Where did my Entyvio go?

What happens when your biologic starts wearing off

Those of us with autoimmune diseases know our bodies so well, and while we often cannot explain what we are feeling, we know something is up. Starting in February I had my three loading doses of Entyvio, and then experienced my first 8 week interval without the medication. So in theory I have had 4 doses of entyvio. I can honestly say I started feeling results after the first or second infusion, and was excited that things were moving in the right direction.

But this last 8 week period has been a doozy. After 5 weeks I could start to feel some symptoms (or maybe they were side effects) of the drug. At first my GI was concerned that the extreme bloating around week 5 (see my post about my belly!) was a side effect of the medication. She had me do a calprotectin test (ugh, thats a blog post in itself), then another, and I still havent heard back from her so, thats a thing. Meanwhile, I reached out to the lovely folks on my facebook group and they guided me towards activated charcoal pills. Folks, I kid you not this stuff is amazing! It is designed to work with the bacteria that converts certain foods into gases such as methane, and it absorbs the gases. While it doesnt act on any cytokines or inflammatory factors it definitely reduces the bloating by way of the gases.

Unfortunately around week 7 the charcoal was no longer doing the trick; there was more happening than just bloating. First it was upper colon pain, which I was scared it may have been liver pain as they havent ruled out PSC yet and this pain was very prevalent back in November during my diagnosis. So I went to the hospital, and my blood work was all normal (CRP levels to come, and no Calprotectin obviously). They discharged me, and that night I started developing radiating leg pain, and joint pain. I became so tired, I didnt know what to do.

One day before my next infusion (yesterday) I was scheduled to hop on a plane and get back to Vancouver from Ottawa (thats across the continent for those of you not familiar with Canadian Geography) and that didnt happen. Just as I was approaching the airport my nausea became so bad, and I wasnt sure I could make it through the airport without either hurling or fainting. My first instinct was to call the Innomar clinic that administers my Entyvio infusions and asked them if they could fit me in that night or the next morning. They were so kind! They squeezed me in for this morning, and contacted the Vancouver site to let them know I would be having my infusion in Ottawa.  I also had to call the Vancouver General Hospital to let them know I wouldnt be back in time for my MRI (for my PSC) and they too were very lovely. They rebooked me somehow for next week.

Today I received my infusion, met the nurses that will be administering my infusions come September when I move back to Ottawa, and have done literally nothing but sleep all day!!! I mean, all day! Pretty sure I have been delirious for days, and may have even attempted to write some emails that I cannot remember (lol). The pain has not gone away, but the leg pain has, and the joint pain is lessening. Hopefully this is a lesson learned, and something tangible I can take back to my GI to optimise my treatment frequency.

Travel Symptoms for UC and Endo

I have mentioned in the past that the diet for endometriosis and the diet for Ulcerative Colitis are quite contradictory to one another. In the years that I only knew about my endometriosis I knew exactly how to avoid getting endobelly – the distended belly that results from inflammatory foods such as carbs. But once I was diagnosed with UC, I noticed that sometimes the distended belly is not from endo but in fact from some bodily confusion where my colon decides to just hold tight to my “food” for a while before releasing it. Here are my observations:

As my food moves down the descending colon I think it gets stuck there for a bit and is painful to say the least, due to the massive pressure it puts on my body. Then as the bulk finally moves into my sigmoid colon it is painful  – like actually painful – and very speedy. As I am often curious how healthy my bowel movement is (cus who doesnt look in the bowl after a good one?!?) the size of the bowel movement is much smaller than the size of my swollen belly before everything came out, which leads me to believe there is a lot of swelling and edema (water retention) happening as well.

Last week as I was preparing for my trip to Atlanta I had a bit of (what I thought was) endobelly. I thought, “maybe I should do one of those before and after pics to share with people”. But I also forgot that traveling also makes me bloated. After three days (below, left) my belly was quite the basketball. I waited and waited,… no relief until finally I landed back in Vancouver last night (5 days later) and my body felt at ease (below, right). Needless to say there are endless trips to the bathroom to go from the left image to the right image, but man does it feel good when its out.

I have NEVER shared these types of photos before so Im a little nervous at the criticism I might get, but knew in my heart it was time to share this. I hope this makes others feel less alone with these symptoms.

Exhausted: Mentally but not physically

Mental exhaustion from endometrial excision surgery

I havent been online in almost a month now, and for anyone who is keeping up with my journey I owe you a big update.

