#pentasa

[supeready]

Nicolas Geiser - Shit Happens, 2017, Pentasa, laque synthétique et acrylique sur toile, 30 x 24 cm

[lifeaccordingtocrohns]

Remission since March 2014.... and here I am flaring. Shit. It’s been a while guys. I’m out of practice!!!

For once I can actually pin down the exact cause of my flare up. This flare happened because I was stung by a bee. Not even kidding. Back in January I was stung and had a “severe toxic reaction” complete with cellulitis.

I had to go on a strong course of antibiotics which was great cos it stopped the infection from killing me (yay) but it gave me the WORST thrush of my life and then fucked my digestive system up.

I went to the doctor on Tuesday and did all the tests and stuff yesterday. My CRP is high and my platelets are low. But my iron is fine so I guess that’s something 🤷🏻‍♀️

Anyway, on prednisone and asacaol and pentasa enemas (which I’m not looking forward to doing) from my GP to try and get it under control before I get in with my specialist.

How are you all doing? It’s been a while huh!

[cannabisrefugee-esq]

The last day of my life was sometime in February, 2013 the day before I was first diagnosed with Crohn’s disease, a progressive and incurable automimmune disease that targets the digestive tract.  As many people with Crohn’s probably know, and as none of us is allowed to think or say out loud, your life is essentially over once you get a Crohn’s diagnosis.  If not from the disease itself then from the treatments.

The disease itself is absolutely horrific and I saw it in my doctor’s eyes when she first broke the news and many times thereafter.  The first doctor in the practice to meet with me, right after diagnosing me said, “You need to get insurance immediately, if not sooner.”  I naively asked if that was because most Crohn’s patients needed surgery; she said no.  I didn’t understand what she meant but I was at the very beginning of my Crohn’s journey and just made a note of it.  I could tell that something was seriously wrong and about to get worse.  I mean, obviously.  If surgery and even repeated surgeries isn’t the worst thing in my future as a Crohn’s patient then what is?  I was already queasy from the Crohn’s related nausea but what she was saying, and not saying, unsettled me.

The second doctor in the practice to meet with me said, “You are an attorney, you are educated, intelligent and have research skills.  You should research this disease and all the treatments available to you.”  I didn’t know what he meant. After meeting with him for several follow-up appointments, when we had developed what I felt was a mutual professional respect, I considered telling him I would be at Starbucks later that evening if there was something he needed to tell me away from the office and away from prying eyes.  What did he mean and why couldn’t he just tell me about all the available treatments himself?  At the time, the research I had done indicated that the conventional treatments for Crohn’s don’t work much; that Crohn’s patients have an extremely low quality of life; and the best “alternative” treatment available was a so-called elemental diet, an enteric feed called Vivonex, a sickly looking yellow fluid that’s meant to be taken through a feeding tube but you can drink it straight if you can stomach it.  I bought several months’ worth at about a thousand dollars a month and tried my best.  It didn’t work.  And despite also taking the prescribed treatments including Pentasa, Entocort and Prednisone, I was getting steadily worse.

I was reading online Crohn’s forums and reading about patients who had been living with Crohn’s disease for decades, as well as the recently diagnosed, and the absolute hell they had been going through with medications, procedures and repeated surgeries that did nothing but make them feel worse in the end.  No pun intended.  Some people found success with different treatments only to find their effectiveness short-lived.  Normally I would concede that those patients who were satisfied with their treatments and with their quality of life would be out living their lives and not commiserating on an online forum, and therefore I would take the published accounts with a grain of salt.  But in this case I noticed a pattern: many of the patients writing on the forums had been getting some relief from their treatments for a time but the treatments eventually failed.  What I was reading were both the treatment failures and the treatment successes in that sense.  Where are the Crohn’s patients who respond well to the treatments forever and don’t feel traumatized, stigmatized, disabled, or have other reasons to publicly talk about it?  I have no idea.  I have never met one.  I understand that they are probably out there somewhere but the truth is, even they won’t know what group they themselves fall into until they die.  Just because they are getting relief from their symptoms right now means nothing.

