The prompt for Day 2 of the Health Activist Writer’s Month Challenge is “5 Things About My Condition.”
I just spend the last month talking about my journey with endometriosis so I would like to share some information about adhesion related disorders (ARD) which is a complex of symptoms related to adhesions. Over the last nine years, I have had six surgeries total. The first five were directly related to endometriosis and the last was due to a small bowel obstruction that was a direct result of adhesions. It was by far the most invasive and the most difficult surgery to recover from. I also have a 12 inch scar (that I affectionately call Frank) to remind me of last summer.
Unfortunately, I still have a lot of problems with chronic abdominal and pelvic pain which my doctors believe is a result of the combination of endometriosis and adhesions and because of my surgical history we are currently at a stand still with how to proceed.
Since ARD is often hard to diagnose and not often discussed (and is a new part of my life), I wanted to share 5 things you need to know about adhesion related disorders (source):
- Adhesions are abnormal attachments between the organs in the abdomen and are usually composed of scar tissue. Adhesions can present in various ways from loose, filmy, and flexible to dense, leathery, and hard. Common causes of adhesions are previous surgeries as well as endometriosis and other diseases.
- Adhesions can cause problems as the body is designed to move freely, including internal organs. When adhesions form between the organs, movement is lost and normal organ functions (such as digestion in the intestines) and normal body movement (such as bending or twisting) can cause pulling and tugging which can cause pain. More severe symptoms can include twisting, punching, and obstructions.
- In addition to pain, symptoms of ARD include constipation (sometimes alternating between constipation and diarrhea), changes in menstrual cycle, infertility, and pain with intercourse. Dr. Clark Gerhart states, “Symptoms of ARD will often be attributed to other abnormalities. Patient will often carry multiple diagnoses including chronic fatigue syndrome, endometriosis, irritable bowel syndrome, fibromyalgia, depression, anxiety, along with a whole host of other possible syndromes. While multiple disorders can certainly exist in one patient, the confusion over which abnormality is truly causing the symptoms adds to the frustration of ARD. This, unfortunately, adds to the discomfort experienced by those who suffer with adhesions”.
- Diagnosis of ARD includes examinations, x-rays, MRIs, and a careful review of medical history. Diagnostic laparascopy is another means to identify (and treat) adhesions.
- However, because adhesions are often the result of previous abdominal surgeries, performing surgery (often referred to as adhesiolysis) to remove adhesions is often ineffective as adhesions will simply reform. Laparoscopic surgery should be performed by a skilled ARD surgical team to minimize chances of recurrence.
Resources for ARD:
Dr Clark Gerhart, MD
International Adhesion Society
I hope you found this information helpful!
For the past week, I have been on a clear liquid diet. I was able to try soft foods over the weekend but as soon as I did, the pain and nausea shot back up so I’m back on clear liquids until at least Friday. In other words, I could eat my left arm off.
Navigating the side effects and unexpected bumps in the road with chronic illness can be difficult and frustrating but sometimes you just have to try to find the humor to keep yourself moving forward. Here are 5 ways that I have attempted to survive my liquid diet without committing a crime:
1- Drink…a lot: I try to drink as much as possible but it has been difficult. I was drinking Ensure but had to stop when they moved me back to clear liquids so Coke has pretty much been my main source of calories. However, I am down 7 pounds already. It’s not working really well. It is tough to maintain a decent calories intake on Coke and popsicles.
2- Use meal break for things besides meals: My lunch breaks the last several days have been a toss-up in trying to keep myself thinking about things other than lunch. Today I went to the doctor with my husband (I learned what it was like to be on the other side of the exam table and I don’t like it. I feel so helpless when he hurts and I cannot fix it). Yesterday I spent it cleaning my floors. Good for my house, not for my hunger.
3- Stay distracted: My favorite form of distraction has been Ghost Hunters. I am up to season 6 in my collection. Anyone want to donate seasons 7 and 8?
4- Distract yourself some more: Sorry if you follow me on Pinterest and I’m blowing up your feed. I’ve got free time on my hands that I usually spend…you know…eating.
5- Plan your perfect first meal once you are cleared to eat again: When this is all over, I am going to get a nice juicy steak. The size of my head.
Anyone have any tips on surviving three more days of clear liquids only? I need all the help I can get!
“Maybe” was the word of the appointment Tuesday at my gastroenterologist’s office.
Maybe my system is just a little sluggish.
Maybe my gastroparesis has just gotten worse.
Maybe there is in fact another obstruction on the horizon.
The last one scares me the most.
We did several x-rays in the office and they didn’t show an obstruction at that moment but my symptoms combined with my history raised some alarms. Before an obstruction forms, there is often some kinking and unkinking as scar tissue is working its magic so that could be what is causing the variance in symptoms and why nothing could be seen at the time. I had all of the same tests that showed similar results 3 weeks before my emergency surgery.
In effort to give my system a break, I’ve been on clear liquids only the last 48 hours and starting tomorrow I can transition to soft foods for the next week (the delicious gluten-free glazed donuts I ordered that were delivered today will just have to wait unfortunately). The clear liquids seemed to provide some relief from the pain and nausea but if reintroducing even soft foods causes symptoms to return, I am to call immediately. Any sudden increase or intensity of pain means I get my hiney to their ER immediately. She mentioned the two words NG Tube and I’ve been having nightmares ever since.
It really is a waiting game and its a game I am not very good at.