Leaning on your spoonie support system

Talking through endometriosis, ulcerative colitis, hysterectomies and more

Rachel Egan, I am so delighted to be interviewing you today as I think your story, while complicated, will resonate as a whole – or in parts – to a lot of people. To give people a background, I was admitted to the Vancouver General Hospital almost exactly a year ago with what I thought was the flu. 3 days in, the gastroenterologist dropped a bomb on me that I had severe ulcerative colitis and treatment would be discussed shortly, as well as pain management and next steps. In a flurry of emotions I reached out to the one health-related facebook group I was part of – the BC Endometriosis facebook group – and cried for help. “Does anyone here also have ulcerative colitis? I just got diagnosed and I need advice”. Rachel DM’ed me and introduced herself as having both diseases – endometriosis and ulcerative colitis. She calmly asked me what the doctors had told me already, which was that they would be putting me on asacol, prednisone and keeping me for a few more days to make sure the medication was a good fit. From there Rachel began telling me her story, provided me with the best perspective – a patient perspective – and became my voice when I was losing my own.

Rachel, thank you so much for allowing me to share your story with others. First off, many women with endometriosis are always curious how I was diagnosed with UC because we all share so many bowel symptoms. I think sharing your diagnosis would help others. Do you remember how you were diagnosed?

I’ve been sick most of my life.  I struggled with depression as a teen due to feeling sick and achy all the time.  I was stuck in a bad cycle of trying to get my doctor to take me seriously and it being told: “You’re an anxious person, of course you feel sick all the time.”  Fast forward to being a mom of a 3 year old toddler who needed surgery. The stress hit me like a tonne of bricks even though the doctor told me it’s usually harder on the mom than the child having the surgery.  The stress caused the colitis to flare up with continuous blood for a months. My GP at the time said, “Oops, I think we missed something”. I cried. FINALLY he admitted it wasn’t all in my head! It took 3 long months, but we finally figured out that it was UC.  I remember my first colonoscopy in its entirety. Prior to my scope, I researched what UC would look like on the camera. I remember watching the camera on a huge tv screen and right away saying, “Fuck…that’s not a healthy colon is it?”. Again the wave of relief that came over me.  Something had been wrong all those years! I finally had an answer!!

Its funny how we remember all the little details of a diagnosis because it’s so validating. Unlike myself you were diagnosed with Ulcerative colitis first. What medications did they put you on?

I was first put on mezavant and salofalk suppositories for 9 years; on and off entocort and prednisone the last few years.  Mezavant was working really well with no side effects but after a somewhat predicted flare from a surgery and the stress of quitting smoking, the doctors closely monitored me with the addition of Imuran and salofalk enima’s.

And what are you taking now for the UC?

I’m currently on 8 oral Salofalk pills, 3 oral imuran pill, with salofalk suppositories and enimas as needed. Thankfully I experience minimal side effects from all the drugs with the worst being nausea post imuran pill.  This was easily remedied with taking a dose at night and sleeping through the nausea.

And then all of a sudden you found out you had endometriosis. Do you remember how that went?

I had such extreme periods my whole life, and it had gotten to the point where I couldn’t even stand up straight without being in intense pain. My left ovary had shown a large cyst in a scan, and with me pushing for a hysterectomy (I was anemic due to blood loss from periods and UC), my gynecologist agreed that an exploratory surgery would be a good idea.  We had agreed that removal of my uterus would be a good idea to combat anemia and would try and keep both ovaries. Unfortunately my left ovary was mangled from the cyst and it had to be removed. I remember waking up from the surgery, hoping that a diagnosis of endometriosis was going to happen, hoping that it wasn’t all in my head again! I had such a huge wave of relief when my doctor spoke to me about the deposits she found and she tried her best detaching my bladder from my cervix!  Unfortunately she was only able to deal with what was at the belly button and down so we weren’t able to eliminate the pain above it.

One thing we talked about while I was still in the hospital was learning how to discern between the diaphragmatic endo pain and the colon pain. After a year I can probably describe the two but it’s still tough. What about you?

I was looking forward to a hysterectomy because maybe I would finally be able to tell the difference between the two diseases.  Some things I observed was that the endo and scar tissue created a bad ripping and tearing sensation in the abdomen, sharp lightning bolts and hot pains, and dull chronic pelvic floor pain. With endo you can feel tired but have some energy because you can still eat.  With UC, when it is bad, the body is weak and intestines are spazztic. The body just can’t absorb anything nutritional from food so one just becomes weaker. But what they share is ‘keel over below the belly button cramping’.

I know I find it hard not being able to take NSAIDS. The one thing that has always given me some relief from endo pain – especially the diaphragmatic pain – is Naproxen. But I can’t take it anymore because of the UC. What about you?

Pain relief is difficult for me as well. I cannot take NSAIDS either due to UC, and I have to limit acetaminophen because of the impact it has on my liver (due to being on imuran).  This leaves me in the world of narcotics, which really means I suck it up until i’m in tears. Fear of narcotic dependency always looms over my head so I avoid taking it at all costs.     

There are so many things we have to be careful of when dealing with both diseases. I was in so much pain post endo surgery #2 and was in the ER seeking relief. They were really hesitant to give me narcotics as i had previously been in that emerge numerous times for pain relief, so they gave me some sort of anti-inflammatory.  I reluctantly took it as I was desperate for relief. I ended up with what we thought was a bladder infection a few days later and needed antibiotics as well. That antibiotic is now on my allergy list because it caused such a bad reaction. The combination of NSAID’s and antibiotics put me into a full blown UC flare. My entire colon was inflamed.  It was horrible, and I was bedridden for months. I will never take a medication to ‘please’ a doctor ever again. I should trust my gut instinct and know that I know my body better than an ER doctor does.

