Bad Belly Bloat

By now, I'm sure you're all used to how terrible I am at posting regularly. I'm sorry about that; sometimes I just don't want to talk about what's going on (then why have a blog? I know, I know!) and other times, after working all day online, I can't do any more computer time. Working online is awesome, but it still has its drawbacks.

Yesterday, out of basically nowhere, I was hit with a case of the Bad Belly Bloat. Endosisters, you know what I'm talking about: You suddenly look 4 months pregnant, everything hurts, and there's enough gas in you to fill a hot air balloon. Ugh.

My theory behind this BBB is threefold:

1. Stress! When I get stressed, I tend to stop eating. The exception to this rule, somehow is sugar. I don't usually eat a ton of sugar, but when I get stressed, BRING IT. Sugar is a no-no on the Endo Diet, so I am full-on confessing to mucking up on that front.

2. Menstrual Anticipation. I used to go 9-12 weeks without a period, thanks to continuous birth control. It got me through university, that's for sure. However, the older I get, the less happy my body is about this system. I cut back from 9-12 to just 9, then 7, now 6 weeks - and sometimes 6 weeks still feels too long. I know medically you actually don't "need" a period, but it's like if my body goes too long without one, I start to suffer - unfortunate, if you consider how I begin to suffer once my period starts. *facepalm* Menstural week is still a few days away (I'm still on my pill) but I guess that doesn't matter!

3. My uterus and its friends are jerks. Ok, that one is less scientific and more just me being in a bitter mood today, but come on - why get a case of BBB the same week my wedding gown finally arrives? I'm refusing to try it on until this goes away. There is no way I want a mental image of myself, in my gorgeous, vintage-themed ivory wedding dress, looking like a stuffed sausage. Not happening.

I had a lovely chat with an Endosister today, the lovely Bern Bingham (@KnockOutEndo). She too suffers from bowel/gastro-related endo issues, and here are some tips we discussed:

1. Stretch! Sometimes a good, gentle stretch can really help get the gas out and sort out those adhesions. I like to stretch on my back over my yoga ball. Today this didn't really help much, but it has in the past. (One of the joys of Endo - no predictability!)

2. Hydrate! I've said it before, and I'll say it again: WATER WATER WATER. It helps flush out the system, and I find it really helpful to reduce some of the bloating. Be careful not to drink too much water, or you can end up with a sodium imbalance, which is a serious medical situation (potentially fatal). Just make sure to keep the water going if you find it helps you.

3. Say no to caffeine! Caffeine is also a no-no on the Endo Diet, so this shouldn't be news to anyone. The exception for me, as directed by my doctor, is apples: Apples contain a natural form of caffeine, but they do not seem to have the same effect on the body as other caffeine sources (coffee, tea, pop, etc). I eat an apple every day, or at least every other day.

If you're unlucky enough to suffer from Bad Belly Bloat, my heart goes out to you. The Endo journey is a difficult one. Stay strong!


With peace & joy,
Cher

The Little Things

Hello lovelies,

After a rough few days, physically and emotionally, I've been thinking today about the things that make it all bearable. Sometimes it's not that I need everything to be magically perfect (though that would be nice), but just enough that I can at least get through my day with some patience, strength, positivity, and dignity. Some things, though not "medicinal" in the typical sense of the word, seem to make it all better. Here's my list:

1. Good Perfume. Everyone's opinion of what consititutes "good" perfume will vary, but for me, "good" perfume is excellent quality, not too flowery, not too musky, and nothing that will skunk in too short a time. My personal favourites include Burberry Touch, Chanel Chance Fraiche, and Lalique original. (Anyone who has seen my vanity table can attest to what can only be described as a "serious perfume problem." Sigh.)

As an aside, I do find that perfumes with a good vanilla note seem to settle my stomach on those lovely nausea-inducing endo days. I heartily recommend Burberry Brit for this.

2. ManicureI actually don't enjoy trips to the spa. I know, I know, there's something wrong with me - I just find them to be a bit impersonal, kind of busy, and just generally not a pleasant experience. The exception to the "no spa" rule for me is the Bayview Village Spa at Bayview Village Mall, but since I definitely can't afford that too often, that's more of a special occasion outing.

