Fighting The Good Fight Against Chronic Illness

fighting-against-chronic-illness

April did not get off to a great start. The last time I updated, I was in the midst of a double bowel prep for my repeat colonoscopy. The double prep was absolutely miserable. I think every nook and cranny in my entire body had been cleansed. I was lucky enough to get a nurse who got my IV started on the first try and I was ready to go. The nurse who came to take me back to the procedure room remembered me from my last colonoscopy attempt (maybe my purple hair makes me memorable). The whole team taking care of my procedure were great. Because I struggle with extreme nausea after anesthesia, the anesthesiologist tried a different type of medication. Dr P came in the room and said “Let’s do this!” and the next thing I knew I was in recovery crying. I have no idea what I was crying. The nurse said it was from the type of sedation they used and for the record, I still woke up extremely nauseous. After asking for Zofran, I asked the nurse if they were able to complete the procedure and breathed a sigh of relief when she said yes (my worst fear was waking up and being told that it failed again).

Dr P stopped by my room before I was discharged and gave me a heads up on how the colonoscopy went. They removed a polyp from my colon that was the same type of polyp they removed from my stomach during my EGD in February (called an adenoma). There were no signs of colitis and the junction where my bowel was resected looking good so outside of the polyp, the inside of my bowel looked healthy and unless something comes up, I won’t need another colonoscopy for 5 years! Hallelujah! I will need a repeat EGD next year but those are a breeze in comparison.

The most important thing discovered during the colonoscopy was scar tissue. Dr P said he had a very difficult time navigating because my bowel wasn’t as mobile as it should be and seemed to be fixed in place. The scarring is likely a main culprit of my abdominal/pelvic pain and pain with bowel movements. I am glad my colonoscopy occurred before my appointment with the surgeon as I knew this would be helpful information.

Two days later, my husband and I went back to Charlotte to see the surgeon. Just a brief recap of my endometriosis-specific ultrasound, they did not see any large implants but small implants or scar tissue are not visible on ultrasound. After reviewing the results, one of two things would happen. If they thought that surgery would be the best avenue to explore, they would set me up to see Dr S. If they thought that another type of treatment would be a better option, I would see Dr M.

The office called and set up an appointment for me to see Dr S. Because of our prior discussion, I assumed that seeing Dr S meant moving towards surgery and knowing about the scar tissue discovering during the colonoscopy as well as the crippling pelvic pain, I thought that it might be a really good option to look into.

I was wrong. That’s what I get for assuming, right?

Basically the point of the appointment was to tell me that I am not a candidate for surgery because I am too high risk due to my history of scar tissue and obstructions. I totally understand wanting to avoid the cycle of surgery to remove scarring which in turn means more scarring and then more surgery, etc. I totally get it. I am glad that I have doctors that aren’t scalpel happy but when do you get to the point where the benefits outweigh the risks?

One thing that Dr S wanted to check was my hormone levels because of my history of recurring endometriosis after a total hysterectomy. He said that my FSH level could indicate if any ovarian remnants were producing enough estrogen to fuel the endo. However, even if they found that any pieces were left behind, they still would not do surgery but would instead prescribe a estrogen suppressing drug like Lupron. I told him that hell would have to freeze over before taking that drug again. He was not amused.

The cherry on top of this fantastic appointment (cue sarcasm) was his comment that the source of my problem could come from having too many fat cells. Now I was the one who was not amused. He swore that he would have made the same comment if I had walked in at 100 lbs but you don’t tell a woman that she’s too fat and not expect her to be hurt and/or give you the death ray stare.

To summarize the appointment: 1) they will only do surgery when the scar tissue completely shuts down bowel function (cue bowel obstruction nightmares); and 2) I still dislike male gynecologists (would you go to a mechanic that never owned a car?).

Once again, I’m not sure if I had just built everything up so much in my mind that it wasn’t realistic or something else but I left feeling like I was no better off than where I started. In some aspects, I feel like I have taken a step back. I wanted to just crawl in a hole and hide out for a long, long time. I felt such a wide range of emotions that it took me some time to process hence why I didn’t update sooner. I have felt angry, defeated, hurt, depressed, anxious and betrayed.

