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- Jun 23, 2015
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Right…
Fairly new to the Forums (have been reading various threads the past couple of weeks). Not new to Crohn’s Disease: diagnosed in late 1997.
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This is going to be very long, so here’s your tl;dr:
Didn’t like the 1997 treatment options; sought alternatives, which didn’t work. Course of Pred, Asacol, etc. Went into remission swiftly, dropped the meds. In remission until 2002. Epic Fail stupid decisions + GI incompetence led to 3 month hospitalization in 2003 (nearly died twice). Collateral damage: life ruined. Years of (partial) recovery. Controlling via diet. OK for awhile, getting worse end of 2000s. New round of seeking help. 2010: medical community (standard and alternative) gave up on me (i believe): totally on my own. Doing end of life stuff, ticking off bucket list items, s*** quality of life. New severe pain i’ve never had before (26 May 2015) and here i am.
If you ask questions/make comments covered below in the full post, you will be referred to the full post.
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Some of you aren’t readers and won’t read anything further… that’s OK. I’m hoping at least one person on this board reads the whole thing… it would mean a lot to me to matter as a human being at least that much.
You, Me, Depression, This Forum
You are very brave, beautiful people. I deeply wish we’d been able to cross paths in life in some context other than this. I have known about this site for a number of years, but it has taken the extreme recent events to get me to participate here, because:
Per co-founder Mike Yarmo’s beautiful “Something to think about…” post, this post from me is me telling my story: the facts as best i can present them, good and bad. I have made and am currently making choices which are not recommended by many (sometimes including my PCP). Nothing in this post is meant as advice for another; it is my story, which is directly intertwined with my world view and life experiences.
No Insurance = Fewer Tests
I’ve been self-pay/no insurance most of my adult life (more below). Some of you may be frustrated that there is no proof/hard evidence of my disease state during much of the course of it. As a scientific mind i understand this, but it is what it is. When i write about remission, in most if not all cases it is based upon circumstantial evidence of how i feel and what’s going on with my body.
OK, let’s do this.
Sonic’s Crohn’s Story
Background: Me
I’m a male in my mid-50s. Neurotic, stress-prone, stress-sensitive worrier. Born, raised, and so far have always lived in California. Average to slender build, around 6'/1.8 m tall. Pre-Crohn’s diet was somewhat all over the place: quasi-sorta healthful variant of standard American diet growing up, then wavering into and out of healthy eating as an adult (but rarely a total crap diet). 100% non-smoker and not much on alcohol, though there were occasional party excesses. Paternal Grandmother had Diverticulitis (which no one bothered to tell me until after i was diagnosed); no other known IBD/IBS/digestive system issues in the extended family.
BSEE. Always chose my jobs/careers based upon my strong beliefs over highest remuneration (this point becomes very important once i’m ill). Atheist. Libertarian (capital L), which is important to mention here because this outlook strongly shapes my thoughts regarding medical care systems, and who’s paying for what.
History Pre-Diagnosis
Summer 1988 (i’m around 30): severe ongoing emotional distress related to end of a 7 year intimate interpersonal relationship; equivalent to, but not literally a divorce. One day at work in a state of the most possible extreme angst and despair, bent over onto my workbench with severe abdominal pain, which i now recognize as feeling just like a Crohn’s cramp, such as with a partial blockage. No restriction at that time; one-time event of about 5 minutes’ duration.
1991: another span of severe emotional distress, for other reasons. Started having abdominal cramping, which would come and go (and i now recognize as 90% likely Crohn’s cramps). My PCP or GP or whatever we’re calling the first-line regular doctor diagnosed it as a combination of stress and waaaay too much (bovine) dairy. I was having cheese sandwiches and milk and yogurt for nearly every meal! Dialing waaaaay back on the dairy (only one item per meal) and doing guided imagery and other de-stress things helped. Resuming an important major avocation/hobby i’d stopped months prior (after which the pains started) cured things.
Diagnosis and Immediate Aftermath
October 1997: starting into my second year in my new career (so i’d hoped) at Apple. Hellish long commute, every day. Extremely high stress at work: inexperienced manager who only knew how to crisis manage, so he had to manufacture crises to function. Massive layoffs: whole floors of people gone. Stress was off the charts, and i had little time to de-stress.
Abdominal cramping came back suddenly and sharply. I thought it was bad food at a San Jose restaurant, but no one else had trouble and it didn’t go away. Felt like a more severe variant of the 1991 cramps, so i did what i could to de-stress, including taking a vacation. Helped a bit, but not enough.
PCP (different one than above) suggested Psyllium husks. Bad idea: instant major cramping! Most painful thing i’d felt to that point. She flailed around for a few weeks, eventually referring me to the first of a string of gastroenterologists i’d come to hate.
Had one of those “It’ll take a couple of hours” all day small bowel series tests with the barium and all the x-rays. Other stuff i don’t remember happened, but for sure no biopsy.
December 1997: message on the answering machine which forever changed my life: “Good news!: you have Crohn’s Disease!” That’s what he said!:eek2: (I should’ve saved it). When i asked him to explain how and why that diagnosis was good news, the upshot was that it was good news for him, because he had a clear diagnosis! Got handed all the scary, upsetting “You can live a normal life too!” pamphlets. Between those and Dr. Ronald Adler’s own words, i heard such gems of the time as: “Diet doesn’t matter”(!) and my personal favorite, “There is no connection between emotions and Crohn’s Disease”(!!!). That one right there, flying directly in the face of my personal experience, gave me a strong sense that 1997 western medicine had no clue about this disease (if i was even correctly diagnosed, and i hoped i wasn’t!).
Dr. Adler was not pleased that i was putting his recommended treatments on hold so i could investigate “alternative” modalities, but this was Oakland, CA right next to Berkeley, so he was used to people with my mindset (even though he disagreed with it). Tried several things. The one i remember best is acupuncture with Chinese herbs. These did a bang-up job of dealing with life-long allergies and other lesser un-health issues i had, but unfortunately for me, they didn’t touch the cramping. I was on a leave of absence from work starting in January 1998 to allow me the needed time to pursue healing (physical and mental/emotional).
Something like a month or so went by with no success. Having exhausted my options, i went back to Dr. Adler and let him put me on Prednisone, Asacol, and i think one other whose name escapes me. It was becoming clear that this was going to be a long-term healing process, so with shame and sadness, i gave notice at Apple (i was more literally a contractor, not an Apple employee. If there was any health insurance, it was nearly meaningless. I had and have had no medical insurance most of my adult life). Between the cessation of stress dealing with working at Apple plus the meds, my Crohn’s went into remission (as far as we know: no sigmoidoscopy/colonoscopy as best i can recall).