However, there is something to be said for having well-manicured nails. I don't know if it's the simplicity of the actual action itself, or something else, but I find the process of doing my nails to be calming and a bit cheering. I did mine last night, and while I still don't feel super-great, it did cheer me up and give me something else to focus on besides pain and blahness.

3. Hot Tea
I love tea. I love it so much that I have a hutch full of cups & saucers, and two shelves of tea. (The less said about the number of tea pots the better!) The smell of it brewing, the tangy, biting first sip, the warmth settling in my body ... what's not to love about a good, hot cup of tea? (Emphasis on "good" - oily, gross tea is not allowed in my house, thank you very much.)

My personal favourites include: Tetley's Orange Pekoe, Barry's Irish Blend, David's Nettle Tea (excellent for menstrual cramps!), David's Organic Peppermint (excellent for nausea!), and anybody's Irish Breakfast. To each their own, but I stick to either caffeine-free or very, very low levels of caffeine. (Some herbals do have low levels of caffeine in them.) I find caffeine makes me feel rotten, cranky, and way too jumpy - not exactly the "relaxing" vibe I'm going for.

4. Water, Water, Water!
I've posted before about how much I love water, but I'll do it again. It's amazing what a little hydration can do for you when you're feeling off. Refreshing, revitalizing, and a great way to help your digestive system at the same time. It's probably not the first thing that comes to mind, but it might help you out. I've been trying to put back extra water these last few days, which I think has been very helpful. Good for the skin, the bowel, the lips, the brain ... good for you all over.

5. Reread an Old FavouriteIf you're not a reader, replace "reread" with "rewatch," if you prefer movies. (Actually, I like both!) Since we don't have a tv in the bedroom (I refuse to have one, sorry FH!), for me curling up in bed means quiet time with a book. When I'm feeling out of sorts, I find it hard to concentrate on anything in particular, so reading something new is out of the question. What a great chance to reread something old and beloved! This week I reread Lawrence Hill's "The Book of Negroes" for about the 5th or 6th time. It's a beautiful, heart-wrenching, and totally engaging story, by the way, so go read it! 

6. Hot Shower
A hot, steamy shower is one of my absolute favourite things. We literally had to put a clock in the bathroom recently so I would stop losing track of time (and using up all the hot water). It's absolutely nothing at all for me to have a 30-minute shower without even realizing it - and yes, I know that's a huge waste of water, and yes I do feel badly about it. I find it so therapeutic though, especially right before bed.

Personally, I get a lot a lower-quadrant and lower-back pain with my endo. Setting the shower head to massager and letting the hot water hit those spots is really helpful. There's something about it that is stress-relieving, too. After, I love grabbing a pair of fluffy socks and my cosy sweat pants, and curling up with a book or movie. Renewing and pain-easing.

7. Glass of Wine
I know the endo diet calls for "no alcohol," but I just really can't stick with that, to be honest. I've had to cut out gluten, dairy, and red meat; I've chosen to cut out soy; I've chosen to reduce white sugar and caffeine; I draw the line at wine, folks - at least at this point.

It's funny, but I find that even half a glass of wine is good for settling my stomach, and of course it helps relax muscle aches as well. Half a glass before bed can do wonders for me, and as a person who just genuinely enjoys wine, it's nice that I can get some medicinal benefit out of something I'd be consuming anyway. Bonus!

Shameless wedding plug: the vidal from Willow Springs Winery in Stouffville, Ontario is fabulous!

Ok, so what's on your list? What are the little things that can make a rough day a little easier? I'm sure I will be back to add more later, but I'd love to hear from you!


Peace & Joy,
Cher

Chickpeas!

Sorry friends...it looks like I'm just destined to keep posting about food. I hope no one minds!

I've been dealing with an endo flare up since Mother's Day weekend, and food and stretching have been my saving graces. I can't not share that with you all!

First, the stretching: If you don't have a yoga ball, invest in one. Being able to stretch, on stomach AND on back, over the yoga ball, has helped me more times than I can count. Because I have rectovaginal endometriosis, I get a lot of tailbone pain, and this kind of stretching (when done gently) can do wonders. Anyway, if you haven't tried it, do I suggest it. If the pain is really bad, I find stretching over the ball with a heated up Magic Bag is a wonderful combination.

Now, on to the food!

