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update

Flex Sig Update

She wasn’t looking for a knight. She was looking for a sword.

– Anon

Today I had a flex sig that was scheduled sometime in September in the hopes of revealing mucousal healing. My labs in August indicated that I was doing well, so we agreed to take a look to prove that. I had myself all worked up thinking that the procedure was going to be done with me awake. Not the case, thankfully. Aside from the computer system going down requiring a temporary result print-out, things went pretty smoothly.

Above is a cropped image of my results. I was still high from the anesthesia when the nurse handed me the results, and I zoned in on the words “in remission.” I said, “does this say ‘in remission’? I will cry.” And, that’s exactly what I did. I blame the drugs.

On Tuesday I will get to speak to my doctor to see if there is anything else I should know and I will update accordingly. For now, I am trying to shake the odd, PTSD-like syndrome I’ve developed regarding flares since my hospitalization in May. I’m trying to just revel in the thought that I’m truly in remission, but I am struggling with believing it. I also know this disease is a sneaky creep that can take me out at the knees whenever it wants. Alas, I have won this battle…you evil pain in my ass.

On Saturday we went to New Hope, PA and I got myself a new vape tank. I love it. It’s so much better than my old vape, but I will keep that one for alternating. It’s nice, but it was time to get something better. I also had a celebratory cocktail, which I shouldn’t have due to LEAP, but this was something I promised myself I would do. I chose to go with a rye-derived vodka because rye was my least reactive grain (see, I was still mindful) with water and a lemon wedge. I also had my first meal out in a long time: shrimp cocktail minus the cocktail. I think considering I was being a bit of a LEAP rebel, I did excellent with my choices.

Until next time…

October 5, 2017 0 comment

Resources Updates

LEAP Phase 4

I’m now on phase 4 of the LEAP program and I’m feeling pretty good. Here’s my phase 4 list:

Turkey 1.8 (10/7)
Egg 1.8 (10/2)
Tuna 1.8 (10/4)
Tomato 1.8 (10/3)
String Bean 1.8 (10/6)
Cucumber 1.9 (10/8)
Grapefruit 1.7 (10/12)
Peach 1.7 (10/11)
Cheddar 1.1 (10/5)
Cottage Cheese 1.5 (10/9 – DCCC)
Yogurt 1.5 (10/1)
Nuts/Seeds/Oils
Sesame 1.7 (10/10 – Tahini)
Black Pepper 1.7 (9/30)
Cayenne Pepper 1.7 (10/13)
Goat’s Milk 1.5 (*SCD*) – Cheddar
Cow’s Milk 1.4 (*SCD*) – Cheddar/Yogurt

I’m excited to reintroduce some of my favorites in this phase and phase 5. I get to have honey soon (phase 5), and I’m really hoping it gets to stick around. I do think that this program was money well spent. It’s time consuming and it requires a lot of dedication, but I am happy to be learning more about my body through this experience. I highly recommend this program to anyone trying to sort out causes of inflammation in their own body.

October 1, 2017 0 comment

Nicotine Updates

LEAP Diet Phase 3 & Nicotine (NRT 2 mos)

***I moved recently, so I apologize for my absence!***

On 8/20/17 I started my LEAP/MRT program. I am about to wrap up phase 2 and enter phase 3. I feel pretty awesome despite how tough it can be to hold off on beloved foods. I am keeping a few notes about questionable foods (raspberries, mustard, and beets) that I am unsure if the response was from external allergens or the food itself. I will retest those again later. I don’t care too much for any of them that I need them right now, anyway.

So, as I enter phase 3, I wanted to say that I would do this program again without a second thought. Yes, it’s hard. Yes, it requires discipline and endurance. But, there is a real improvement and that’s all that matters to me.

Here’s what I can have beginning on 9/16/17:

Coconut 1.6 (9/16)
Turmeric 1.6 (9/17)
Garlic 1.4 (9/18)
Lemon 1.5 (9/19)
Salmon 1.7 (9/20)
Cashew 1.4 (9/21)
Walnut 1.6 (9/22)
Orange 1.6 (9/23)
Eggplant 1.5 (9/24)
Basil 1.4 (9/25)
Honeydew 1.4 (9/26)
Celery 1.4 (9/27)
Cabbage 1.6 (9/28)
Beef 1.7 (9/29)

I actually ordered these beginning with my favorites because last phase I did it based on level. It was terrible waiting to get to peanuts (I will eat an entire container of PB in a day if no one stops me).

Below are some of the foods/meals I had while on phase 2. You can check them all out on my instagram account.

Well, how about that nicotine experiment? Today marks 63 days (or, 2 months) using nicotine replacement therapy. On 10/5 I will have a procedure (flex sig) to determine how I am doing in terms of clinical healing. I am so nervous. I’ve also not told my GI just yet, so let’s keep this between us – haha!