March or April 1998: unemployed, living off savings + COBRA, trying to figure out how this happened and what to do about it, then find a way forward in life. Prednisone is done (thankfully! Hated the side-effects) and the others don’t seem to be doing anything (and as i recall had side-effects), so i drop them. Other than no popcorn, my diet goes back to what it had been before: almost anything. No signs of symptoms, yet also no signs of answers regarding how i got this and what can be done about keeping it from coming back.
Remainder of 1998: maternal grandparents’ house becomes available (grandfather died in the early 1990s; grandmother had advanced Alzheimer’s and had been moved to a care facility. She died that summer). My Love and i moved our lives from Albany, CA to Pasadena, CA, to live in a beautiful house in a nice neighborhood with a work-for-rent agreement with my parents (caretaking the property). I remain so busy trying to resolve this disease that i’m not looking for work, even though as far as i can tell, the disease is inactive.
The Good Period (had i known!)
September 1998-late 2002: searching, searching, searching for answers! Mental health work and, once again, some lesser medical issues being addressed successfully, but no resolution on the Crohn’s Disease, nor even a clear indication of how to keep it from coming back. LASIK surgery in late 2000 gave me a major self-esteem boost (escape from the Glass(es) Prison!).
Basically gave up looking for answers in early 2002, realizing no answers would be forthcoming. Turned my focus back to what i was going to do for income. Stress was building up as i tried to establish a consulting business (it never came close to being a viable business).
Epic, nearly Life-Ending, Fail
November 2002, a day i remember all too well: went to Home Depot to apply for a job. Soon as i finished and headed out the door, feeling that applying there was a bad idea, massive abdominal cramping hit me—first since 1997.
Right here is where my Epic Fail started: a decision i made which nearly killed me, and, with some help from bad medical care, successfully maimed me, badly whacking my quality of life and my ability to work. Here it is: traveling to my PCP in west Los Angeles was a pain: time-consuming, stressful, and expensive in gasoline. Great doctor/healer (he’s an acupuncturist and more as well as a MD), too far away. I had decided that it should be easy to find a good Integrative Medicine general practitioner doctor somewhere in the San Gabriel Valley where i lived. Looked and looked. I expect such a person existed/exists, but i never found one.
The doctor shopping took months, during which…wait for it…i attempted to manage my own symptoms, by myself, based upon not much information. Those of you who guessed that i got worse, give yourself a gold star: that’s what happened. I kept cutting more and more foods out of my diet, making myself weaker, but not resolving the cramping (we’re in early 2003 now).
March or April 2003: found and tried Molo-Cure, something i found online to “cure” IBDs. Followed their instructions to the letter; got worse. To be honest, it might have worked for someone with new, mild symptoms, but at this point mine were moderate to severe. Bought a clue, gave that up, tried another round of alternative healers (nothing improved). Researched and researched to find the best gastroenterologist in the San Gabriel Valley. All arrows pointed to Dr. Glenn Littenberg, who headed the gastro-e association and had all sorts of research papers published.
Horrible GI Doctor/Patient Match
On paper, Dr. Littenberg was Da Man. In practice, at least with me, it was a train wreck. He truly had no idea how to handle someone without insurance, who was self-pay. He did a stellar job minimizing tests…too stellar. Unlike 1997/98, i followed his advice, without pushing back seeking alternatives (which i’d already exhausted). Kept getting weaker. One day something happened such that i could no longer move my left thigh muscle. I had to limp/drag myself around. Got in touch with his office: nothing. Thigh thing got worse. Kept trying to get an appointment or something from Dr. Littenberg: nothing. Developed a fever: a bad fever.
Finally got an appointment with him, end of June 2003. The moment which changed my life (for the worse): “You need to go to the hospital”. “Oh, OK, i’d better go home and get my toothbrush.” “No. You need to go to the hospital right now!” So, after ignoring me for a couple of weeks, now it’s an emergency! “So I just go up the street to the emergency room at Huntington Hospital, right?” “You’d better go to County-USC. Since you don’t have insurance, Huntington will probably send you there anyway.”
County Hospital: End of Life as I Knew It
Hobbled into the emergency room of the hospital then officially known as LAC + USC, which i knew as County-USC, which TV viewers of decades past apparently knew as General Hospital. Waited over 24 hours before anyone even triaged me! I honestly don’t remember exactly what happened next, other than everything moved with glacial slowness. It was the start of the 4th. of July holiday weekend, so the over-worked staff was minimal, and no doctors were around over the weekend (at least not dealing with me). When i went in, i figured i’d be out in maybe a week or so—HAAAH! No one even really started looking at me until after the holiday weekend.
All i remember from this early point was that apparently there was a perforation in my small intestine (i don’t remember them using the word “perforation”, which i got from recent reading here). All i know is that raw sewage was leaking out of my small intestine into my body cavity. They had several drains hooked up trying to get that stuff out, and the start of an endless parade of IV fluids i cannot possibly document for you (TPN was a big player, and it probably started here).
Somewhere in these early days, a brand-new student doctor, unsupervised, managed to puncture the barrier between my left hip and my body cavity. I actually overheard the ranty discussion between her and a superior or colleague or something as i lay on a gurney nearby. She basically admitted her mistake…not that it would do me any good (my word against hers, and i was heavily drugged and near death at the time).
I remained in limbo for weeks, not really getting better. I think my first visit to the CMA (step-down from ICU) was somewhere in here, but i’m not sure. Around this time the friendly payment people came by, to discuss how the h*** i was going to pay for this. There really wasn’t any choice given my finances other than going on Medi-Cal (California Medicaid), for which i had “too much” money: my life savings (which the better multi-day Jeopardy! contestants often exceed). I basically had to make myself poor to be able to live! Did it (in a hardcore, clever, tricky, legal way), and signed on with Medi-Cal.
One night about 2 AM, a guy i’ve never seen before (a doctor) rushes in and says, “We’ve got to get you into surgery right away!” By that point i’d had i don’t know how many surgeries (i think i had the ileostomy bag by then…not sure), so i calmly asked, “What’s this one for?” “Your hip!” “Really? You’re only figuring that out now?! Sure… let’s go.” Hip joint was infected and had to be removed. They couldn’t replace it, because i was so messed up. All they could do was put in a “temporary” non-weight-bearing spacer.
Oh, did i mention: i’m entirely bedridden throughout this. Immobile, barely able to even turn myself over, hooked up to zillions of IVs, drains, analytic equipment, a catheter, etc. I was so bad off that they basically had to buy a brand-new deluxe high-end hospital bed (they were likely going to get it anyway, but i got it first), which no one knew how to use! Incompetent assistant nurses nearly crushed me via not knowing how to run it, leading to massive pain!
