2011-2012, when I had to make drastic dietary and lifestyle changes. However, the Crohn's disease could not be seen by scope or by CT scan until now. During my most recent hospitalization, they did a special CT scan, and found evidence of Crohn's disease in the usual place - the ileum. They also found early Crohn's through an extensive scope procedure in the jejunum.

If you're interested in details, PM me. I'll be receiving treatment by Humira, most likely. It's recommended for people who can no longer control the symptoms through diet and conservative measures. Unfortunately, this means it may take 2-3 months to start feeling better.

It's a scary diagnosis, but I was ready for it. Anyone who read my blog or followed me after my appendicitis last year should remember me mentioning that I probably had Crohn's. It's nice to be vindicated. Doctors treat you like you're malingering (making it up), when they can't find solid evidence. Luckily, I have a GREAT GI doctor. She has been so supportive, and I couldn't be more grateful to my doctors, my family and my friends who have supported me through this long and painful journey. It's not over, but it should be a little better for up to four years. It's in God's hands, as usual.

Much love,

~Alison

Bronchitis Update

Well, I've officially filed a complaint against the ER doctor who "treated me" on Sunday. I have been having severe chest pain and difficulty breathing due to inflammation, likely from a viral infection, for one week. On Sunday, I had a severe episode with high blood pressure, elevated heart rate, elevated breathing rate and emotional agitation. I could not breathe. The ER doctor prescribed a medicine I was allergic to, did not prescribe an inhaler despite my history of asthma, and wrote to my primary care manager that I had a panic attack and I needed a psych eval.

Two things. First of all, if you have chest pain and difficulty breathing, you should go to the ER. Second of all, if I had been given an inhaler and a breathing treatment, then I probably would've been able to work this week instead of being at home in severe pain. 

I called my primary care manager, and they have not had any appointments for the last two weeks, while I've been struggling with this double infection (bacterial sinus infection and viral bronchitis). So I was sent back to the ER yesterday, because I could not even get out of bed. Low and behold, after a breathing treatment, my blood pressure and heart rate went down. I had very severe inflammation in my chest. They have not officially found the cause of the inflammation, but it seems most likely that it is a viral infection, since my labs have come back normal, except for an elevated white blood cell count.