The Fertility Journey: More Complications

As I enter the 6 month of my pregnancy with my baby girl, who shall not be named Tim as per my partner's suggestion!, I felt it was time for an update since it's been awhile.

I had the colonoscopy with removal of the partial bowel blockage done on June 4. Despite the labour and delivery unit speaking with the doctor prior to the procedure in regards to the use of at least some anaesthetic, the doctor wasn't comfortable with using any at all. So this procedure was, as you can well imagine, a *touch* painful. The good news is that they did not find any cancer cells, but they did find that I have a mild case of Crohns disease. They have chosen not to treat it at this time as it is not "severe" enough to treat and the treatment does have implications for the pregnancy, which I have already mentioned. The only thing that still remains a mystery is why I am having bleeding in that area as they could not find a source for the bleeding. So, although it's comforting to know that there is *something* going on with that part of my body I don't know if we have found the whole answer as yet. They were not able to complete the colonoscopy due to the amount of pain that I was having and the pain triggering an increase in the fetal heart-beat. It has been recommended that I have more procedures repeated after the baby is born.

It was hoped that the colonoscopy would help with my constant vomiting and pain. Unfortunately, it hasn't helped. I continue to be extremely nauseated the majority of the time, continue to bring up mouthfuls of food and acid almost "on demand", and feel lousy most of the time.

I have now come to have problems with my blood pressure being too low. It's been about 85/54 at it's highest this week. I've been passing out quite a bit and feeling "woozy" most of the time. The perinatologist has put me on a high sodium diet ("eat all the potato chips and french fries you want") and gives me an IV bag at the hospital twice a week. My sodium levels, electrolytes, potassium and iron levels are all quite low. So we're hoping that the IV therapy will give me the boost that I so desperately need. She said earlier this week that I'm only a week away from viability, the point at which a fetus can live outside the mother's womb, although the thought of having the baby that early scares me quite a bit. She has also recommended that I not be driving, so I am forced to rely on my parents to drive me the 1.5hr trip one-way to the hospital for my IV line to be done. I feel incredibly bad about the additional stress I am putting on everyone, but who could have predicted that it would turn out like this?

On a good ending note, the baby continues to do well and is growing. It's hard to believe that in a few short months we will get to meet our little jumping bean!

Coping with Physical Pain

A plan for coping with pain should include both the physical, as well as the emotional/social aspects of pain's effects.  After all, physical pain wears a person down emotionally and effects his/her social relationships.  In a previous post on Coping, I had addressed the emotional/social aspects of pain. This part will address coping with the physical aspect of pain.  

Endometriosis can cause pain in several different ways, and thus may best be dealt with through using a combination of different therapies.  How does endo cause pain? Well for starters, the endo cells themselves produce and release prostaglandins, which are inflammatory substances which can cause the healthy tissue around the implant to go into spasm and feel "scorched".  As the endo cells respond to the hormones each month and begin to shed, any deep "infiltrated" cells can become engorged and lead towards what might be medically termed as "congestion" or essentially internal swelling of the areas around the cells.  If these tissues swell enough they can put more pressure on other areas.  Endo cells also tend to be "sticky" so the possibility exists for them to form adhesions which can pull and mis-shapen the pelvic organs.  These are just a few of the examples of the ways that endo can cause pain for women with the disease.  Regardless of how it happens, it's important to understand that your pain is very real, even if others will suggest that you shouldn't be in pain at all.  Don't distrust in your body's messages!

Here are a few ideas for helping you to cope with the physical aspect of pain.  Even though they are numbered, this doesn't have any bearing on how important these ideas are.

1. Keep a pain diary.  When you set out to deal with your pain, you are going to want to know just how effective your treatments are working on your pain levels.  You will also want to be able to easily see any patterns over time that occur with your pain, such as a spike in pain levels at ovulation time.  A pain diary also communicates the message to your doctor that you take your pain seriously.  For women, a good pain diary is going to also track where you are at on your cycle.  This is important information to know, as you'll want to learn when exactly your pain tends to flare up from month to month and how it is different than at other times.  For example, perhaps the pain is more sharp just prior to your period.  This might also mean that a different form of treatment for your pain might help you better at this specific time.  