One of the times i was back in the main infection ward they stuck me in (held about 8 to 10 patients), one of the nurses i knew confidentially told me, “You almost died last night, you know”. I’d had no idea. To be honest, as i type this, even with some good things which have happened since 2003 and now, i wish i had died. Would’ve saved me and lots of others a lot of suffering and pain, and buckets of money.
Something like a month in (August 2003), Colo-Rectal finds me. “We’re taking over your case.” Me: “OK.” “You should’ve been ours all along.” Me, thinking to myself: {Niiiice.} If i didn’t have the ileostomy before, i got it then. It devastated me, until they told me it was temporary, until my intestines and the rest of my body could heal. The surgeon told me they removed “1/4 of my small intestine near the ileum”. Because the diagnosis was not clear in late 1997, i asked if i truly had Crohn’s Disease. The surgeon, who’d handled my intestines, replied, “Oh yeah, you have Crohn’s Disease”. Oh—just found this in my paper notebook: 1 meter (100 cm) of small intestine removed. Wikipedia is showing an average length for the small intestine to be about 7 m, so this would be 1/7th. The same article lists the ileum as being about 3 m long, so about 1/3 of the ileum. Maybe it was less than 100 cm and it is 1/4 of the ileum (shrugs). All i know is that my transit time is less than pre-surgery (but i’ve never timed it precisely), and that i’m having no trouble absorbing enough sublingual vitamin B12.
I don’t recall if it was here or before here that i went back into the CMA and almost died again (sepsis, both times). Once again, i wouldn’t have known if a nurse hadn’t told me after the fact. Once again, i still think the world would have been better off if i’d died then. Main reason i struggled to live was that my True Love—the woman who loved me at the time and later emotionally abandoned me—wanted me to live.
I was at a point where, with assistance, i could get out of bed and sit in a chair during daytimes. This was 2003: i didn’t have a working portable computer of any sort, and they didn’t have public/patient Internet. The days plodded slowly by.
Many times during the late July-August period, i was hooked up to so many IVs that they had to double-up the double-sided infusion pumps! I learned how to mute and control the volume of the alarms on those, so i could sleep. I don’t think it was until the nurses could no longer find my veins in either arm (my veins were so done with needles!) that they finally installed a PICC line (and i still needed an arm IV in addition!).
Colo-Rectal is basically done with me until i heal much better, so they kick me over to the Orthopedic group (for the new hip, someday) for September. I’ve been complaining about my hearing since mid-August: something’s wrong. Long story, the gist of which is that i used to have audiophile hearing: it was the best sense on my body. Always took care of it, protecting it from loud machinery, concerts, etc. Several careers revolved around it. I complained again to the Orthopedic doctors; a young one said, “Oh, that’s the Vancomycin.” “Well then, take me off of it!” “I don’t know that we can. Your infection might not clear.” I think i finally got them to do it, but it wasn’t easy and it was too late. Ototoxic drugs: if you don’t know of them and care even a little about your or anyone else’s hearing, read up on them, and nutrients which might possibly help minimize the damage (wish i’d known!).
Still no hip joint, and that wasn’t going to happen any time soon. Still had the ileostomy, and it was going to be a good while yet before it could be taken down. They gave me a walker (i wasn’t strong enough for crutches and had never used them) and started me on physical therapy. Finally the number of IV fluids was tapering down, so i was down to a single infusion pump and a manageable pole.
By late September (2003) nothing seems to be happening: i no longer know why i’m there, and they have no good reason for having me there. I’ve been there nearly 3 months. Arrangements start to be made for my discharge which, like everything else in that facility and that system, take a glacially long time. I continue building up my strength, walking more and more on my walker until i’m going between floors free-form exploring.
Discharge day was a cold, rainy day. I was shattered: i’d come in to be healed, and i was leaving with a ruined left hip (nothing wrong with it when i went in), ruined hearing (excellent when i went in), and an ileostomy! To add insult to injury, even though i was strong enough by that point, they insisted upon wheeling me out in a wheelchair—a truly broken man, with all the symbols thereto!
Darkest Days (Months)
October 2003: Years earlier, with no digestive issues, my depression was bad enough that i’d been suicidal. Now imagine what it was like to be a shattered person, who would never have their natural left hip again, with a *(&^ bag attached to my belly! I had to go on anxiety and other medications to even live, much less function. I was so upset that i vomited nightly for awhile. Sleeping in a spare bed—alone. If i’d had the strength to go into the hills and die, i likely would have. My Love had no idea what to do with me and was also shattered by the damage (to me), after the stress of visiting me in the hospital nearly every day whilst starting a new job and keeping the household going in my absence. She needed to take time off to drive me to a series of follow-up appointments, where there was seldom any good news.
November 2003: Went to a world-renowned hearing institute to find out what could be done about my hearing: Nothing. Inner ear cells poisoned by ototoxic drugs (Vancomycin). Permanent damage, not severe enough to benefit from a hearing aid, but for someone who has always been aurally oriented the way many people are visually oriented, life-destroying. Whole careers for which i had training and experience slipped away from me. Permanent tinnitus: until the day i die (or they can re-grow inner ear hair cells), i hear EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE! every waking moment in my left ear. Right now, EEEEEEEEEEEEEEEEEEEEEEE! Yesterday, tomorrow, and ever more. I can hear people speaking just fine. I can use a telephone just fine. Music i’ve never heard is usually OK: i don’t know what i’m missing. Music i know well, where i can readily tell what i’m not hearing, can send me into a deep, lingering depression spiral (i used to be a college radio DJ, which relates to my user name here). Certain sounds, like certain chirps of hummingbirds, i can only hear in my right ear, so there’s no sense of direction any more: it always sounds like it’s coming from hard right, even if it is physically lined up with my left ear.
December 2003: My ileostomy ring thing is infected and we can’t make it adhere—the ostomy nurse forgot to tell me about the belt thingie, and never gave it to me! She’s there with me, my Love, and my Colo-Rectal surgeon at a Colo-Rectal follow-up appointment. I’m crying like a baby as stuff shoots out of the ostomy hole as the nurse tries to clean me up. They’re telling me it’s going to be some longer period of time—weeks—before they can schedule a surgery slot. I cry out, “I can’t take it any more!”, then i look straight at the surgeon with child-like sparkly eyes, saying something about how it’s OK because i’m going to kill myself if i still have the ileostomy come Christmas time (which was a couple of weeks away at that point). Up to that point in my life, this was the closest i’d come to actually executing a viable suicide. I knew what i planned to do, and i was going to do it. The surgeon turned to another doctor and said softly (but loud enough for me to hear), “Bump someone.” He told me that he’d schedule take-down surgery for before Christmas, which is what happened.
The take-down surgery and surrounding events is its own story, which is actually kinda funny but too long to do justice here. The upshot was that it happened, and though i remained in the hospital over Christmas (which, being atheist, was OK with me), i did get the ileostomy taken down: i was hooked up to my butt again! Not all fixed up—not even close!—but enough of an improvement to give me hope.