I’m not sure if there is any worse feeling when facing a chronic illness than that of feeling like your pain and struggles aren’t validated. Out of the whole experience that is what hurt the most. So I let myself cry a little bit and grieve a little bit but I reminded myself that the fight is not over. That particular battle might have felt like a loss but there are many fights to come and I will overcome. I will be strengthened knowing that my God is a Warrior and that I am not fighting alone. I will be strengthened by the unfailing love and support of my amazing husband.I will be strengthened by the smiles and songs of my beautiful daughter. I will be strengthened by every word of hope and encouragement that I receive from every comment, every email, and message that I receive from all of you reading this.

Words cannot express how deeply my heart is touched by this community of beautiful and strong women (and if there are any guys that may pop in from time to time).  When I was asked how blogging has impacted my journey with chronic illness, I couldn’t stress enough how being a part of a community has helped me push through and keep fighting. So thank you from the bottom of my heart.

I am ready to keep fighting the good fight against chronic illness! Are you in?

My Endometriosis-Specific Ultrasound

I promise I had no intuition of dropping off the planet the last two weeks nor did I anticipate not finishing out Blogging for Endometriosis the way I had planned. I have spent so much time beating myself up feeling like there was so much more that needed to get done or that I should have been able to get done. I have looked in the mirror more than once and wanted to put a big L on my forehead. But I am trying to show myself grace. The same grace that I would be offering anyone else who was in the same situation and I am allowing myself to fully accept it.

That said, I do apologize for going AWOL on the last half of endo awareness month! 2014 has most definitely not gotten off to a great start and it seems like the more time that passes, the bigger nosedive my health seems to take. Hopefully all of the recent doctors visits, procedures, and consults will lead to a turn around!

Last week, I had my endometriosis-specific ultrasound. From all of the information that was given to me prior to the ultrasound, this is new technology that is currently only being offered in two locations in the US (here in Charlotte and at the Mayo Clinic in Arizona). This type of ultrasound allows endometriosis lesions and implants to be more easily seen during the ultrasound which can aid in diagnosing and treating endometriosis by not only being a non-invasive way to monitor the endo but also helps provide a guide if surgery is necessary by showing where trouble spots are located. To be able to get a clearer picture of what is going on, this ultrasound requires a bowel prep.

This was all of the information given to me before the ultrasound beforehand. I’m not sure if I had just built everything up so much in my head or what but I was completely let down by the experience. Maybe it was because it was brand new technology or because it is only offered so few places but I just went in with the grand idea of what the ultrasound would look like or how detailed the results would be. Honestly, if I hadn’t been told that this was an endometriosis-specific ultrasound, I wouldn’t have known it was different than any other pelvic ultrasound I have had in my doctors office. There were no large implants seen but smaller implants and scar tissue are still not able to be seen so I felt like we were really no better off than we were when we started. I definitely cried but the doctor reassured me that in no way was my pain being discounted and really validated my feelings and my experience. So far both doctors that I have seen at the Women’s Institute have been great.

After reading the ultrasound results and going over my medical history and ops reports, the team would decide which direction they thought would best to treat my case. If they thought surgery would be the best option, they would call to set me up with Dr S. If they thought an alternative treatment option (such as medication, physical therapy, etc) would be the way to go, they would set me up with Dr M (who did my ultrasound). They called yesterday and I will be seeing Dr S on Friday! I’m both anxious and relieved because I finally feel like we are taking a step toward finding relief. I’m not sure what the game plan or time line is but will definitely keep you updated!

In the meantime, I am prepping for my repeat colonoscopy tomorrow! Including this one, I have done four bowel preps in 6 weeks. Not fun. And because my colonoscopy had to be aborted in February because the prep was ineffective, I get to do a double prep for this one. Awesome. I had to drink 2 bottles of magnesium sulfate this morning and have to drink 4 liters of NuLyte between tonight and tomorrow morning. I want to throw up just thinking about it and I have to start drinking in 15 minutes.  I just keep reminding myself that this time tomorrow it will be all done and I shouldn’t have to do another prep for a long, long time! Keeping all fingers and toes crossed!

Tomorrow’s start time is 12pm so if you happen to glance at the clock around lunch say a prayer or send some vibes!

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