I have grown quite fond of a FREE online pain diary program provided by ReliefInSite.com. Here you can track your menstrual periods, use body maps to enter the location of your pain(s), record what treatments you are currently taking and also have a chance to rate their effectiveness of treating your pain.  You can track any alternative healing practices that you engage in as well, and how they effective they are for treating your pain.  Over time this nifty program will allow you to print out a graph of your pain, which helps you to see patterns that might occur.  You also have the opportunity to e-mail the results to your doctor, assuming that he/she accepts patient e-mails.  For online programs, this is likely one of the most comprehensive ones currently in use.  

The one thing that is missing from this site which I find to be of importance as well, is food tracking.  Many of us with chronic illnesses have food allergies or sensitivities.  The Endometriosis Association's research has noted that there is an increase in these allergies among women who have the disease.  Even if it's a "sensitivity" it can still lead to just as much discomfort as an actual allergy.  For example, if I were to have red meat, I'd be in pain for up to 3 days.  I'm talking bent over, writhing in the fetal position pain.  Avoidance is the only thing that works in this case.  Other common food products that people react to include wheat/gluten, dairy, nuts and certain fruits.  Sometimes the only way to find a food allergy/sensitivity is through the complete elimination of the suspected food product.  Regardless, it can help to track what you eat with your pain diary, as then you can notice if there is an increase in pain when you have certain products.  I also track bowel movements.  

For anyone who is interested in an Excel spreadsheet form of a pain diary, complete with a fertility tracker, I have one of these drawn up on my computer and would be happy to send it over.  I'm having problems posting it to google to post to this blog entry though.  

2. Consider pain management.  A Pain Management specialist is often an anaesthesiologist, although a few other disciplines (such as palliative care) may also have these special docs.  Many of us will be stuck with the "regular pain treatments" when we see our GPs or GYNs.  A Pain specialist is just that, a doctor who specializes in treating pain.  What is even better is if you can find one that specializes in treating pain caused by your specific condition.  The International Pelvic Pain Society is a good place to start to look for one of these doctors.  A good pain doctor will be concerned with how your pain effects your overall quality of life and will work with you to find the right combination of treatments to effectively lower your average pain score.  

3.  Have a plan to deal with your pain.  How you treat your pain when it is rated at a 2 might be drastically different than how you would treat your pain should your rate it a 7 or above.  For example, at 2 you might take a plain tylenol/advil, etc., whereas at a 7 you might be reaching for a prescription and going for a rest.  This is something that is important to discuss with your doctor.  Having a clear plan on how you will treat your pain can help to better manage some of your overall anxiety/fears about the pain.  

4.  Don't be afraid to try different approaches for dealing with pain.  Massage therapy, acupuncture, herbal/homeopathic remedies, cranio-sacral therapy can all be of benefit when dealing with the symptoms of illness.  Diet and lifestyle changes can also be helpful for minimizing symptoms.  These approaches may not take the actual disease away, but they can help to make the symptoms a touch more bearable.

5.  Try a different temperature.  Sometimes moist heat can relieve some muscle tension, while at other times icing/coolness might be of help.  Many of the ladies in the online support group that I manage have talked about using a rice sock for this purpose, that they can heat up in the microwave.  Just be sure to replace the rice from time to time.

6.  Consider alternative reasons for your pain.  A lot of women with endo have other potentially painful conditions alongside their endo diagnosis.  If you assume that the pain is due to endo, and treatment fails to help, possibly the pain isn't being treated appropriately because it comes from a different source in the first place.  For example, since my endo diagnosis I have been diagnosed with fibromyalgia.  If I only treated the pain as though it were endo pain, I'd still have my fibro pain to deal with!

7.  Try to get some form of exercise.  Easier said than done when you live a life of chronic pain.  However, exercise releases endorphins, or "feel good" chemicals in our bodies which can help to trick the body against the pain signals.  Personally, I like yoga as this I can tailor to how I am feeling at any specific time.  These gentle stretching exercises can also help to keep adhesions loose, which might help to reduce the overall pain.  

8.  Don't push yourself!  When you are feeling better, there is a tendency to push yourself to do more in fear of not being able to do ___ tomorrow.  Unfortunately, through pushing ourselves to do more, we're at the same time interrupting our healing processes.  All things in moderation.