4 weeks ago I had an excision surgery to remove (not cauterize) endometrial lesions from anywhere they could find it. The surgery was very successful – removal of endometriosis from my bladder and tons from my colon, exceptional amounts on my ovaries (with an ovarian suspension) and up along my diaphragm and ribs – with healing slow but steady. A few days after my surgery I also had an entyvio infusion which I was so scared about but didnt end up being as debilitating as they normally are.

surgery

Circa 4 weeks later I now have severe abdominal pain and I dont think it is from the surgery. In fact, I think minus the runny poops, I might be in a UC flare. Luckily I was scheduled for a follow up with my GI today and she wants to rule out c-diff. Im fairly certain its not an infection and I strongly believe – knowing my body so well now – that it is UC related and infusion related. My theory is that while I finished my three loading doses this is the first time my body has gone without an infusion in over two weeks. Once she rules out C-diff I think it is likely she will push my entyvio infusion to next week, making it a 4 week gap rather than an 8 week gap. In fact she says with entyvio its not uncommon (or becoming more common) that people need the infusions at 4 weeks rather than every 8.

The biggest thing for me right now is that Im exhausted. Physically; not mentally. My brain wants to put me on my running shoes and go for a run, whereas my body can barely withstand writing this blog. Keeping in mind that I also cant take any NSAIDS due to the UC, it means my body is working off the inflammation is truly the most natural way possible. As if I needed to withstand more pain?!? For those of you who are curious though, I did confirm with my doc that there is a growing prevalence of those with UC who flare up with NSAIDS. I thought it might be a myth and in fact cant be confirmed with me yet as I have too much going on in body at once. I just dont want to take the chance either.

So long story short, I made it through the surgery, I held off this somewhat predictable flare for almost 4 weeks and I think without the diarrhea and some infusions I might be able to battle some of this pain. Now… the efficacy of the surgery needs to prove itself to me.

Gonna hold off on updates until next week as I think I will safely have some clear answers by then.

The Tango Between Two Diseases

Symptoms from Endometriosis and Ulcerative Colitis

I feel like my endo and my UC have been doing the tango, competing for first prize. On days when my UC  tends to be on the quiet side, my endo craves to steal the scene and do a few painful twirls on my diaphragm. Then they swap back and forth – never a dull moment! For those of you who have both diseases and potentially have diaphramatic or thoracic endo pain, you know that the localized pain is very similar in location and intensity to your UC pain. Lets see if I can explain with an image…

female pain points v2

The image above is a great depiction of the internal female body, and the areas that are most affected by the two diseases. I have tried to do a mock up of where my pain areas are (pink = endometriosis; orange = ulcerative colitis). As you can see the areas that I feel endo pain are very similar to the areas I feel UC pain. For instance, I have endometriosis on my ovaries (not shown here) and adhesions on my left ovary which impacts my left sciatic nerve. However, after my entyvio infusions or during extreme UC flare up, I feel intense joint pain in both my left and right hips. While my diaphragmatic endo pain appears to be quite higher up than the upper colon pain these areas truly are close together when you are trying to discern one from the other.  And lastly, pain in abdomen and areas neighboring the abdomen caused referred pain up to the right shoulder.

Note: I also dont have a gallbladder so this is why there are complications between my liver and my colon, and why I take bile salts when I remember to.

Some good news though!

  1. Today I had my very first firm, intact, pain free poop in 3 months!A shout out to the ‘Ulcerative Colitis’ facebook group who confirmed that it IS possible to start feeling and seeing results after only two loading doses of Entyvio. I was worried at first because after both first and second loading doses I was feeling abdominal pain that eventually subsides; with the last loading dose causing extreme joint pain. When my UC joint pain subsided I was unfortunately left with sciatic pain from my endo,… but whose counting really?!? *insert eye roll here*.
  2. I am on schedule for my excision surgery on March 12th with one of the best doctors in the industry. It will be a long and drastic procedure that will aim to remove endo from the typical places as well as up near my diaphragm. The only thing that could stop the surgery from happening is if I have a flare up but Im doing everything in my power to prevent that from happening! I am so excited!
  3. I need a third positive thing…oh.. i know! I just added eggplant in my diet!

 

Alcohol and Inflammation: One Size Fits All?

