I'm officially on Humira now. A part of me is sad I couldn't find relief naturally... but I'm already getting over it. I'll still pursue healthy options in my diet and other non-pharmaceutical options because they are simply the right thing to do overall and in the long run. Really hoping this puts me into remission and I can broaden my diet options. Somethings I'll never be able to reintroduce like most dairy or stupid amounts of sugar. It would be nice though to be able to join in most meals with my family and relieve a lot of that pressure and stress from my wife. Just because I started these meds doesn't mean I'm all better. Best case scenario is in 4 weeks I should see significant improvement but it could take longer. In the mean time I'm still very inflamed thus all the natural methods will aid in ensuring I'm getting proper nutrition.
I'm still loosing weight which is a little scary. Down to 159, was at 161 my last office visit, and 163 the time before that. I'm really hoping the milk kefir helps me absorb nutrients better. That's kind of the whole point of it so we'll see. I'll get into that in another post though.
Humira is a self-administered injected drug. Went in to the GI and they have a physicians assistant show you how the auto injector pens work. They answer all your questions, show you how to do it, and then you do it. I'm a super big wuss when it comes to needles so this is a big deal. My wife says I'm worse than the kids when it's time for our flu shots! She's pretty much right. However these auto injectors are pretty fool proof. Just hold it properly, push the button, hold everything tight until it goes yellow... done! Man it hurts but only for like 15 seconds.
Gave myself two injections at the doctors office. Then two more before bed. At the office I administered them into my belly but that night I did the leg. I think the leg is better. Holding the pen against your belly properly is awkward and later that day when laughing it made it sore. So far no real soreness in my legs and holding the pen was much easier. I don't think either location hurt less.
Tuesday, November 25, 2014
Saturday, November 22, 2014
Emotional Rollercoaster
Met with the new GI I was ranting about two posts ago. My wife was there this time. It went much better this visit. If I had to guess it was that she was having a... better day... I was having a better day... and I let her do most of the talking. Very rarely have I found specialists open to discussion or challenges. Last visit was the last visit on a Friday; I'm thinking that had a part in all of this. Anyway; lets not dwel on that.
She explained the different 'paths' you take with pharmacuticals. This is why I really like her; she explains these things where other GI's are just like "here, take this..." without saying why or what the next step is or explaining the pathway.
Path one was what I was on and it's not working. You flare up, you take predinsone, you get into remission, and they figure out which pill will keep you in remission. Typically start with salfasalazine or a mesalamine like Lialda orAsacol Apriso. (Asacol is no longer available)
An offshoot of that path is if you're having a very bad flare, like you end up in the hospital, they put you on IV steroids. Get you into remission. Then get you on a meslamine or immune suppressant like 6MP
When immune suppressants like prednisone and 6MP don't work you have to go down a different path. These are pretty severe cases like cronic ulcerative pancolitis. None of the above seems to work, you're constantly inflamed and suffering from symptoms. That's where I'm at. Salfasalazine stopped working, predinsone stopped working, and there's no real point in even trying meslamines as it's all down that same path... won't work.
Next path is 'biologics'. These are intravenous drugs that both get you into remission and maintain it. There's Humira, Remicade, Cimzia, Tysabri, and a new one about to come out Vedolizumab. Some are self administered injections and other's are "infusions" done at a clinic via an IV. These things are crazy expensive and I'm about to start on Humira.
So I was perscribed Humira. I go to my perscription drug provider and it takes me a few days just to figure out this:
Humira Starter Kit:
Total $10,126
Approved Amount $8,692
After Deductible is met (20%) $1,738
Humira monthly 40mg pens
Total $2,987
Approved Amount $2,471
After Deductible is met (20%) $465
Thankfully I've hit my deductible this year (which is kinda crazy itself.. we've spent many, many, thousands of dollars on direct and indirect medical expenses). Now almost all of the manufacturers of these drugs have some sort of assistance program. Some are better than others and they all have different requirements and procedures for getting approved. There are also programs out there affiliated with churches and other non-proffits to help. We spent many, many, days trying to navigate them, figure out a path to pay for this, and it's a logistical nightmare.
Humira Protection Plan is the assistance program for Humira and pays up to $2,000 for the starter kit and $700 per month. I'm registered for 5 years on the plan.