Let’s talk about the hysterectomy for a second. More and more women of all ages are having hysterectomies as a therapy for endometriosis. My specialists have never mentioned this as an option, and it’s a big decision. How did you get there with your doctor?

I was anemic from the UC, and my periods were so painful and heavy (2-3 days of going through heavy flow tampons every 20-40min). I physically couldn’t handle a period anymore. I was so blessed to have a child, but my body was done and it was easy to rationalize with my gynecologist that it was in my best interest.  So this was part one of my hysterectomy, removal of the uterus and left ovary. Part two happened 2 years later after my local Gynecologist said he wasn’t skilled enough to do my surgery due to it’s impact on my bladder. I started going to BC women’s hospital where I was on Visanne for 1 year. This worked well for a year, and then gradually quit.  I was unable to stand up straight again, I had to use a scooter to do groceries. My quality of life was poor again so we decided to give Lupron a try before removing the last ovary. It was a horrible experience being on Lupron (still dealing with the side effects today), but it did show that my pain settled a bit with hormone suppression. This was enough to convince my surgeon that it was a good idea to remove it.   So surgery 2 happened. My right ovary was dug out from my abdominal wall (it took them awhile to find it) and they removed endometrial deposits from my pelvic floor and bladder, and all the way up to my diaphragm.

The past couple years I tried to immerse myself in yoga and meditation, but even gentle motions like yoga was causing tremendous amount of pain.  This may be because the excision surgery and massive UC flare put me on bedrest for a few months. The lack of mobility was the perfect storm for adhesions to form possibly fusing organs together again.  I’ve tried pelvic floor therapy, which did help with some of the lower pelvic floor pain, but the sharp stabbing/tearing pains remain.

It was so brave of you to have a hysterectomy at such a young age. Are you free of endometriosis now, or are you still haunted with pain and symptoms?

It’s a daily struggle for me.  I’ve recently had confirmation that UC is in remission!!  Yaaaay!! But i’m in a lot of pain from my bladder/kidneys/diaphragm.  The pain has taken me to the hospital a number of times. We first thought it was bladder infections and kidney stones. My cultures always come back negative, and scans show no stones.  Just crazy flank pain attacks with a huge loss of blood and protein. My family has helped me advocate for answers and we’ve been able to eliminate everything regarding the bladder and Ureters thanks to a recent hospital stay in a big city hospital .  

We’ve been able to eliminate endometriosis inside the bladder and ureters.  We are now waiting on a second consultation with a kidney specialist. The ideas swimming around right now as to what It could be are a rare kidney disorder, endometriosis on the outside of my bladder, ureters, kidneys, and large intestine or something called loin pain hematuria syndrome.   Currently the hardest part is not knowing what’s wrong. I’d like to know if what’s happening is going to destroy my kidneys, or if it’s just something that we’ll have to manage the pain for.

In the meantime, how do you cope with the endo pain?

Honestly, i’ve embraced the 80 year old Rachel and live life slowly and carefully.   I draw in help and support from my amazing family. I’m really blessed to be so close and have them fight the good fight alongside me.  I’ve had to swallow my ego, and learn that help has to come from lots of people and not just one. It really does take a village, and i’m super blessed to have the help and support to keep things slow and low for myself.    

What about the UC? How do you manage to keep it under control?

I take my medications as directed, adding the extras when I seem to start flaring.  I’ve been through a few GI dr’s due to them relocating, and my newest doctor and nurse were able to help me understand the importance of enimas.  If ¾ of your large intestine is flared, and you’re only slightly healing from oral medications, suppositories aren’t enough to reach the other 1/4 of your intestine. I was in a cycle of continuous flares due to only using oral and suppositories.  Enimas along with imuran were able to get things back on track. As icky as people find Enimas, USE them! They work!

One of the main reasons I keep reaching out to you is because when I am down, you always lift me up. I have not moved across the country and we still have never met in person but I depend on you. I don’t know how you stay so positive, and I will continue to love you for that. But if I could ask you to give one piece of advice to others out there with chronic illness, what would it be?

When times are hard, reach out to other and do things that make you feel good inside. Don’t save your energy for all the “have to’s”, use that energy for self care.  Visit friends and family, go for a walk or swim, and don’t give into the internal self critic of ‘you should be doing this or that instead’. Take every single person’s offering of help that comes your way.  One way that people help me if they don’t live close, is a simple text a few times a week, checking in to see how i’m doing is awesome. It gives me the opportunity to check in with myself and see if i’m struggling emotionally or not.   If you’re not strong enough to find the words to communicate with a dr, ask a friend or family member to join you on appointments. If your ‘helper’ knows what’s happening to you and your body, they can offer support and ideas to the dr or help you remember what you really wanted out of the appointment.  

There are very few people who truly understand what it’s like to go from dr to dr to dr and all of them struggling to find answers. I’m so grateful to have you, Anusha, in my life!  You help make it a less lonely place to be. You’re not only empathetic and understanding, but you can make a girl laugh when shit gets real scary!

Hopefully all my readers have found a little bit of clarity through this interview. Please leave us any questions or comments as both Rachel and I are here and eager to help others.