Building Strength and Long Limbo: Life on a Walker
2004, the whole year, was challenging, with small rewards. Other than follow-ups, Colo-Rectal was done: the resection was holding, with no issues. They tried to get me into the County gastroenterology program, which i resisted. The orthopedic team had little for me: they couldn’t even give me a time frame for hip replacement surgery scheduling.
Life still shattered, i had plenty of time to research things. Via serendipity, through a political organization, i learned of the Life Extension Foundation (LEF). They had all kinds of information and literature backed by cited research studies (quite like many threads on this forum) about nutritional supplements, or what they often call nutricuticles, which they make and sell. It was a whole lot more rational, science-based, backed up, and popular than Molo-Cure, even though it was still “alternative”, and proudly so. A lot of the information along with the founder’s anti-FDA stance resonated with me. After a lot of reading and giving it a lot of thought, i decided to try some of their offerings, in hopes that they might help. No miracles and certainly no cures, but unlike the Molo-cure misadventure, the LEF multivitamins, L-glutamine, and other supplements seemed to be helping: i felt better, and started gaining strength (along with exercise such as i could do with no left hip joint, of course).
I felt massive amounts of shame going around in public on a walker in my early 40s, but sometimes it was necessary. Cleverness helped me get back into doing things: my Love sewed a cloth grocery bag onto the front of the walker, so i could put magazines, papers, etc. into it and carry things around with both hands available for the walker. It wasn’t all that far into 2004 before i was able to go up and down the stairs, to get back to the upstairs where my electronics workroom was. Some months later, i had no trouble moving big desktop CPU towers and heavy CRT displays up and downstairs, one step at a time. By the end of 2004, i was hopping up onto things to poke my head into attic crawl spaces, dipping down onto the ground under cars for diagnostic purposes…practically dancing on the thing.
Proving how bad my memory is with so many medical events having happened, i had forgotten until i checked my files that there was a flare in December 2004 with cramping pains severe enough to require a visit to the emergency room (local private hospital). I don’t have a food log from then, but it’s a safe guess that i had too many challenging foods.
Hip Joint, Please!
It had been well over a year since i’d been released (the first time, the 3 month span) from the hospital. Still no hint of getting a replacement hip. Desperate, i went outside the system: i wrote a highly-regarded joint surgeon at the Joint Replacement Institute, politely pleading with him to consider taking me under Medi-Cal. To my enduring good fortune, he did. In only a couple of months, February 2005, i was scheduled for hip replacement surgery!
The surgery went well. He even made my legs exactly the same length (most of us are off by a few millimeters, some more) at no extra charge! I was plenty strong enough now to go around on crutches instead of the walker, during the healing period before it was OK to put weight on the new joint. The only glitch was early one Sunday morning, when blood started shooting out of my thigh! My Love and i panicked—no one had said anything about this. She phoned the emergency number, but the person there had no idea (they were closing down the downtown Orthopedic Hospital—I had been one of the very last patients), and referred us to our local emergency room. More and more was pouring out, so we called 911. The ambulance took me to a local private hospital—not County! The short summary: we eventually learned that it was a harmless pool of blood, and “They do that—it happens” and not to worry about it. It had stopped by that point, and never resumed.
The new hip joint worked perfectly (still does)—I had another piece of my life back! Almost immediately, i dove into years-neglected projects, striving to get as much done as possible and my life in order as much as possible before getting back into my long-term future.
OK Times
2005-2008: Involved in all kinds of projects, but only occasionally paying work (too stressful!). No Crohn’s meds—none since the initial round in early 1998. Not seeing a GI. Only prescription med was an antidepressant (i mostly ran the alphabet with the SSRIs, none of which worked well for me. Celexa was the least worst for me). Experimenting with different supplements, mostly but not entirely from LEF, some recommended by my PCP.
I have had loose stools/diarreha from my disease, but for me it seldom has been an issue. Somewhere post-2003, my PCP started me on a Chinese herbal formulation marketed by Health Concerns as Isatis Cooling, which for my body/disease has proven essential to bowel stabilization. It is sometimes insufficient in and of itself—diet and other supplements matter—but when i‘ve run out, i’ve noticed my stool consistency very quickly starts wandering all over the map. It’s a little weird because “cooling” is contraindicated in TCM for what i have in every look-up chart i’ve ever seen, but somehow it works.
Halloween 2006: my records show another cramping flare severe enough to get me back into the emergency room and the hospital. I bailed on Medi-Cal once the hip surgery was wrapped up: i had no intention of remaining in a system which maimed me! Still with no insurance, i was hit with a nearly $19,000 bill for the E.R. and maybe a day or so in the hospital. Maybe somewhere i have the letter i sent to their financial department, explaining how i hadn’t been able to work since 1997, had no income, etc., but it’s too difficult to find it now if i still have it. In any case, the paperwork i have shows that they discounted down to a bit under $5000 because i promised to pay them cash immediately, which i did.
One thing i have learned over the years, which has served me well: if you are uninsured, self-pay, and have the money immediately accessible, always ask for a cash discount and pay them at the time of service! You save money, they save money not having to pay more employees (or overtime) to hound insurance companies to get paid weeks or months later, neither of you are hamstrung by insurance company mandates. I personally believe that if more people who are able to do so did this, medical costs would be a lot lower. Doctors, hospitals, radiology departments, ambulance services—ask. In the few cases where i’ve been declined, they’ve always offered a time payment option, which in some cases was helpful to me and i utilized.
This was the event which convinced me that i had to find another way to deal with the cramping than going to the E.R. I’m pretty sure that this was the time that i was sitting in the E.R. in abject pain, vomiting on the floor, waiting and waiting before even getting to triage. It was early in the morning and there weren’t more than maybe 6 other patients there. Home care of my cramping, while not fast in and of itself, has generally proven faster than these E.R. waiting sessions (and vastly less expensive).
Pretty sure my diet was getting more restrictive, but i’m not finding any dated food logs from this period.
2008: on a vacation a hamburger threw me into a partial-block cramping episode severe enough that we had to rent our motel room an additional day so i could let it clear.
Seeking Answers 2009-mid 2010
All the previous years my documentation of what i call cramping events and what this forum apparently calls partial blockages was somewhere between scattered and nonexistent. Starting in November 2009, i documented them better.
On the 2nd. of that month, i had a colonoscopy, which showed “Ulceration and narrowing of the surgical connection between the ileum and colon, indicative of recurrent Crohn’s”. I was on my Love’s HMO at the time, which paid for the colonoscopy and some GI appointments. I went through two gastroenterologists in short order, settling on one who was slightly more amenable to alternative treatments (did not offer them, but tolerated them). I was on Pentasa before and around the time of the colonoscopy, which seemed to help a little but not enough, and had a substantial side-effect of making me queasy. After the colonoscopy, the GI put me on Entocort, which gave me bad “caffeine shakes” without my having consumed any caffeine in any form at all (and i wanted to avoid immunosuppressants—always have, as i don’t think that’s the best approach for my disease).