Eventually, I fell down the rabbit hole of researching medical cannabis for various conditions, including Crohn’s.  Is this what my second doctor had been referring to when he told me to research what was out there?  Cannabis was still illegal in my home state, not to mention outside the “official” accepted standard of care for Crohn’s, so that could’ve easily been what he meant and he just couldn’t legally say it. After reading and viewing hundreds of blog posts, medical journal articles, and YouTube videos on cannabis and Crohn’s, I suspected it was.  I had been treating with prescription medications for 2 years and was feeling my health, energy and life slipping away.  I was getting worse and at a terrifying pace.  I had no idea what was in store for me and I had no idea it was even possible to be that sick — I had always assumed that there was some threshold of pain and suffering, some Agony Index at the pinnacle of which you would simply die.  Essentially, I had always assumed that something this relentlessly painful would be fatal.  I started to panic as I understood that it just might be possible to be this sick, or even sicker, indefinitely, and that at some point I would probably lose my mind from the pain.  What happened next seems a blur.

My Pentasa wasn’t working anymore and the next course of action was to get on an infusion treatment that basically gives you AIDS: it destroys your immune system.  You get all the opportunistic infections of an AIDS patient including thrush, pneumonia, and even cancer as so-called side-effects of the medication. Meanwhile, Crohn’s itself is not curable and is progressive, meaning that it never goes away and only gets worse.  So then, looking down that road, you have Crohn’s, AIDS, and cancer to contend with and all that comes with each condition including more treatment, more side-effects and more opportunities for medical accidents, treatment failures and complications up to and including death.  I suspect that actor Shannen Doherty took this treatment for her well-known case of Crohn’s and that the Crohn’s medication caused her cancer in the end.  I suspect the same thing happened to my fitness trainer who had an autoimmune disease and ended up with cancer too.  I began to see my own future.  And I was so desperate to have even a temporary respite from the agony of Crohn’s I was going to take the medication anyway.  I was tested for tuberculosis — a precondition to having your immune system decimated because any active infection at that point can kill you — and I was going to start the infusion treatments as soon as possible.  Everything up to this point had been either free samples of medication or self-pay and I was prepared to pay additional thousands of dollars if it meant I would find some relief — the infusions alone were to be something like $4,000 each, to be repeated every 8 weeks.

In the meantime, I had taken the first doctor’s advice and applied for health insurance.  Because I had not worked as an attorney for about 4 years by then and had started a small business that was compatible with my new and worsening disability I applied as an uninsured person through Obamacare which placed me on Medicaid due to my small income.   The first thing Medicaid did was deny the Crohn’s medicine I was already on (Pentasa, which didn’t work much anyway if at all) and then my doctors fired me because they didn’t take Medicaid.  Without a doctor, any plans for the infusions were put on indefinite hold.  At that point, because I had practiced benefits and anti-poverty law for years, I knew where I was headed: in and out of the hospital and fighting with Medicaid to approve maddeningly ineffective medicines and treatments and brutal, gravely dangerous ones, all of whose known side effects could be just as bad as if not worse than the disease itself, and where even a favorable resolution to the Medicaid issue would easily take months if not years to achieve.  All the while suffering with the hellish, unrelenting agony of un- and undertreated Crohn’s.  I knew what I had to do.

I packed one suitcase and made a reservation at a vacation rental property in a cannabis-friendly state where I had planned to stay for 2 months and treat with medical cannabis.  I had hoped that I would get better and go home but it’s now been 3 years and I am still here.  I have gotten significant pain relief and improvement in my Crohn’s symptoms which I consider a hard-won and unlikely personal success.   Nothing can diminish that and I am immensely grateful to have gotten some relief.  But now I have spent my life savings, liquidated my assets, and maxed out and destroyed my credit, and although I have worked on my small business as best I could, almost everything is gone. I will soon be facing homelessness as a chronically ill cannabis refugee.  Because I have refused Western medical treatments for my illness I am not eligible for disability-based benefits.  My attempt to “help myself” financially by starting a small business has complicated my finances such that I am not eligible for any need-based benefits at all, or anytime soon.