I have always been a big "lentil/bean" person, so this is really nothing new. I've been putting chickpeas in my garden salads for years, because I love the flavour and colour, and I dig the extra protein. Yay chickpeas!

I happened upon a recipe for another salad, (trying to find the source now so I can credit it back), and I wanted to share it with you all.

CHICKPEA SALAD
1 1/2 cups diced cucumber
2 cups chopped tomato
2 15-oz cans chickpeas, drained and rinsed
1/4 cup lemon juice
1/4 cup olive oil
1/2 tsp honey
1 tsp dijon mustard
3 tbsp chopped fresh dill
Dash of freshly-ground pepper

1. Combine cucumber, tomatoes, and rinsed chickpeas in a large bowl.

2. In a small bowl, whisk together the lemon juice, olive oil, honey, and mustartd. Season with pepper, and then stir in dill.

3. Add dressing to salad and toss until well-mixed.

4. Cover, and chill at least 15 minutes before serving.

I made this tonight, and it was gorgeous. I let it chill about an hour, and I noticed a huge difference in the taste. This salad looks like it will serve 5-6 people as a side. (I also threw in some olives right before I ate it, because I have an obsession with olives...)

Chickpeas are a total powerfood, or at least they are for me. I know I've posted about chickpeas before, and I probably will again. They help my digestion, help reduce bloating, and I always feel energized and comfortably full after eating them.

Enjoy!


With peace & joy,
Cher

Post-Surgery Tips

Surgery is something most, if not all, Endo sufferers experience at one time or another, if not multiple times. Since surgery is the only definitive* way to diagnose Endo, it is a very common part of the Endo journey. Even with the best surgeon, surgery is unpleasant at best.

With 3 surgeries under my belt, I’ve compiled a list of some tips to help you have the best post-op experience you can. I know there are Endo Sisters out there who have had more experiences than I have, or have had slightly different procedures done; I encourage everyone to add their own tips in the comment section. Let’s share the knowledge!

Remember: you should follow the advice of your doctor/surgeon before following the advice here. I’m writing based on my own choices and experiences, and what was right for me is not necessarily going to be right for you. Be safe, and communicate with your doctor/surgeon.

·         Taking a stool softener when you get home from the hospital may help ease post-op constipation. Constipation can result from prescription pain medications, eating a lot of carb-based comfort foods, being inactive, and not drinking enough water. Also, with a laparoscopy, the incisions in your abdomen might make it difficult to contract your muscles as usual to have a bowel movement. I recommend a stool softener instead of a laxative because I don’t like the cramping that often comes with laxatives – use whatever suits you best and what is ok to take with any other medications. Check with your doctor/surgeon, and also your pharmacist, to make sure you’re taking something safe.

·         Once you are allowed to remove the bandages from your incisions, check your incisions every day. Report any discolouration, foul odors, inflammation, or other odd symptoms to your doctor immediately. Don’t mess around with a potentially-infected incision. If you cannot see all of your incisions yourself, be sure to have someone check for you. Your immune system will naturally be a bit weaker after your surgery, so it’s extra-important to be on guard for infections.

·         Prepare your comfort items the day(s) before your surgery: Heating pad, sweat pants, favourite snacks, duvet – whatever you’re going to want to help you relax. Make sure you put them in a reachable place. The last thing you’ll want to do when you get home is to try to pull things from cupboards and closets.

·         Do some food prep before your surgery. This will cut down on what you have to do when you’re dealing with post-op pain, and will help you make good food choices. For example, you can hardboil a few eggs – if you leave them in their shells, they’ll be good for a week or so. Make some soup or stew, and put individual portions in your fridge/freezer. Breakfast cookies, trail mixes and casseroles are also great options.

·         Listen to your doctor’s instructions. As women, we seem to be programmed to try to be superwomen – this will not work well post-op. Your doctor will give you activity guidelines, and it’s a good idea to follow them as closely as possible. Doing too much too soon can tear stitches, which can result in infections, and it can also set back your recovery. Be patient, and let your body heal at its pace. If there are things you absolutely must do, be sure to move carefully, and rest between activities.

·         Don’t go overboard with anti-inflammatories. I wish I’d known this! After my last surgery, I was prescribed painkillers but had a life-threatening reaction to them. The doctor told me to take acetaminophen, but I decided ibuprofen would be better – BIG mistake. The damage to my stomach lining was horrifying. It took ages for my gut to get back to normal. The gut pain was actually worse than the post-op pain. Not worth it.