Partial-block cramping events:
During this whole first part of 2010, i’m seeing the GI, discussing the balloon “rip up the scar tissue” option and other choices, and also seeing my PCP, who’s giving me acupuncture and electric stimulation. I’ve had acupuncture work for other things, but neither the acupuncture nor the electric stimulation was helping with my blockage cramping events. The GI refused to balloon without my taking Humira, and i refused to take Humira, so that was a dead end.
I had a small bowel series Dec. 2009. Did some gluten testing related to blood work in June 2010 (not seeing notes with conclusions).
Somewhere in the late 2000s, i started taking two Aleve during cramping events, to reduce the pain and inflammation. Now some of you may be about to start typing to let me know that NSAIDs like Aleve are Very Bad for people with IBD diseases. I know this. I am aware of the risks. My PCP and i have already had this discussion. He’s not in favor of it, but when i reminded him that it is the only thing which works for me which i can get outside of the hospital, and i only take an average of 2 to 4 a month (2 per cramping event), he reluctantly tolerates it. Levsin and a few other things he and others have offered under prescription have proven ineffective. For me and my body, Aleve works (and the gels work a bit faster than the solid pills). I avoid taking them when the peristalsis cramping pains are in the 1-3 range on the 0 to 10 pain scale, but if i start getting too many 4+ pains, i take them. Never more than 2 in 24 hours, and usually only 2 for a multi-day event (which events i try to avoid!).
June 2010: getting frustrated with everything i’m doing and nothing working. Discussed with PCP, who advised checking with UCLA’s IBD people. That happened in August: they had nothing new/different/innovative for me (just the usual heavy immunosuppressive meds).
Giving Up September 2010-Present
End of September 2010 i snapped. After a lifetime of dedicatedly helping people (often for free), i hit my wall. I also hit my wall with healers: my PCP had nothing for me, and my GI only had the usual routine, take it or leave it, his way or the highway. I walked away from it all. If i was still on Pentasa (not sure i was), i stopped. I’d gotten off my SSRI at the beginning of the year, so now i was prescription drug free! (and taking a lot of nutritional supplements, as i’d been doing since not long after the 2003 hospitalization).
I hadn’t worked steadily, nor really much at all, since 1997. Money was dwindling. I had no idea how to work things out, and it seemed like there was no way to work out the Crohn’s situation (that i was willing to undergo). It seemed like end days, so i treated them that way: i resumed writing fictional stories, making up proxy characters for the love i wasn’t getting. I already had very few friends and had hardly done much of anything outside the house for years. I spent my days in my grandfather’s comfy chair (not very comfy in reality), typing and typing. It was my sanity, my personal self-psychotherapy. I still do that today as much as i’m able, and it still fulfills those roles. I have finished several shorter novels, novellas, novelettes, and a short story or two (per the word counts i saw on Wikipedia). Several epic length novels are mostly written. All remain unpublished, and may forever if i can’t stay alive long enough to finish them.
Returning to subject matter apropos of why you’re here and the purpose of this forum, i treated my CD solely through diet. Let’s see how i did.
Cramping events (partial block unless otherwise noted):
Around this time my mother had a “small project which should only take a few weeks” related to two rental houses of hers. The houses were so profoundly messed up (dangerously close to slumlord condition) and L.A. traffic so slow that i wound up spontaneously living about 40 miles from my actual home, for about 7 months, doing major remodeling. My mother paid me and a jobless friend of mine from the middle of California, who lived along with me on the premises, so in a sense, i did have a job for 7 months in 2011. Electrical (rewired one house), plumbing (re-piped one house), tons of maintenance and repairs, HVAC, painting…we did it all (nearly). My mother is one of the few “employers”for whom i could work who could be understanding of me becoming suddenly non-functional due to cramping at unpredictable times and days.
I managed my Crohn’s mostly by sticking to a very restricted diet: rice-based vanilla protein powder with Trader Joe’s Rice Drink (like Rice Dream), sliced turkey, various potato chips and related, boxed soups (Imagine and Trader Joe’s), juices (i don’t remember if they had V8 VFusion juices then or not…something like those), and various candies (they dissolve and pass through my system easily). That was pretty much the whole range, and i certainly didn’t have more than a couple of those at any one meal (and since college i’ve usually eaten 2 meals a day instead of the normal 3). Let’s see how i did:
The project wrapped up at the start of December. I returned to my actual home.
2012 was not bad, except for November.
Cramping events (partial block unless otherwise noted):
2013 was a very good year:
2014 was mixed:
2015 has not been very good so far:
Review
On the basis that partial- and full-block cramping events are to be avoided (since they apparently add to scar tissue), my results are mixed. In terms of avoiding what i consider poisonous pharmaceuticals, many of which suppress the immune system (which i believe is counterproductive, at least for my disease), i have been doing well: average of same or fewer cramping events than when on the most recent meds (circa 2009-2010). No one, including me, is going to say that i’m in, or have been in, remission.
A more careful analysis of the food logs (last 2 years) might yield additional insight. I’m not seeing a pattern, other than i’ve gradually reduced the number of options i have. Up until this year, frozen salmon fillets or patties and similar frozen fish (thawed and cooked, of course), were staples which worked well. Over the past few months, they have not been passing through me. Even with the food log, what my body will accept from day to day (in terms of solids) remains an elusive mystery to me. I’ve had far too few vegetables in any form (including liquid) in recent years, especially since 2010, and far too much sugar and chocolate. My excuse for the sugar and chocolate has been that sometimes those are the only solids i can eat (they dissolve fully before hitting the blockage), and holistically, my mental health is a major part of my overall health equation. I’m currently taking a break from refined sugar and chocolate and related sweets/candies, to find out whether or not that helps in the post-big-event (the one this May) world. Looking into juicers and juicing (here and elsewhere).
For me personally, emotions play a giant factor in my digestive condition. Restriction is always worse during periods of higher stress, though it is confounding because there is a long-term averaging of stress over days and weeks in terms of the inflammation, so sometimes by the time it manifests i’ve already forgotten about whatever was stressing me so heavily.