My provider does not accept the Humira Protection Plan card; you have to check with your provider to find out. They will accept it next year starting JAN 1 but won't accept it early. However my deductible resets JAN 1 so taking $2,000 off $8,692 doesn't exactly make it affordable. They are pretty much asking me to buy a car and then take on another mortgage payment for the rest of my life!
So I called Humira back for like the 10th time and they said they have a reimbursement plan for just such things. It's a totally separate process but the same numbers... $2,000 then $700/mo. However I have to order Humira, pay out of pocket, send them in a bunch of info, and they will reimburse me. I ordered the starter kit and received it yesterday. Filled out all the paper work and submitted it yesterday. Still waiting to hear back from them but at least I got the meds and I'm ready for Monday. That's when I go in and learn how to give myself the shot.
If this all works as it's been explained... My provider will start accepting the Humira protection plan card JAN 1 2015. So starting next year I *should* get $700 off the price per month. So the first month will cost me $1,771. Next month will cost $1,771 BUT I hit my deductible at $2,500 so I'll only pay 20% of the remainder... so like $145? That would then mean the following month would be $465 but the Humira protection plan should cover that. Still a lot of money to spend right at the beginning of the year but at least we can manage this somehow.
REALLY hoping this financing all works the way it sounds! Oh... and that this drug actually works =P No garuntees on either!
Anyway... we've all shed more than a few tears figuring this all out. The blood recently is probably a reflection of my stress. I've been on the phone for hours every day for a week trying to figure this all out meanwhile still do my job and be productive at home. Nobody on the phone can give you a freak'n straight answer (except the Humira people, they are awesome, but they don't know the details of my provider). After all this... I think peoples opinion on "big pharma" should be re-evaluated! I'm so mad at my prescription drug provider! They are doing very little to really help me, the people on the phone are usually incompetent or borderline rude, I hate their strong-arm tactics to compel you to use THEIR pharmacy, and I get transferred no less than 3 times every time I call in and they all ask the same damn questions! My provider won't allow my local pharmacy to prescribe me 90 supplies of anything. If I want a 90 day supply I have to order through THEIR pharmacy. Ya know what? A) I want to support my local pharmacy and B) I won't order from them out of spite now =P
On the other hand... Humira has gone well out of their way to help people like me, I call in to a phone number and after 3 clicks I'm talking to a real person, they know WTF they are talking about, very professional, and actually help me!
I've looked into other drugs they wanted me to take too. They are all this damn expensive, some more, some a little less, but none of them affordable. I've pursued a few of them and the 'discount' plans either don't take enough off to make it affordable or my damn provider wouldn't accept them. I never understood how people could ever choose between their prescriptions and their needs... I get it now... I totally see how that's a reality for many people. I had no idea how expensive this stuff is until I was faced with it.
Monday I take my first doses. I start at a high dose then over the coming weeks I taper down to a maintenance dose. This should get me into remission and then keep me there. We're all praying this works. I do intend to keep pursing some natural regiments to help promote good health and healing however I truly hope to get into remission and enjoy a more broad diet. Most of all... I'm sick of being sick... and ready to rediscover what "normal" is again. This December it will be a year of constant flare up symptoms.
She explained the different 'paths' you take with pharmacuticals. This is why I really like her; she explains these things where other GI's are just like "here, take this..." without saying why or what the next step is or explaining the pathway.
Path one was what I was on and it's not working. You flare up, you take predinsone, you get into remission, and they figure out which pill will keep you in remission. Typically start with salfasalazine or a mesalamine like Lialda or
An offshoot of that path is if you're having a very bad flare, like you end up in the hospital, they put you on IV steroids. Get you into remission. Then get you on a meslamine or immune suppressant like 6MP
When immune suppressants like prednisone and 6MP don't work you have to go down a different path. These are pretty severe cases like cronic ulcerative pancolitis. None of the above seems to work, you're constantly inflamed and suffering from symptoms. That's where I'm at. Salfasalazine stopped working, predinsone stopped working, and there's no real point in even trying meslamines as it's all down that same path... won't work.
Next path is 'biologics'. These are intravenous drugs that both get you into remission and maintain it. There's Humira, Remicade, Cimzia, Tysabri, and a new one about to come out Vedolizumab. Some are self administered injections and other's are "infusions" done at a clinic via an IV. These things are crazy expensive and I'm about to start on Humira.