How alcohol effects my Ulcerative Colitis

Pre-emptive to my trip down south next week I thought I would write about my adventures with alcohol since my UC diagnosis.

I begin this by saying alcohol and endometriosis are ALSO not friends so I am not exactly being smart by having alcohol in the first place. But, we all have our days. Ok so, remember that I was diagnosed with UC just before the holidays and while I was smart about not mixing alcohol with high doses of prednisone, I knew there were going to be occasions when I would try a sip of this or a sip of that. Here’s what I conclude:

  1. Beer – I generally like Lager’s anyways so never had to deal with too much bitterness or too high of an alcohol content. Nevertheless, beer seems to sit ok with me. The bubbles dont make me too gassy, and the volume is ok if I drink it slowly.
  2. Bubbly (champagne, prosecco) – this is not good. It seems to have larger, tougher bubbles that I can feel even before it gets to my stomach. It makes me very gassy, and it makes me feel like I am having hot flashes. This one is especially tough for me as I am,… well… Let’s just say prosecco is my go-to.
  3. Wine – I have this nasty suspicion that wine may be been one of the straws that broke the camel’s back for me, so I havent tried it yet. Red or white, they both seem a bit too acidic for my belly now. And I will say I had a sip of wine over the holidays and it didnt taste right to me. Maybe thats my body’s way of saying ‘dont you dare’.
  4. Hard liquor – I have so far had gin, and I did ok with it. But I anticipate a lot of rum in my near future and I am praying to the stomach gods that it sits well.

 

Its not that I need alcohol, but I sure do miss it. And I want to be able to have a drink here and there, so its best that I know what works for me. What works for you?

***post Punta Cana vacation ***

Ok ladies and gents I now have the full report on what sits and what doesnt…

4. Hard liquor continued – Gin sits quite well BUT the bubbles from tonic or soda DO NOT. Therefore if I have gin I have to have it with something more gentle like juice which is gross. Vodka is wonderful! You cant have it with soda but you can have it with water and lime. Yum. And… you can easily swap it out with tequila which somehow by some miracle also sits well if you DO NOT do shots with it. NO SHOTS! Rum… so good.. in Bahama Mama’s, in Daquiries, in Pina Coladas. Its beautiful in mixed drinks but NO SHOTS! haha… The moral of the story for all liquor is no bubbles, and no shots! it must be masked in something subtle.

Its just the beginning but it feels like the end

Emotionally Coping with Both Endometriosis and Ulcerative Colitis

One of the most frustrating things about this journey is I must have had Ulcerative Colitis for years without realising it – or calling it Endometriosis – but now that its here, its like it wont go away. And I keep telling myself that I cant give up because its just the beginning, but some days (like today) are harder to keep the glass half full. I wake up anticipating that things will be bad, am happy that they are considerably manageable, get angry when I feel full but cant poop, feel perplexed when drugs arent working, and then feel exhausted from feeling all of these emotions.

I found a support group for IBD here in Vancouver and will be attending a session next month. Im excited for it although I wish there were more people on the facebook support groups who were willing to ‘support’. I had my challenges with the endometriosis facebook groups, cant seem to find many for UC, and the luck of finding one for both were so slim I created one myself. Just me babbling on there like I do here, hoping someone is readying and saying ‘amen sister!’.

I find the one thing that keeps me from exploding is taking 5 minutes to just turn off the world, breathe, forget about what each part of my body is feeling, and just let go. 5 minutes. I dont allow myself much more than that these days for fear I will fall into a rut, but that 5 minutes is golden. If you are reading thing, I encourage you to do the same.

For those of you who are into, or thinking about, essential oils, I plan on posting something on here tomorrow but let me tell you my new best friend is lavender oil, the ZenGest from DoTerra and the ‘spray the bitch away’ from Frankie and Myrrh (sold on Etsy).

Last day of Prednisone

IMG_4864It has taken a lot of effort to do anything today. I woke up early feeling good, and not even two hours later I HAD to take a nap…. for like 3 hours. Is it considered a nap if its for 3 hours, I wonder?

Anyways, its nearing the end of the day and I wanted to at least celebrate a little bit. Because you see, I have taken my last prednisone pill! I got sick almost two months ago, with steroid drip given constantly for at least 7 days at the hospital and since then I have been on the prednisone taper.