If i had some way of handling major, unexpected, sudden traumatic medical emergencies, whether doing what regular people do and going to the E.R., or shooting myself, or whatever else, I’d likely be more at peace now. My romantic notion of walking up into the hills to die did not work out in May, and because i’m quite healthy outside of my Crohn’s and my depression, would likely have taken a painfully (literally) long time to play out—days or weeks. The power to freely make choices regarding my body is important to me, to the point where i have eschewed insurance even when i had a job and the means to pay for it. I don’t see any way for me to have that power, other than doing what i’m doing or waking up a billionaire—anyone anywhere else between these extremes is constrained. Poor people like i have become are highly constrained, placed into servile roles, in effect like children. My choices may kill me soon, and painfully, but at least like a state slogan, i will have lived free, or died.
Thank you for reading. Best Wishes to you all, always.
))Sonic((
Fairly new to the Forums (have been reading various threads the past couple of weeks). Not new to Crohn’s Disease: diagnosed in late 1997.
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This is going to be very long, so here’s your tl;dr:
Didn’t like the 1997 treatment options; sought alternatives, which didn’t work. Course of Pred, Asacol, etc. Went into remission swiftly, dropped the meds. In remission until 2002. Epic Fail stupid decisions + GI incompetence led to 3 month hospitalization in 2003 (nearly died twice). Collateral damage: life ruined. Years of (partial) recovery. Controlling via diet. OK for awhile, getting worse end of 2000s. New round of seeking help. 2010: medical community (standard and alternative) gave up on me (i believe): totally on my own. Doing end of life stuff, ticking off bucket list items, s*** quality of life. New severe pain i’ve never had before (26 May 2015) and here i am.
If you ask questions/make comments covered below in the full post, you will be referred to the full post.
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Some of you aren’t readers and won’t read anything further… that’s OK. I’m hoping at least one person on this board reads the whole thing… it would mean a lot to me to matter as a human being at least that much.
You, Me, Depression, This Forum
You are very brave, beautiful people. I deeply wish we’d been able to cross paths in life in some context other than this. I have known about this site for a number of years, but it has taken the extreme recent events to get me to participate here, because:
- I’m a loner, not a joiner (especially of a “disease club”, if you’ll please pardon that framing).
- My first incurable disease (predating Crohn’s) is Major Depression/Clinical Depression/Chronic Depression—whatever term is used for severe, ongoing (years and years) depression, especially that which hardly responds to psychotherapy and medication.
- Every time i read about/research Crohn’s Disease, i go into a downward depressive spiral. I wind up cramping more, my immune system tanks, etc. One might think that after about 13 years of living with this disease that by now i would’ve reached a point of acceptance. Nope…not even close.
- I have been suicidal in the past (and i’m kinda heading that way again, but for the record, it is currently suicidal ideation, not an immediate plan). I have to be careful of triggers (such as my reading too many CD horror stories, whether here, elsewhere, or both).
Per co-founder Mike Yarmo’s beautiful “Something to think about…” post, this post from me is me telling my story: the facts as best i can present them, good and bad. I have made and am currently making choices which are not recommended by many (sometimes including my PCP). Nothing in this post is meant as advice for another; it is my story, which is directly intertwined with my world view and life experiences.
No Insurance = Fewer Tests
I’ve been self-pay/no insurance most of my adult life (more below). Some of you may be frustrated that there is no proof/hard evidence of my disease state during much of the course of it. As a scientific mind i understand this, but it is what it is. When i write about remission, in most if not all cases it is based upon circumstantial evidence of how i feel and what’s going on with my body.
OK, let’s do this.
Sonic’s Crohn’s Story
Background: Me
I’m a male in my mid-50s. Neurotic, stress-prone, stress-sensitive worrier. Born, raised, and so far have always lived in California. Average to slender build, around 6'/1.8 m tall. Pre-Crohn’s diet was somewhat all over the place: quasi-sorta healthful variant of standard American diet growing up, then wavering into and out of healthy eating as an adult (but rarely a total crap diet). 100% non-smoker and not much on alcohol, though there were occasional party excesses. Paternal Grandmother had Diverticulitis (which no one bothered to tell me until after i was diagnosed); no other known IBD/IBS/digestive system issues in the extended family.
BSEE. Always chose my jobs/careers based upon my strong beliefs over highest remuneration (this point becomes very important once i’m ill). Atheist. Libertarian (capital L), which is important to mention here because this outlook strongly shapes my thoughts regarding medical care systems, and who’s paying for what.
History Pre-Diagnosis
Summer 1988 (i’m around 30): severe ongoing emotional distress related to end of a 7 year intimate interpersonal relationship; equivalent to, but not literally a divorce. One day at work in a state of the most possible extreme angst and despair, bent over onto my workbench with severe abdominal pain, which i now recognize as feeling just like a Crohn’s cramp, such as with a partial blockage. No restriction at that time; one-time event of about 5 minutes’ duration.
1991: another span of severe emotional distress, for other reasons. Started having abdominal cramping, which would come and go (and i now recognize as 90% likely Crohn’s cramps). My PCP or GP or whatever we’re calling the first-line regular doctor diagnosed it as a combination of stress and waaaay too much (bovine) dairy. I was having cheese sandwiches and milk and yogurt for nearly every meal! Dialing waaaaay back on the dairy (only one item per meal) and doing guided imagery and other de-stress things helped. Resuming an important major avocation/hobby i’d stopped months prior (after which the pains started) cured things.
Diagnosis and Immediate Aftermath
October 1997: starting into my second year in my new career (so i’d hoped) at Apple. Hellish long commute, every day. Extremely high stress at work: inexperienced manager who only knew how to crisis manage, so he had to manufacture crises to function. Massive layoffs: whole floors of people gone. Stress was off the charts, and i had little time to de-stress.
Abdominal cramping came back suddenly and sharply. I thought it was bad food at a San Jose restaurant, but no one else had trouble and it didn’t go away. Felt like a more severe variant of the 1991 cramps, so i did what i could to de-stress, including taking a vacation. Helped a bit, but not enough.
PCP (different one than above) suggested Psyllium husks. Bad idea: instant major cramping! Most painful thing i’d felt to that point. She flailed around for a few weeks, eventually referring me to the first of a string of gastroenterologists i’d come to hate.
Had one of those “It’ll take a couple of hours” all day small bowel series tests with the barium and all the x-rays. Other stuff i don’t remember happened, but for sure no biopsy.
December 1997: message on the answering machine which forever changed my life: “Good news!: you have Crohn’s Disease!” That’s what he said!:eek2: (I should’ve saved it). When i asked him to explain how and why that diagnosis was good news, the upshot was that it was good news for him, because he had a clear diagnosis! Got handed all the scary, upsetting “You can live a normal life too!” pamphlets. Between those and Dr. Ronald Adler’s own words, i heard such gems of the time as: “Diet doesn’t matter”(!) and my personal favorite, “There is no connection between emotions and Crohn’s Disease”(!!!). That one right there, flying directly in the face of my personal experience, gave me a strong sense that 1997 western medicine had no clue about this disease (if i was even correctly diagnosed, and i hoped i wasn’t!).