So I was perscribed Humira. I go to my perscription drug provider and it takes me a few days just to figure out this:
Humira Starter Kit:
Total $10,126
Approved Amount $8,692
After Deductible is met (20%) $1,738
Humira monthly 40mg pens
Total $2,987
Approved Amount $2,471
After Deductible is met (20%) $465
Thankfully I've hit my deductible this year (which is kinda crazy itself.. we've spent many, many, thousands of dollars on direct and indirect medical expenses). Now almost all of the manufacturers of these drugs have some sort of assistance program. Some are better than others and they all have different requirements and procedures for getting approved. There are also programs out there affiliated with churches and other non-proffits to help. We spent many, many, days trying to navigate them, figure out a path to pay for this, and it's a logistical nightmare.
Humira Protection Plan is the assistance program for Humira and pays up to $2,000 for the starter kit and $700 per month. I'm registered for 5 years on the plan.
My provider does not accept the Humira Protection Plan card; you have to check with your provider to find out. They will accept it next year starting JAN 1 but won't accept it early. However my deductible resets JAN 1 so taking $2,000 off $8,692 doesn't exactly make it affordable. They are pretty much asking me to buy a car and then take on another mortgage payment for the rest of my life!
So I called Humira back for like the 10th time and they said they have a reimbursement plan for just such things. It's a totally separate process but the same numbers... $2,000 then $700/mo. However I have to order Humira, pay out of pocket, send them in a bunch of info, and they will reimburse me. I ordered the starter kit and received it yesterday. Filled out all the paper work and submitted it yesterday. Still waiting to hear back from them but at least I got the meds and I'm ready for Monday. That's when I go in and learn how to give myself the shot.
If this all works as it's been explained... My provider will start accepting the Humira protection plan card JAN 1 2015. So starting next year I *should* get $700 off the price per month. So the first month will cost me $1,771. Next month will cost $1,771 BUT I hit my deductible at $2,500 so I'll only pay 20% of the remainder... so like $145? That would then mean the following month would be $465 but the Humira protection plan should cover that. Still a lot of money to spend right at the beginning of the year but at least we can manage this somehow.
REALLY hoping this financing all works the way it sounds! Oh... and that this drug actually works =P No garuntees on either!
Anyway... we've all shed more than a few tears figuring this all out. The blood recently is probably a reflection of my stress. I've been on the phone for hours every day for a week trying to figure this all out meanwhile still do my job and be productive at home. Nobody on the phone can give you a freak'n straight answer (except the Humira people, they are awesome, but they don't know the details of my provider). After all this... I think peoples opinion on "big pharma" should be re-evaluated! I'm so mad at my prescription drug provider! They are doing very little to really help me, the people on the phone are usually incompetent or borderline rude, I hate their strong-arm tactics to compel you to use THEIR pharmacy, and I get transferred no less than 3 times every time I call in and they all ask the same damn questions! My provider won't allow my local pharmacy to prescribe me 90 supplies of anything. If I want a 90 day supply I have to order through THEIR pharmacy. Ya know what? A) I want to support my local pharmacy and B) I won't order from them out of spite now =P
On the other hand... Humira has gone well out of their way to help people like me, I call in to a phone number and after 3 clicks I'm talking to a real person, they know WTF they are talking about, very professional, and actually help me!
I've looked into other drugs they wanted me to take too. They are all this damn expensive, some more, some a little less, but none of them affordable. I've pursued a few of them and the 'discount' plans either don't take enough off to make it affordable or my damn provider wouldn't accept them. I never understood how people could ever choose between their prescriptions and their needs... I get it now... I totally see how that's a reality for many people. I had no idea how expensive this stuff is until I was faced with it.
Monday I take my first doses. I start at a high dose then over the coming weeks I taper down to a maintenance dose. This should get me into remission and then keep me there. We're all praying this works. I do intend to keep pursing some natural regiments to help promote good health and healing however I truly hope to get into remission and enjoy a more broad diet. Most of all... I'm sick of being sick... and ready to rediscover what "normal" is again. This December it will be a year of constant flare up symptoms.