·         Stay hydrated. Dehydration, or even underhydration, is going to make it harder for your body to heal. Even though getting up to pee may be a huge, painful hassle, a delayed recovery and/or a urinary tract infection = bigger problem. Also, water helps prevent constipation (see first point).

·         Topical muscle creams are awesome! Personally, I have a great love for A535, but you may like another brand better. It’s common for the surgical gas to settle in the shoulder/neck/back, and it can cause serious pain. Be sure to keep the cream away from your incisions (and any other open wounds) and follow the product instructions properly.

·         Don’t let your diet get off-track. When you’re laying down all day, exhausted and in pain, it’s easy to snack on your favourite comfort food and not think about it. It’s tempting, but it’s not a great idea. As soon as your appetite allows, try to keep getting your fruit, veg, and whole grains. Your body will thank you for it! Good nutrition helps your body more than that bag of chips. Don’t clog up your inactive body with a bunch of garbage.

·         Write it down. Keep track of your symptoms, your pain scale, any side effects from medications, what/when you’re taking anything, and so on. Bring this information to your follow-up appointments to share with your doctor. This information will also come in handy if you have any complications.

Good luck! Surgery can be scary, painful, and emotionally difficult; anything you can do to make your post-op experience even a little easier for yourself will help you out.

Remember to post your own tips in the comment section!

With peace & joy,
Cher

The Endo Diet

I’ve been following the Endo Diet for about a month now. Truthfully, I was following it “sort of” for a while before that, but now I have committed to it seriously. Should you try the Endo Diet? There are issues to consider before making this decision. First, let’s take a look at what the Endo Diet is.

There are some different versions floating around out there, but this is what is working for me:

·         No gluten (I’ve been gluten-free nearly 3 years, due to a severe intolerance)

·         No dairy

·         No red meat

·         No soy

·         No caffeine

·         Reduced refined sugar

·         Reduced alcohol

·         Reduced poultry/pork

·         Reduced heavy carbs

·         Increased protein (eggs, nuts, fish)

·         Increased fiber (flax seeds, hemp hearts – more on that later)

·         Increased water

Personally, I have found this to be very helpful so far. It’s too soon to say if it’s “working” or not, but I do feel a lot better. Before following this diet, I was having a lot of upper GI and uppper left rib pain. Often, after eating, I would have pain, nausea, vomiting, and bowel pain. It got so bad that I ended up in the ER, thinking my organs were exploding. That experience scared me into re-evaluating the connection between what I eat and how I feel.

For the last week, I’ve been on really aggressive twice-daily antibiotics. They have been very hard on my stomach, and I haven’t been able to follow the diet as closely as I should. I’ve had to carb load, and haven’t been able to stomach some of my usual fruit and veg. As a result, this morning I noticed the upper GI pain and rib cage pain starting to creep back. It could be coincidence, given how random Endo pain can be, but I think there’s more to it than that.

So should you try the Endo Diet? I can’t answer that for you, but if you’re having digestive issues, it may be something to consider. As always, be sure to carefully document changes you’re making in your treatment so you can track your results effectively.


With peace & joy,
Cher

My Endo Story

I'm going to attempt to tell my Endo story. "Attempt" because so much has gone on over the last 15 years, that I'm sure some details aren't as clear as others anymore. There are also things I've worked hard to forget. This isn't a competition; everyone's story is different, and everyone suffers in different ways. All I can offer you is what I've experienced myself. If you want to share your own story, feel free to use the comment section.

I was 15 when my symptoms started. My periods had been normal until then; sometimes it seems like a switch got flipped in my body and everything changed. At first, I felt fine all month until my period, which would make me nauseated and tired, and cause pain around my appendix. After two or three ER visits thinking I had appendicitis, my doctor put 1 and 1 together and told me I had "bad periods."

Eventually, maybe a few months to a year later, I started having midcycle pain as well as menstrual cycle pain. For two weeks a month, I lived on ibuprofen and gravol, and tried to live life as normally as possible. Somewhere during this time, I developed severe anxiety - I'd had too many random bouts on vomiting and lightheadedness, that it became a vicious cycle. I was either actually sick, or scared to death of being sick. To say this took a toll on my social life is the understatement of the century.