Dr. Adler was not pleased that i was putting his recommended treatments on hold so i could investigate “alternative” modalities, but this was Oakland, CA right next to Berkeley, so he was used to people with my mindset (even though he disagreed with it). Tried several things. The one i remember best is acupuncture with Chinese herbs. These did a bang-up job of dealing with life-long allergies and other lesser un-health issues i had, but unfortunately for me, they didn’t touch the cramping. I was on a leave of absence from work starting in January 1998 to allow me the needed time to pursue healing (physical and mental/emotional).
Something like a month or so went by with no success. Having exhausted my options, i went back to Dr. Adler and let him put me on Prednisone, Asacol, and i think one other whose name escapes me. It was becoming clear that this was going to be a long-term healing process, so with shame and sadness, i gave notice at Apple (i was more literally a contractor, not an Apple employee. If there was any health insurance, it was nearly meaningless. I had and have had no medical insurance most of my adult life). Between the cessation of stress dealing with working at Apple plus the meds, my Crohn’s went into remission (as far as we know: no sigmoidoscopy/colonoscopy as best i can recall).
March or April 1998: unemployed, living off savings + COBRA, trying to figure out how this happened and what to do about it, then find a way forward in life. Prednisone is done (thankfully! Hated the side-effects) and the others don’t seem to be doing anything (and as i recall had side-effects), so i drop them. Other than no popcorn, my diet goes back to what it had been before: almost anything. No signs of symptoms, yet also no signs of answers regarding how i got this and what can be done about keeping it from coming back.
Remainder of 1998: maternal grandparents’ house becomes available (grandfather died in the early 1990s; grandmother had advanced Alzheimer’s and had been moved to a care facility. She died that summer). My Love and i moved our lives from Albany, CA to Pasadena, CA, to live in a beautiful house in a nice neighborhood with a work-for-rent agreement with my parents (caretaking the property). I remain so busy trying to resolve this disease that i’m not looking for work, even though as far as i can tell, the disease is inactive.
The Good Period (had i known!)
September 1998-late 2002: searching, searching, searching for answers! Mental health work and, once again, some lesser medical issues being addressed successfully, but no resolution on the Crohn’s Disease, nor even a clear indication of how to keep it from coming back. LASIK surgery in late 2000 gave me a major self-esteem boost (escape from the Glass(es) Prison!).
Basically gave up looking for answers in early 2002, realizing no answers would be forthcoming. Turned my focus back to what i was going to do for income. Stress was building up as i tried to establish a consulting business (it never came close to being a viable business).
Epic, nearly Life-Ending, Fail
November 2002, a day i remember all too well: went to Home Depot to apply for a job. Soon as i finished and headed out the door, feeling that applying there was a bad idea, massive abdominal cramping hit me—first since 1997.
Right here is where my Epic Fail started: a decision i made which nearly killed me, and, with some help from bad medical care, successfully maimed me, badly whacking my quality of life and my ability to work. Here it is: traveling to my PCP in west Los Angeles was a pain: time-consuming, stressful, and expensive in gasoline. Great doctor/healer (he’s an acupuncturist and more as well as a MD), too far away. I had decided that it should be easy to find a good Integrative Medicine general practitioner doctor somewhere in the San Gabriel Valley where i lived. Looked and looked. I expect such a person existed/exists, but i never found one.
The doctor shopping took months, during which…wait for it…i attempted to manage my own symptoms, by myself, based upon not much information. Those of you who guessed that i got worse, give yourself a gold star: that’s what happened. I kept cutting more and more foods out of my diet, making myself weaker, but not resolving the cramping (we’re in early 2003 now).
March or April 2003: found and tried Molo-Cure, something i found online to “cure” IBDs. Followed their instructions to the letter; got worse. To be honest, it might have worked for someone with new, mild symptoms, but at this point mine were moderate to severe. Bought a clue, gave that up, tried another round of alternative healers (nothing improved). Researched and researched to find the best gastroenterologist in the San Gabriel Valley. All arrows pointed to Dr. Glenn Littenberg, who headed the gastro-e association and had all sorts of research papers published.
Horrible GI Doctor/Patient Match
On paper, Dr. Littenberg was Da Man. In practice, at least with me, it was a train wreck. He truly had no idea how to handle someone without insurance, who was self-pay. He did a stellar job minimizing tests…too stellar. Unlike 1997/98, i followed his advice, without pushing back seeking alternatives (which i’d already exhausted). Kept getting weaker. One day something happened such that i could no longer move my left thigh muscle. I had to limp/drag myself around. Got in touch with his office: nothing. Thigh thing got worse. Kept trying to get an appointment or something from Dr. Littenberg: nothing. Developed a fever: a bad fever.
Finally got an appointment with him, end of June 2003. The moment which changed my life (for the worse): “You need to go to the hospital”. “Oh, OK, i’d better go home and get my toothbrush.” “No. You need to go to the hospital right now!” So, after ignoring me for a couple of weeks, now it’s an emergency! “So I just go up the street to the emergency room at Huntington Hospital, right?” “You’d better go to County-USC. Since you don’t have insurance, Huntington will probably send you there anyway.”
County Hospital: End of Life as I Knew It
Hobbled into the emergency room of the hospital then officially known as LAC + USC, which i knew as County-USC, which TV viewers of decades past apparently knew as General Hospital. Waited over 24 hours before anyone even triaged me! I honestly don’t remember exactly what happened next, other than everything moved with glacial slowness. It was the start of the 4th. of July holiday weekend, so the over-worked staff was minimal, and no doctors were around over the weekend (at least not dealing with me). When i went in, i figured i’d be out in maybe a week or so—HAAAH! No one even really started looking at me until after the holiday weekend.
All i remember from this early point was that apparently there was a perforation in my small intestine (i don’t remember them using the word “perforation”, which i got from recent reading here). All i know is that raw sewage was leaking out of my small intestine into my body cavity. They had several drains hooked up trying to get that stuff out, and the start of an endless parade of IV fluids i cannot possibly document for you (TPN was a big player, and it probably started here).
Somewhere in these early days, a brand-new student doctor, unsupervised, managed to puncture the barrier between my left hip and my body cavity. I actually overheard the ranty discussion between her and a superior or colleague or something as i lay on a gurney nearby. She basically admitted her mistake…not that it would do me any good (my word against hers, and i was heavily drugged and near death at the time).
I remained in limbo for weeks, not really getting better. I think my first visit to the CMA (step-down from ICU) was somewhere in here, but i’m not sure. Around this time the friendly payment people came by, to discuss how the h*** i was going to pay for this. There really wasn’t any choice given my finances other than going on Medi-Cal (California Medicaid), for which i had “too much” money: my life savings (which the better multi-day Jeopardy! contestants often exceed). I basically had to make myself poor to be able to live! Did it (in a hardcore, clever, tricky, legal way), and signed on with Medi-Cal.