Regarding how I feel in general? There are times I have forgotten to take my meds and had to circle back, terrified. Forgetting the canasa isn’t so much of a big deal, lately. However, forgetting the lialda and the GERD meds scares me. I’ve actually forgotten those both on 2 occasions now and simply took 2 lialda later in the day (too close to my next dose to take a full dose). Maybe it means I will be ready to be on the maintenance dose of lialda (2) instead of the 4 pills?!

Anyway, all that above just means that I feel great. I have forgotten that I have this terrible disease because on most days I feel wonderful. Of course, I still suffer from some secondary symptoms which I can’t totally fault UC for. I am wondering if some are related to the meds. For instance, I have severe dry eye in my right eye mostly. I have to use drops in the morning just to open them without feeling like I am ripping off my eyelid from my eyeball. They get a little red, also. My hair and skin are dryer than normal and I have an itch (that I attribute to the dryness). I do still suffer from occasional fatigue and body aches, but I am able to be active and actually get a real workout in (I’m a lifter). This is great considering I was in the hospital nearly 2.5 months ago wondering if I was dying (dramatic fall).

I’m still vaping, but I have arrived at a solid love for the 6mg dose. In my research, it’s estimated that my old preferred brand of smokes deliver about 2mg per smoke, with about a 90% absorption rate. If I use the vape like I would a cigarette, then at 6mg, I would estimate my absorption at about 1.8 to 2.5mg per 10 minute session. Unfortunately, you have to vape longer and harder than when smoking a real cigarette, but I am simply trying to mimic what I would have smoked in my previous life before the emergence of UC. I want to mention that I’ve been using 100% VG Organic Juice from ECBlendFlavors.com. Totally reasonable prices and I’ve had no issue with their juice. Check them out if you vape.

On my 5-day nicotine update post, I made a little plan. I want to revisit that now that I am 2 months into my experiment.

Come completely off of prednisone successfully (22nd) ✔
Get my LEAP/MRT food sensitivity testing (26th) ✔
Stay on mesalamine (4.8gm oral + rectal) ✔
Stay on the Specific Carbohydrate diet on a fanatic level ✔
Combine my LEAP/MRT results with SCD ✔
Gradually reduce my oral mesalamine dosage in approximately 6 months*
- Reducing 1 pill every month* UPDATE: Maintenance level is 2 pills
Gradually reduce frequency of rectal mesalamine*
- Every other day, every two days, etc*
Gradually reduce nicotine dosage* UPDATE: This is after about 5 years
- - 18mg at the highest level, dropping by 3mg each month or so* UPDATE:
    I’m digging the 6mg
See if I can maintain remission solely on the Specific Carbohydrate diet and LEAP/MRT results*
Redo the LEAP/MRT blood work as needed
- Our bodies change every so many years

That’s all for now, folks. Thanks for reading. I’ll be in touch more now that I have gotten myself situated at the new place!

September 14, 2017 0 comment

Updates

LEAP Diet Phase 2

After struggling through phase 1 with only 2 proteins and 2 veggies (I ate a lot of bananas and pecans), I must say that it was well worth it. I have literally no bloating when I’m done a meal and I’ve lost about 3 to 4 lbs and can finally fit into a bridesmaid dress I need to wear in a month.

The first 3 to 6 days are brutal on phase 1. I actually felt worse for 4 days. On the 5th day everything changed. I felt absolutely wonderful for the first time. I’m not proud of this, but I forgot to take my meds because I felt so much like my old self!

I’m now 3 days into phase 2 and I’ve introduced clams and mushrooms. I’m preparing scallops and broiled cod tonight with fresh ginger and mushroom spinach. Tomorrow I will have some pickled beets!

I seriously feel wonderful. I hope this continues. Here’s the remaining list of phase 2 items I’ll be introducing over the next 15 days:

Shrimp
Lentils
Broccoli
Green peas
Canteloupe
Pear
Raspberry
Olive
Pistachio
Hazelnuts
Peanut
Paprika
Mustard
Oregano

So many favorites coming back into my diet. Hoping they will get to stay!

Until next time, here’s some food I’ve been eating on the LEAP program:

September 1, 2017 0 comment

Updates

LEAP Diet Phase 1

I recently completed LEAP food sensitivy testing bloodwork and today is the first day of phase 1. For the next 10 days, my food options include only the following items:

Codfish
Sole
Lettuce
Spinach
Mango
Grape
Plum
Pineapple
Banana
Avocado
Papaya
Coffee
Pecan
Vanilla
Parsley
Cumin
Ginger
Distilled vinegar
Baking soda

After 10 days of eating practically nothing, I will begin adding in 1 food item a day from 1 section in phase 2 and so on until I’ve completed phase 5 and know exactly which foods cause a histamine reaction for me.