Sunday, November 9, 2014
Kefir and Prednisone
Symptoms are getting stronger again. If I had to guess it was a few days after dropping the dosage of the hydrocorisone suppositories from 2 a day to 1 a day... but it's just a guess. It's funny... I was actually starting to feel better a couple weeks ago, I messaged my GI saying I was marginally better but not where I want to be, and then like the next day... bam... back to blood and urgency. Msg'd her again and she prescribed prednisone again. Starting at 40mg and tapering from there every week. Hasn't gotten any better and in some ways worse. Passed a lot of blood the last 2 days.
I'm pretty excited to ferment my own kefir and try that. You soak these 'kefir grains' in milk or water and let it ferment a day or three. Then you drink it. I know... sounds crazy right? It's really not. People have been fermenting food and drinks for centuries. One I'm sure you've heard of and even ate is sour kraut.
The 'grains' are actually microrganisims and their food which is just sugar and yeast. It's not like an wheat or corn grain. It's a little colony of probiotics. When you ferment your kefir they multiply, feeding on the sugar in the liquid, breaking down compounds into more simple elements. You're left with a super food packed full of live probiotics, amino acids, and other vital nutrients.
I'm going to start with almond milk kefir. I will try regular milk kefir soon though. However I have to ferment it longer to make sure all the lactose is consumed. See the bacteria feeds on the sugar, which in milk is the lactose, so if you let them fully mature they consume almost all of the lactose. Even if you're lactose intolerant like myself you can drink milk kefir.
Meeting with my GI again on Monday. Yeah; the one I complained about last time. I know she won't have anything I want to hear... just going to push the next class of drugs I can't afford; Remicade and Humira.
I'm pretty excited to ferment my own kefir and try that. You soak these 'kefir grains' in milk or water and let it ferment a day or three. Then you drink it. I know... sounds crazy right? It's really not. People have been fermenting food and drinks for centuries. One I'm sure you've heard of and even ate is sour kraut.
The 'grains' are actually microrganisims and their food which is just sugar and yeast. It's not like an wheat or corn grain. It's a little colony of probiotics. When you ferment your kefir they multiply, feeding on the sugar in the liquid, breaking down compounds into more simple elements. You're left with a super food packed full of live probiotics, amino acids, and other vital nutrients.
I'm going to start with almond milk kefir. I will try regular milk kefir soon though. However I have to ferment it longer to make sure all the lactose is consumed. See the bacteria feeds on the sugar, which in milk is the lactose, so if you let them fully mature they consume almost all of the lactose. Even if you're lactose intolerant like myself you can drink milk kefir.
Meeting with my GI again on Monday. Yeah; the one I complained about last time. I know she won't have anything I want to hear... just going to push the next class of drugs I can't afford; Remicade and Humira.
Thursday, October 9, 2014
Venting Rant on "Specialists"
Went last FRI to see a new GI at the same clinic. She came recommended by someone else suffering worse than I and this GI really helped her. I dislike her as
much as I like her.
The Good: She explained some things better then any of the last 6 GI's I've seen.
Apparently my pancolitis (severe case of ulcerative colitis where the entire colon is afflicted) coupled with the fact that prednisone does not put me into remission means I have a very serious case. Since I'm not responding to full dose of sulfasalazine (3 pills 3 times daily) and that prednisone isn't putting me into remission she said Lialda and 6MP is pointless. I nearly lost it and tried my best to not blow up but asked why her colleagues were trying their best to get me to take them and she said "I don't want to argue about that..." fine... so what now?
Given how well I responded to cortisone suppositories last time she said she's seen several cases where treatment of the colon can go well but the rectum still remains inflamed and causing lots of symptoms. (In my research I found there's actually a name for this: Ulcerative Proctosis) In those cases she explained no pill is going to fix the rectum but the suppositories will. I'll be on full dose of sulfasalazine + suppositories for 2 weeks and see how that goes. We both feel there's a good shot at remission here. Failing that we'll add prednisone on top.
Failing that...it's on to the next class of drugs: immune suppressants. Again... getting conflicting information... from the same person... if prednisone (an immune suppressant steroid) didn't work then why on earth would the other immune suppressants?