I was put on birth control, which did help a bit. My periods were shorter, and I was able to predict clearer when I would have my period. This helped me plan ahead; I knew which weeks were more likely to be bad weeks.

By the time I got to university, my menstrual cycles were so bad that I would be in bed for at least 3 or 4 days each month. Since I was trying hard to earn my degree, this complicated things. My (awesome) gynecologist recommended I try continuous birth control, and I started going 3 packs straight before having a period. Continuous birth control didn't make my periods any more bearable, but it was (and still is) great not having a period every month. This definitely was beneficial for me, because I was able to attend classes almost all the time, instead of missing classes each month.

I was 20 when I had my first surgery. They did not find any Endo the first time; they found Pelvic Congestion Syndrome, and I was advised to stop eating wheat products and anything else that might cause bloating. Cutting out wheat worked really well, but of course I didn't stick with it. The pain came back, worse than before, and I didn't give the wheat another thought - at least for a while. (Spoiler!)

I had my second surgery about 3 years after that. That time they did find Endo, in small amounts. It wasn't considered "severe," but it was definitely there. By this time, my symptoms were most of the time: lower back pain, lower right quadrant pain (extended into my thigh), nausea, constipation, diarrhea, fatigue. Life was getting harder.

I had my third surgery 3 years ago. That was a much larger, more invasive surgery. Among other things, I had my peritineum removed, which made for a very painful recovery. I had a violent allergic reaction to the oxycodone they gave me, so I had to survive on ibuprofen - which promptly destroyed my stomach lining. I can't tolerate ANY anti-inflammatories now, as they all give me allergic reactions.

Somewhere during this time, I quit my job. I had been working as an Early Childhood Educator at a local childcare centre, but the constant manual labour associated with this type of work was killing me. About a year before I quit, I started studying at night to be an Adult ESL instructor, which is what I do now. Changing professions was hard, and emotional, but it was for the best.

Following my third surgery, I felt AMAZING - for about 10 months. One day, at Wal-Mart, I suddenly felt a pain in my lower right quadrant that I hadn't felt since before the surgery. Yes, the Endo was back, and it was attacking me out of nowhere. I was so crushed, but there wasn't anything to be done about it, so I tried to go on.

About 4 months after my third surgery, my doctor determined I had a bad gluten intolerance. I don't have "celiac disease" (which is an autoimmune disease), but I must follow the same super-strict diet. She told me that this is very common with Endo sufferers; I'll post more about food intolerances later, but let me say that since going gluten-free, I've had an easier time with my digestive issues.

Around the same time as going gluten-free, a new symptom appeared: a stabbing, nightmarish pain around my tailbone and rectal nerves. It was like someone had stabbed me in the tush with a rusty, burning spike. A trip to the doctor resulted in a diagnoses of a cul-de-sac obliteration and rectovaginal Endo. Of course, these things don't always show up on ultrasounds, so the only "proof" I have of these diagnoses is what I feel, and what my doctor has told me.

So where am I now?

I work from home, which is the best possible thing in the world for an Endo sufferer (barring a magical cure, of course). If I'm having a rough day, at least I don't have to worry about commuting and making small talk with co-workers. My heart goes out to my Endo Sisters who don't have this option, because I know what a told Endo takes on professionals.

I'm not taking any medication for my Endo anymore, aside from my birth control. I'm working with my doctor, following the Endo diet, and trying to exercise regularly. I see my chiropractor and massage therapists as necessary. I dabble in aromatherapy. I listen to what my body tells me. I will post about all of those things in more detail, of course, but that's an overview of where things stand right now.

If you're wondering why I haven't mentioned other medications, it's because I haven't really taken any. In the past I've been given painkillers here and there, but I've found the side effects to be worse than the symptoms. (The exception to this would be Ponstan, which I use very, very sparingly). I prefer a more natural approach for myself, but that is absolutely NOT  judgment on anyone who uses prescribed medications to help their Endo. Everyone's journey is different, and we all have to do what works for us.

I'd love to hear your story! Post it in the comments or email me at myendowellness@yahoo.ca if you'd like me to post it for you.

With peace & joy,
Cher
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