Today has been pretty hard, but I’m hoping it will get easier. Snacking is the biggest issue right now as I don’t have much variety. I’m also not too stoked about the protein options. But, at the end of the day, this is all for the betterment of my health.

I’ve made plum sauce by cooking down about 5 plums in 1/2 cup of water and I made cod tacos using romaine. I have also made little seasoning packets using straws for my purse just in case I need them.

Here’s to hoping for the best possible outcome and the salvaging of my health!

August 20, 2017 0 comment

Nicotine Updates

Nicotine Self-Study (Day 33)

I’m a real rebel with a cause. – Nina Simone

It’s now been 33 days of nicotine replacement therapy use and 27 days off prednisone. I posted recently about the results of my 8/4 GI follow up, but to recap: they think I am close to remission and want to confirm via a sig scope in the next few months.

Since choosing to vape has been such a huge decision for me (as a former smoker), I have spent a good bit of time trying to ensure that I have made the best choice for myself. I figured I would share some key information that I found to ease my troubled conscience.

The first is a study found here: Electronic cigarettes: review of use, content, safety, effects on smokers and potential for harm and benefit that concludes “Allowing EC to compete with cigarettes in the market-place might decrease smoking-related morbidity and mortality. Regulating EC as strictly as cigarettes, or even more strictly as some regulators propose, is not warranted on current evidence. Health professionals may consider advising smokers unable or unwilling to quit through other routes to switch to EC as a safer alternative to smoking and a possible pathway to complete cessation of nicotine use.” While I realize this study is based on assisting current smokers to quit, the findings are still positive for my purposes.

Additionally, I found this lovely article: 9 research studies to silence the vape haters. Here are the 9 points of interest which the article lists studies to support:

Secondhand vapor is not dangerous
Vaping can improve lung function for smokers
Nicotine alone is not powerfully addictive
E-cigarettes are not full of formaldehyde
Sweet vape flavors are not aimed at children
Vaping is substantially lower in toxins than smoking
Vaping can help people quit smoking
Vaping is not a gateway to smoking
Vaping is NOT as bad as smoking

While I feel some guilt about using nicotine to ~~save my life~~ treat my UC, I remind myself often that: had I been prescribed nicotine, I would not feel so poorly about it. And, when I remind myself about prescription medication that was suggested to me, I remember that I made the best choice out of those currently available. I hope to not have to make any tougher decisions down the road, but at least I know my options.

While I am here, let me shout out ECBlendFlavors.com real quick. I’ve been using their 100% VG organic vape juice. Totally affordable with a great selection and fast shipping. I just ordered 4 more flavors in a nice 5ml trial size. They have a custom flavor wizard as well. Give them some business!

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August 15, 2017 6 comments

Updates

Post-HUP Follow-Up

Today was my follow-up appointment at HUP after being released from the hospital on May 26th. We’re probably going to be moving to biologics. The doctor that I’ve been seeing mentioned Humira or Remicade, but I asked about Entyvio. There’s some issue with insurance regarding the process to get covered for Entyvio, but HUP may still be recruiting for a clinical study and I may be able to get in on that.

For some reason my instincts lead me to Entyvio. I was assured that I can have a healthy and possibly natural pregnancy and birth and can even breastfeed on this medication. The doctor mentioned that some studies are actually popping up indicating that babies of Entyvio mom’s are showing increased rates of intelligence. Right up my alley!

So, the official diagnosis at this point is Severe Extensive Colitis which is why we are moving towards biologics. I’m actually excited to have a team of IBD specialists that are research-infused, open-minded, knowledgeable, and really take the time with me to educate and make me feel safe in their hands. I will be meeting the lead doctor – the one I chose based on her resume – in July where we will discuss a bunch of other important things and see where I am headed for my treatment plan.

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My primary doctor is seriously the best. Today I was also able to get my routine UC blood-work back from her office which was really revealing. My Vitamin D is low (26.4) and my Lymphocytes are high (4.1) which is not uncommon with UC. I’m staring on the following supplements: Vitamin D3 @ 5000 IU 1x/D, Magnesium Glycinate @ 150 mg 2x/D, and Vitamin K2 @ 100 mcg 1x/D.

As part of my new gym membership, I took advantage of a chiropractic visit this afternoon and it was great. Once of the areas he realigned is an area associated with the large intestine. Fingers crossed that helped something, haha. I will definitely be going back regularly.

Finally, I concluded my productive ass day with a haircut. I cut and color my own hair and I’ve been tossing around the idea of going shorter for awhile. These are the styles I am entertaining at the moment. I like the two on the right the most. I just cut it a little below shoulder length to try it out for the time being. Top right may look the best on me. What do you think?

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Oh, and my medical alert bracelet from amazon finally arrived. I love it. Much better than the one I returned. I did keep the ID tag from Lauren’s Hope, though. You can see my review here.

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June 15, 2017 0 comment