The Bad:
I expressed my frustration that her colleagues are saying one thing and she's saying another and we argued about it. She kept pointing to her computer screen saying all the other doctors notes are right here and it's consistent with what she's saying. Too bad that medical file doesn't have every conversation I've had with other GI's which is where the majority of this conflicting advice was given.
Typical arrogance I get with most specialists (not just GIs) and she was a little rude about mentioning a couple times how much time we're spending on this visit.
I had written down about a dozen questions I wanted answers too. This was because the last GI had been seeing there was really into hearing himself talk and by the time he shut up and let me get a word in I had forgotten most of my questions. I handed her my list and asked if we could go over these. She looked over it for no more than 10 seconds saying "No, No, Yes, No... ok well..." handed me back the questions then said "candida is an internet myth, I have candida, you have candida, everyone has it." I explained "Yeah, we all have it... my question was about overgrowth?" She blew it off again. So I pressed on asking then about an imbalance of good bacteria, bad bacteria, and gut flora. She at least admitted it MAY help some people with a less severe case but wasn't going to bother with that for my case.
Then I brought up one of my other questions about using a nicotine patch in conjunction with my pharmaceutical treatment. She tried to play the usual card: no scientific evidence or studies. I explained that actually there were and I had read a couple of scientific studies saying the difference between placebo and nicotine use with conventional means was 40% higher. She then went on to explain how this clinic was internationally recognized and that the medical board which oversees them doesn't recognize those results as they weren't good enough and that "...maybe I could find some other clinic that would practice off the cuff things like that but not here."
For now I'm on her regiment and I do agree with it. We both feel it has a good shot at getting me into remission. The ulcerative proctosis was the first real breakthrough in a while. That said I'm scheduled to see a GI at the U of M. for an opinion outside of the clinic I have been going to. After 10 months of this flare up I'm getting rather anxious for some relief.
The Good: She explained some things better then any of the last 6 GI's I've seen.
Apparently my pancolitis (severe case of ulcerative colitis where the entire colon is afflicted) coupled with the fact that prednisone does not put me into remission means I have a very serious case. Since I'm not responding to full dose of sulfasalazine (3 pills 3 times daily) and that prednisone isn't putting me into remission she said Lialda and 6MP is pointless. I nearly lost it and tried my best to not blow up but asked why her colleagues were trying their best to get me to take them and she said "I don't want to argue about that..." fine... so what now?
Given how well I responded to cortisone suppositories last time she said she's seen several cases where treatment of the colon can go well but the rectum still remains inflamed and causing lots of symptoms. (In my research I found there's actually a name for this: Ulcerative Proctosis) In those cases she explained no pill is going to fix the rectum but the suppositories will. I'll be on full dose of sulfasalazine + suppositories for 2 weeks and see how that goes. We both feel there's a good shot at remission here. Failing that we'll add prednisone on top.
Failing that...it's on to the next class of drugs: immune suppressants. Again... getting conflicting information... from the same person... if prednisone (an immune suppressant steroid) didn't work then why on earth would the other immune suppressants?
The Bad:
I expressed my frustration that her colleagues are saying one thing and she's saying another and we argued about it. She kept pointing to her computer screen saying all the other doctors notes are right here and it's consistent with what she's saying. Too bad that medical file doesn't have every conversation I've had with other GI's which is where the majority of this conflicting advice was given.
Typical arrogance I get with most specialists (not just GIs) and she was a little rude about mentioning a couple times how much time we're spending on this visit.
I had written down about a dozen questions I wanted answers too. This was because the last GI had been seeing there was really into hearing himself talk and by the time he shut up and let me get a word in I had forgotten most of my questions. I handed her my list and asked if we could go over these. She looked over it for no more than 10 seconds saying "No, No, Yes, No... ok well..." handed me back the questions then said "candida is an internet myth, I have candida, you have candida, everyone has it." I explained "Yeah, we all have it... my question was about overgrowth?" She blew it off again. So I pressed on asking then about an imbalance of good bacteria, bad bacteria, and gut flora. She at least admitted it MAY help some people with a less severe case but wasn't going to bother with that for my case.