For those of you who are not familiar with this concept, Prednisone is a very addictive steroid given for the treatment of inflammation such as that caused by UC. Due to its addictive nature you must not stop the drug cold turkey but instead lower the dosage gradually over the course of several weeks. So for instance I was discharged from the hospital on 8 x 5mg prednisone a day. I continued at this dose for a week and a half and then I was told to decrease by one pill per week. So the following week I had 7 x 5mg per day; the following I was on 6 x 5mg per day… and so on. Today I took my last 1 x 5mg pill per day!

I endured almost every side effect one could have with prednisone (adult acne, achy joints, puffy face, thinning skin, flushing) and I must say, I took it like a champ. But today, I am happy there are no more. Dismissing the fact that I am not in remission, I am glad to be removing the prednisone side effects from my life (although I will miss how naive I was to my inflammation at the higher dosage).

As we continue the journey!…

Too many pills

What a day!

I am finally well enough to talk about what happened two days ago.

As you know, my GI told me she wants me to increase my salofalk dose from 2 pills three times a day, to 8 pills once a day. Mother of goodness, that is a handful of pills. Not to mention the calcium (horse) pill, vitamin D (yes I take three of them I live in Canada), the daily vitamin I take for good measure, and the probiotic.

IMG_4841

On top of that my Endo specialist wants me to switch off my oral contraceptive and replace it with Visanne – the drug with absolutely no positive reviews. In a single day I flooded my body with drugs. No wonder in a matter of 4 hours I started my period … great!… had diarrhea.. and lucky me… vomiting! ugh.

The good news is that as quickly as it came, it went.

I chalk the period up as ‘Visanne just is what it is’. I came prepared for this one. But I was able to get a hold of my GI who said she wants to determine whether the diarrhea and vomiting are from the prednisone ween or from the salofalk. She suggested I go back to 2 pills three times a day (TID) and wait to see if the symptoms persist. If they do, we will need to top me up with prednisone until I am on the Entyvio.

The short of the long: symptoms have gone away so must have just been too much salofalk at once. Lets see what tomorrow brings.

Zucchini Lasagna with non-cow cheeses

I have tried eggplant lasagna but wanted to try something new. Instead I worked my way up to zucchini lasagna. If you have ever made traditional lasagna before this is quite similar with the exception of zucchini slices to substitute pasta. This recipe does call for some cheese but we erred on the side of non-cow’s cheese.

Ingredients:

  • 1 can tomato sauce or homemade sauce of your choice
  • 5-6 zucchini
  • 1 cup cottage cheese
  • 1 cup goat cheese
  • 1/2 cup vegan mozzarella cheese
  • seasoning
  • Parmesan cheese (optional)

Preheat your oven to 375F.

Combine cottage cheese, goat cheese and vegan mozzarella in a bowl and mix in seasoning to taste. Put aside until needed.

Slice the zucchini into as thin slices as you can. Line the baking dish with a thin layer of sauce (your choice – meat or otherwise). Make one layer of zucchini slices. Top the zucchini with the cheese mixture and then top with sauce. Repeat this until you have 2-3 layers of each.

Top the last layer with Parmesan cheese. Bake in the oven for 30 min covered and 10 min uncovered.

With zucchini slices in place of pasta this is a more soggy alternative, so you will want the lasagna to set for a while until serving.

Power Breakfast

Because rice is my saviour, I make these power rice bowls when I need a boost of flavor and protein. You can mix the ingredients up as much as you’d like.

If you have endo you can use the blend I made before – a long grain rice that contains some dried vegetables – but if you have UC its best you stick with plain rice.  A few spoonfuls piled with cooked sausage (optional), avocado and a fried egg is the perfect way to start the day.

Ingredients:

  • Rice – long grain blend or plain white rice
  • 1 teaspoon cooking oil
  • 1 egg
  • half avocado
  • 1 sausage (optional)
  1. In a small sauce pot, cook the rice as per instructions on package.
  2. (if you are adding sausage you should start cooking now)
  3. In the meantime, slice up half an avocado and set aside
  4. In one frying pan, pour in oil and place on medium heat
  5. Once hot, cook your egg to you desire.
  6. Once rice (and sausage) are cooked, place a heaping of rice at the bottom of the bowl. Layer with sausage and avocado, and top with fried egg.
  7. Season as needed.
IMG_3935

If you dont eat rice Im sure this could be well substituted for quinoa or lentils.