Not knowing what else to do, and wishing to document my experiences, I have started this blog.  It is intended to be a very short-term project where I will record my insights and what I have learned from my relatively new station as a chronically ill person in the context of Western patriarchal and capitalist medicine, and my resistance to it.  I hope to absolutely excoriate Western medicine’s treatment of Crohn’s and other serious illness; to rail against the disability- and income-based benefits structure where so many sick, injured and otherwise vulnerable people fall through the cracks; to describe my treatment successes and failures, including my treatment with medical marijuana (also known as medical cannabis, medical pot, or MMJ); to describe the crushing disappointment and sorrow I have experienced through family and friends’ failure or willful refusal to really “get” what Crohn’s is all about, what Crohn’s patients go through and how disabling Crohn’s can be; and hopefully to find a solution to the untenable situation in which I currently find myself.  At the very least, I will find some comfort knowing that I have spoken the truth aloud about my experience as a Crohn’s patient disaffected with Western patriarchal and capitalist medicine; as a cannabis refugee; and as an attorney who in the end, may be unable to help even myself successfully navigate the social, legal and financial hardships of a serious chronic illness.

To all Crohn’s patients — and all those seriously ill and disabled — who may find themselves reading here, I offer my empathy for you and your condition, my understanding of your plight, and my sincerest hope that you will find some comfort somewhere, whether through successful traditional or alternative treatment, miraculous or spontaneous remission, or simply by reading these words and the words of other truth-tellers online and off.  To Crohn’s patients specifically, I have received tremendous comfort and knowledge from reading your testimonies on online support forums and your truth-telling has soothed my soul and enriched my mind.  I hope to return the favor by recording my truths here, especially those that are taboo, contrary, uncomfortable, and rarely addressed.  Please feel free to comment here or contact me using the contact form at the top of the page.  I can’t promise I will respond, but know that I will read your words, and that I feel you.  I really, really feel you.

[fellowibders]

The Plot Thickens

I got an email from my GI and we were corresponding back and forth and now I don’t know where he is going to go from here. He wanted me to contact my local pharmacy regarding if I could break apart Pentasa and I found out through my pharmacist that I cannot, so I am not sure what the next is for me as it relates to my treatment. I figured that it wasn’t going to be so easy and my instincts were right. I hope there is a treatment option for me out there with a pill I can get down okay. I am awaiting his next response on what we are going to do because it looks like Pentasa is not going to be the move for me after all. It is like I can’t take the Delzicol anymore because they cancelled the size pill that I know I can swallow and the Pentasa I cannot break apart. I know I had spoken to my GI a few years ago in regards to Lialda, but I had seen the pill at that time and I remember telling him that just by the sight of it, I knew it was going to be impossible for me to even swallow it. I wish that pharmaceutical companies would keep in mind that not all of us can swallow large pills. 

I feel a whole bundle of nerves right now because I just want a proper direction to go to so that I could be put on a treatment that I know will work for me in the sense of the size of the pill. I see my GI in three weeks, so if this isn’t figured out over the next few weeks, at least I know I have a guaranteed appointment then, so I am sure we will discuss it in a lot more details then too. I have to say that I at least like the email system that I am fortunate enough to have that allows me to communicate with my GI directly. It seems that when I have gone through other channels in his office trying to find answers to this current dilemma, I have come up short. I am trying to see the positive and I think that is something that has Crohn’s Disease has taught me over the years. Even when things may not go as planned, find that one thing that is related to the situation that you have felt a sense of satisfaction due to things being properly handled. I know I am just going to be waiting for my answers and I hope I can get them soon. I wish for good days for everyone and that our bad days are spread more apart from one another. 

Love and Hugs, 

Wade

[shesalright-archive]

welp the immunosuppressant isn't covered by my insurance and they dont have any assistance avilable at this time and they dont want me to wait until the end of april to start somethingi could start fundraising for myself again but i'm never going to be able to afford the 500$ a month medication that may or may not work

[torque-witch]

Okay I'm taking hair, skin & nails supplement and my nails are still breaking and my hair falling out. Anyone else on Pentasa have a better solution?

[torque-witch]

Fuck me. I feel like medicine has made no progress... I do not want biologics!

[livingcrohns]

Could Anything Else Bad Happen??

I quit taking my pentasa for a few and got horrible cramps and constipation. I drink some miralax and this morning it kicks in along with a period. Need I mention my muscles kill from working out. This day has been hellish.