Then I brought up one of my other questions about using a nicotine patch in conjunction with my pharmaceutical treatment. She tried to play the usual card: no scientific evidence or studies. I explained that actually there were and I had read a couple of scientific studies saying the difference between placebo and nicotine use with conventional means was 40% higher. She then went on to explain how this clinic was internationally recognized and that the medical board which oversees them doesn't recognize those results as they weren't good enough and that "...maybe I could find some other clinic that would practice off the cuff things like that but not here."
For now I'm on her regiment and I do agree with it. We both feel it has a good shot at getting me into remission. The ulcerative proctosis was the first real breakthrough in a while. That said I'm scheduled to see a GI at the U of M. for an opinion outside of the clinic I have been going to. After 10 months of this flare up I'm getting rather anxious for some relief.
Everyone Has an Answer
I've seen quite a few gastroenterologist, done lots of my own research, and talked to many people in person as well as online. If you take it all in... everything works and nothing works. There are no straight, definitive, answers. Many times what you hear or read directly conflicts with something else. In fact you'll find cases where someone will contradict themselves! You even get that from your doctors. They will tell you diet doesn't matter, there's no science there, and nothing is proven. Then in the same breath they will say to avoid "trigger foods" and offer up some vague dietary advice. When you ask what are trigger foods and how to find them you'll get some answer like "it's different for everyone", "you just have to figure it out", or they list off a few like dairy, caffeine, and junk food.
I'm not sure which is worse; having no answers or everyone having a different answer. I'll break it down into a few main categories but within each are any number of variations or even blending of several categories.
Pharmaceutical: Prescription drugs employed via pills, intravenous, suppository, or enema. From what I gather the progression is anti inflammatory drugs (ex. sulfasalazine), immune suppressants (ex. prednisone or 6MP), "biologicals" (ex. Remicade or Humira), and finally surgery.
Nutraceutical: High quality supplements in the form of pills and powders. Examples would be Ultra InflamX 360 which is a meal replacement powder you mix up with water and Wellness Essentials which are packs of pills with vitamins, minerals, and amino acids.
Dietary: There's lots of diets out there. These are focused around health, healing, and neutralizing symptoms. Has nothing to do with loosing weight; not that kind of diet =P Some examples are Autoimmune Paleo, Specific Carbohydrate (SCD), GAPS, Low FODMAP, and various offshoots or blending of these concepts. I'm not listing Elimination Diet here as that's a technique not an actual diet.
Health & Wellness: Things like exercise, meditation, medical cannabis, etc.
The only definitive thing I've figured out thus far is that the solution is different for everyone. I haven't figured it out yet for myself.
References:
Biological Therapy Drugs: http://www.ccfa.org/resources/biologic-therapies.html
Drug Classifications: http://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/basics/treatment/con-20043763
Nutraceuticals: https://www.google.com/search?newwindow=1&biw=1280&bih=625&q=nutraceutical&oq=Nutricutical&gs_l=serp.1.0.0i10l10.418327.418327.0.420076.1.1.0.0.0.0.243.243.2-1.1.0....0...1c.1.55.serp..0.1.240.FU73eZN9M9w
Friday, August 22, 2014
Roadtrip During a Colitis Flare Up
A few weeks ago we went on a 12 day on the road. My wife and I were both concerned about being confined to a vehicle for the better part of most days and finding food I could eat. It wasn't without stress around these things but overall it went very well. Only a few close calls, no accidents, and finding food wasn't too difficult.
Not being in a full flare helped a lot. I'm not in remission but not in the worst of a flare. Would never attempt this a couple months ago when I was running to the bathroom 5 to 8 times a day. Knowing when you may have to go soon helps a lot. Sometimes it just hits you with out warning and you have to go... NOW. However other times I can feel it coming. Usually if I eat something... I have to go soon. While this was somewhat helpful in predicting... it was frustrating everyone. I found myself holding back on snacking, especially on the road, when everyone else could.
Finding food was a bit of a challenge. However making my own lunch as needed or packing one along was always an option. It's tough on the road because fast food was out of the question. The only fast food place I ate at once 9was KFC; their grilled chicken was OK.
I eased up on my restrictions which helped as well. My only regret were the spicy chicken wings at one restaurant =P We shared an order as an appetizer. The menu said it was "sweet and tangy"... it was spicy! I ate 5 and regretted it that night and the next morning. We stopped at a couple famous cupcake shops. I ordered the gluten free one at a particular shop not thinking to ask about the other ingredients. A couple bites into it I was like "oh this is amazing! Wait... it's TOO good... it's full of dairy!" I ended up eating half of it and honestly didn't have a bad reaction to it. I've always been quite sensitive to dairy but for whatever reason this time was OK... thank God.