9.  Combine your coping with physical pain plan with your emotional/social coping skills.  No Coping plan is complete without combining ways of managing your physical pain with managing the social and emotional pain that having a chronic illness can bring.  If you need ideas on how to cope emotionally with a chronic illness, you can see my earlier blog post on coping.  

I hope that you find these suggestions to be helpful.  They are by no means meant to be inclusive of all the pain treatment options out there, just enough to get you started on your way!  

Drinks of Doom: Facing Surgery Tomorrow

Tomorrow is D-day.  Or should that be S-Day?  Tomorrow morning, bright and early, I meet with the gastroeneterologist and the labor and delivery unit to do my surgery.  For those of you who haven't read my prior posts about my fertility journey, I'm now 21 weeks pregnant and have a partial bowel obstruction that must be dealt with.  Quite awhile back they had ran an ultrasound to discover why I was in so much pain, other than having a large bleeding cyst on my ovary, and they discovered the internal intestinal blockage.  This could potentially explain why food has become an enemy to me, in that I'm on several medications just to try to keep any food that goes down from making the voyage back up.  I'm rather lucky, in that since it is an internal blockage and not an adhesion related blockage, they can go in through a colonoscopy to hopefully be able to fix the problem.  At the same time, he will also see if the Crohn's disease is bad enough to warrant treatment.  They will be doing it sans anaesthetic, or with as minimial as possible, which scares the crap out of me (literally).  But then again, the risks of not treating this, or the Crohn's if needed, also scares the crap out of me.  Either way you look at it, this isn't going to be your run-of-the-mill procedure since there is also another second little person to consider in this picture.  

So today is bowel prep day.  For those who have never done this, I pray that you never have to find out what this is like.  For a "regular" person, this procedure is nasty.  For those who have to do it during pregnancy, it's anything but easy.  Eliminate food for 36 hours?  Sure, if you don't want me to be pleasant!  But then drink this awful tasting poop formula that I have to fight to keep it down or risk drinking more of it?  Cruel and unusual punishment indeed.  One day, I'll be able to look back and laugh at this experience, but today, not a chance!  

Just to add insult to injury here, I have the plumber coming at some point to fix the ceiling and I have my 5 year old home with me.  Mommy is forced to be brave and to have strangers look at her oddly when she needs to run back and forth to the bathroom.  Let's just hope that the water won't be shut off or that could be a recipe for disaster.  

I will be sure to update after the procedure is done....

An Amazing Friendship

Over the past several months I have had the opportunity to develop an amazing friendship.  This isn't your run-of-the-mill friendship, but one that has developed solely over the internet; two people brought together by their common illnesses.  Perhaps it was fate that brought us together, but regardless of the reasoning, I'm honored just to have gotten to know her.  Her committment to help others to learn about chronic illness, especially endometriosis, is both astounding and inspiring. Despite her constant pain, she works diligently to bring awareness and support to others who are affected by the many chronic illnesses which exist.  "Jeanne Endo" this blog post is for you my dear.  

Many of you will no doubt recognize Jeanne from her old "Jeanne's Endo Blog" which has now moved to Wordpress and become appropriately titled "Chronic Healing".  The old title somehow did not seem to fit all of the many subjects which Jeanne speaks to within her blog.  Jeanne has spent many hours transferring the information from her old blog to her new, and welcomes all readers to check out her blog entries.  I certainly look forward to reading more from Jeanne.

So what prompted me to write this today of all days?  Well as many of you know, I haven't been feeling the best the past several months.  In the course of our hours long talks together, Jeanne had asked me for my address so that she could snail mail me, which I gladly gave to her.  Today, I received the sweetest note from my dear friend Jeanne thanking me for being such a wonderful friend.  I can't believe that someone took the time to write me such a lovely and warm letter to say that they appreciate my friendship.  It brought tears to my eyes considering the effect that chronic illness can have on friendships.  I truly am lucky to have found such a great friend in Jeanne for whom I have the uptmost respect and admiration.  Even though we may have never met in person, her friendship is just as deep as if we had cemented it in real life.  

Thanks for being a great friend Jeanne!

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