Here's somethings that work:
Thank you to everyone who reads my blog. It means a lot to me and I had no idea so many did. Wish I had posted something sooner; I actually started this a couple days after getting back. However summer is super busy. As soon as we got home we had to remodel one of our daughter's bedrooms for her birthday, get ready for the birthday part, and we also have our entire entryway torn up as that's our current remodeling project.
Not being in a full flare helped a lot. I'm not in remission but not in the worst of a flare. Would never attempt this a couple months ago when I was running to the bathroom 5 to 8 times a day. Knowing when you may have to go soon helps a lot. Sometimes it just hits you with out warning and you have to go... NOW. However other times I can feel it coming. Usually if I eat something... I have to go soon. While this was somewhat helpful in predicting... it was frustrating everyone. I found myself holding back on snacking, especially on the road, when everyone else could.
Finding food was a bit of a challenge. However making my own lunch as needed or packing one along was always an option. It's tough on the road because fast food was out of the question. The only fast food place I ate at once 9was KFC; their grilled chicken was OK.
I eased up on my restrictions which helped as well. My only regret were the spicy chicken wings at one restaurant =P We shared an order as an appetizer. The menu said it was "sweet and tangy"... it was spicy! I ate 5 and regretted it that night and the next morning. We stopped at a couple famous cupcake shops. I ordered the gluten free one at a particular shop not thinking to ask about the other ingredients. A couple bites into it I was like "oh this is amazing! Wait... it's TOO good... it's full of dairy!" I ended up eating half of it and honestly didn't have a bad reaction to it. I've always been quite sensitive to dairy but for whatever reason this time was OK... thank God.
Here's somethings that work:
- Bananas are easy to find. Nearly every gas station has them. Towns along the way have grocery stores, Super Wal-Mart, or Super Target. Buy several and keep them handy. They don't last long though. Toss the peels at every stop or your whole vehicle smells like bananas =P
- Cold cuts are great. They keep well in the cooler for days. The fewer ingredients in them the better. Again it's not hard to find a store with a deli, butcher, or just some in the meat section.
- Mayonnaise is nice to have too for the sandwiches. I use Kraft mayo made with olive oil. Just keep it burred in ice.
- Precooked carrots in snack baggies. They didn't spoil and lasted over a week! So packing precooked food is great.
- Panera sourdough bread was a life saver. My wife found out the starter they use breaks down the gluten. I ate it a couple days before we left and on the whole trip. No major side effects. It's wonderful because it fills me up. Only side effect is my mind feels a little foggy... like when I eat sugar.
- With that bread I could make sandwiches on the road and also bring them when we walked around DC. So if we knew finding UC safe food was going to be a challenge I would pack a lunch and bring it along.
- Listen to your body. Any movement at all in your gut... speak up and say you'll have to go soon. Start planing the next stop and locating the nearest bathroom. Sometimes beggars can't be choosers; I had to use some pretty nasty ones. However I'll take a close call in a gross bathroom over an accident!
- At restaurants don't be shy; ask what's in everything. Sometimes the menu is lacking details or they use fancy culinary words. A lot of restaurants have allergen guides; again just ask. Most of the hotels we stayed at served breakfast. A lot of times there were scrambled eggs. I always had to ask if they had dairy because some did and some didn't. Restaurant menu's lack details on ingredients or use unusual words. A lot of times you can swap sides for steamed veggies even if they aren't on the menu... just ask!
Thank you to everyone who reads my blog. It means a lot to me and I had no idea so many did. Wish I had posted something sooner; I actually started this a couple days after getting back. However summer is super busy. As soon as we got home we had to remodel one of our daughter's bedrooms for her birthday, get ready for the birthday part, and we also have our entire entryway torn up as that's our current remodeling project.
Monday, July 14, 2014
The Red Rollercoaster
Still trying to figure out what causes this but the blood comes and goes. I've talked about it recently and it's still happening. Again the blood was almost completely gone; rarely showing up. This goes on for days and I start thinking "yeah, cool, I must be getting close to remission ... right?"
Then it comes roaring back for days. Frequency and urgency ramp back up. You can help but think "what did I do?" Was it those few weak moments I had bites of food not on the diet? Was it physical stress? Mental or emotional stress? Maybe this time it was because I became sick from something else; a lovely mid summer cold.
I ask people with the same condition and get a myriad of answers. I ask doctors; one says "hmm, maybe it's because your were sick... or maybe the stress" and another says "must be your pills..." and talks about pills for 20 minutes.
In this last case all three happened about the same time. I was naughty and ate a couple of brownies over that weekend. We were working hard on our house, I was up in the attic working in extreme heat, in a lot of physically stressful positions because you have to stand on the rafters not on the sheet rock. Up there several hours both SAT and SUN putting in recessed lighting. Then over the weekend I got a cold (having a runny nose with a dust mask on totally sucks BTW). I hadn't soaked through clothes with sweat like that in... I can't even remember.
With my kidney disease I've known for years that when I get sick my kidneys bleed more, my urine gets dark, and when I get over being sick it all goes back to normal. Now that I'm getting over the cold my urine is lightening up and the bloody stool is resending . Then again I doubled down on my resolve with my diet and its been a week since the physical stress.... so which was it? What helped... if anything?
Nobody knows... and that's the most frustrating about this whole thing... nobody knows. I pay over $200 per visit to ask the so called experts; the only definitive answers you get from this is to take magic pills I can't afford, cheap pills that crush your immune system, or cut your colon out. I talk and read other peoples opinions on how to manage this and you get every answer imaginable. Just started talking to a new doctor who's much more open to non-pharmacutical approaches but I haven't got anything definitive from him yet.
For now I'm still riding the roller coaster. Going to up my sulfasalazine and finish weening off of the prednisone. I really want to try this new doctors regiment; it sounds interesting and I'm ready for a new approach. If I were to draw a line from when I started this to now the overall trend would be in the right direction. Improvement is measurable and evident... it's just the day to day ups and downs that make it hard to FEEL the improvement. Truly is the proverbial two steps forward and one step back... still moving in the right direction just painfully slow.
Then it comes roaring back for days. Frequency and urgency ramp back up. You can help but think "what did I do?" Was it those few weak moments I had bites of food not on the diet? Was it physical stress? Mental or emotional stress? Maybe this time it was because I became sick from something else; a lovely mid summer cold.
I ask people with the same condition and get a myriad of answers. I ask doctors; one says "hmm, maybe it's because your were sick... or maybe the stress" and another says "must be your pills..." and talks about pills for 20 minutes.
In this last case all three happened about the same time. I was naughty and ate a couple of brownies over that weekend. We were working hard on our house, I was up in the attic working in extreme heat, in a lot of physically stressful positions because you have to stand on the rafters not on the sheet rock. Up there several hours both SAT and SUN putting in recessed lighting. Then over the weekend I got a cold (having a runny nose with a dust mask on totally sucks BTW). I hadn't soaked through clothes with sweat like that in... I can't even remember.
With my kidney disease I've known for years that when I get sick my kidneys bleed more, my urine gets dark, and when I get over being sick it all goes back to normal. Now that I'm getting over the cold my urine is lightening up and the bloody stool is resending . Then again I doubled down on my resolve with my diet and its been a week since the physical stress.... so which was it? What helped... if anything?
Nobody knows... and that's the most frustrating about this whole thing... nobody knows. I pay over $200 per visit to ask the so called experts; the only definitive answers you get from this is to take magic pills I can't afford, cheap pills that crush your immune system, or cut your colon out. I talk and read other peoples opinions on how to manage this and you get every answer imaginable. Just started talking to a new doctor who's much more open to non-pharmacutical approaches but I haven't got anything definitive from him yet.
For now I'm still riding the roller coaster. Going to up my sulfasalazine and finish weening off of the prednisone. I really want to try this new doctors regiment; it sounds interesting and I'm ready for a new approach. If I were to draw a line from when I started this to now the overall trend would be in the right direction. Improvement is measurable and evident... it's just the day to day ups and downs that make it hard to FEEL the improvement. Truly is the proverbial two steps forward and one step back... still moving in the right direction just painfully slow.
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