One night about 2 AM, a guy i’ve never seen before (a doctor) rushes in and says, “We’ve got to get you into surgery right away!” By that point i’d had i don’t know how many surgeries (i think i had the ileostomy bag by then…not sure), so i calmly asked, “What’s this one for?” “Your hip!” “Really? You’re only figuring that out now?! Sure… let’s go.” Hip joint was infected and had to be removed. They couldn’t replace it, because i was so messed up. All they could do was put in a “temporary” non-weight-bearing spacer.
Oh, did i mention: i’m entirely bedridden throughout this. Immobile, barely able to even turn myself over, hooked up to zillions of IVs, drains, analytic equipment, a catheter, etc. I was so bad off that they basically had to buy a brand-new deluxe high-end hospital bed (they were likely going to get it anyway, but i got it first), which no one knew how to use! Incompetent assistant nurses nearly crushed me via not knowing how to run it, leading to massive pain!
One of the times i was back in the main infection ward they stuck me in (held about 8 to 10 patients), one of the nurses i knew confidentially told me, “You almost died last night, you know”. I’d had no idea. To be honest, as i type this, even with some good things which have happened since 2003 and now, i wish i had died. Would’ve saved me and lots of others a lot of suffering and pain, and buckets of money.
Something like a month in (August 2003), Colo-Rectal finds me. “We’re taking over your case.” Me: “OK.” “You should’ve been ours all along.” Me, thinking to myself: {Niiiice.} If i didn’t have the ileostomy before, i got it then. It devastated me, until they told me it was temporary, until my intestines and the rest of my body could heal. The surgeon told me they removed “1/4 of my small intestine near the ileum”. Because the diagnosis was not clear in late 1997, i asked if i truly had Crohn’s Disease. The surgeon, who’d handled my intestines, replied, “Oh yeah, you have Crohn’s Disease”. Oh—just found this in my paper notebook: 1 meter (100 cm) of small intestine removed. Wikipedia is showing an average length for the small intestine to be about 7 m, so this would be 1/7th. The same article lists the ileum as being about 3 m long, so about 1/3 of the ileum. Maybe it was less than 100 cm and it is 1/4 of the ileum (shrugs). All i know is that my transit time is less than pre-surgery (but i’ve never timed it precisely), and that i’m having no trouble absorbing enough sublingual vitamin B12.
I don’t recall if it was here or before here that i went back into the CMA and almost died again (sepsis, both times). Once again, i wouldn’t have known if a nurse hadn’t told me after the fact. Once again, i still think the world would have been better off if i’d died then. Main reason i struggled to live was that my True Love—the woman who loved me at the time and later emotionally abandoned me—wanted me to live.
I was at a point where, with assistance, i could get out of bed and sit in a chair during daytimes. This was 2003: i didn’t have a working portable computer of any sort, and they didn’t have public/patient Internet. The days plodded slowly by.
Many times during the late July-August period, i was hooked up to so many IVs that they had to double-up the double-sided infusion pumps! I learned how to mute and control the volume of the alarms on those, so i could sleep. I don’t think it was until the nurses could no longer find my veins in either arm (my veins were so done with needles!) that they finally installed a PICC line (and i still needed an arm IV in addition!).
Colo-Rectal is basically done with me until i heal much better, so they kick me over to the Orthopedic group (for the new hip, someday) for September. I’ve been complaining about my hearing since mid-August: something’s wrong. Long story, the gist of which is that i used to have audiophile hearing: it was the best sense on my body. Always took care of it, protecting it from loud machinery, concerts, etc. Several careers revolved around it. I complained again to the Orthopedic doctors; a young one said, “Oh, that’s the Vancomycin.” “Well then, take me off of it!” “I don’t know that we can. Your infection might not clear.” I think i finally got them to do it, but it wasn’t easy and it was too late. Ototoxic drugs: if you don’t know of them and care even a little about your or anyone else’s hearing, read up on them, and nutrients which might possibly help minimize the damage (wish i’d known!).
Still no hip joint, and that wasn’t going to happen any time soon. Still had the ileostomy, and it was going to be a good while yet before it could be taken down. They gave me a walker (i wasn’t strong enough for crutches and had never used them) and started me on physical therapy. Finally the number of IV fluids was tapering down, so i was down to a single infusion pump and a manageable pole.
By late September (2003) nothing seems to be happening: i no longer know why i’m there, and they have no good reason for having me there. I’ve been there nearly 3 months. Arrangements start to be made for my discharge which, like everything else in that facility and that system, take a glacially long time. I continue building up my strength, walking more and more on my walker until i’m going between floors free-form exploring.
Discharge day was a cold, rainy day. I was shattered: i’d come in to be healed, and i was leaving with a ruined left hip (nothing wrong with it when i went in), ruined hearing (excellent when i went in), and an ileostomy! To add insult to injury, even though i was strong enough by that point, they insisted upon wheeling me out in a wheelchair—a truly broken man, with all the symbols thereto!
Darkest Days (Months)
October 2003: Years earlier, with no digestive issues, my depression was bad enough that i’d been suicidal. Now imagine what it was like to be a shattered person, who would never have their natural left hip again, with a *(&^ bag attached to my belly! I had to go on anxiety and other medications to even live, much less function. I was so upset that i vomited nightly for awhile. Sleeping in a spare bed—alone. If i’d had the strength to go into the hills and die, i likely would have. My Love had no idea what to do with me and was also shattered by the damage (to me), after the stress of visiting me in the hospital nearly every day whilst starting a new job and keeping the household going in my absence. She needed to take time off to drive me to a series of follow-up appointments, where there was seldom any good news.
November 2003: Went to a world-renowned hearing institute to find out what could be done about my hearing: Nothing. Inner ear cells poisoned by ototoxic drugs (Vancomycin). Permanent damage, not severe enough to benefit from a hearing aid, but for someone who has always been aurally oriented the way many people are visually oriented, life-destroying. Whole careers for which i had training and experience slipped away from me. Permanent tinnitus: until the day i die (or they can re-grow inner ear hair cells), i hear EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE! every waking moment in my left ear. Right now, EEEEEEEEEEEEEEEEEEEEEEE! Yesterday, tomorrow, and ever more. I can hear people speaking just fine. I can use a telephone just fine. Music i’ve never heard is usually OK: i don’t know what i’m missing. Music i know well, where i can readily tell what i’m not hearing, can send me into a deep, lingering depression spiral (i used to be a college radio DJ, which relates to my user name here). Certain sounds, like certain chirps of hummingbirds, i can only hear in my right ear, so there’s no sense of direction any more: it always sounds like it’s coming from hard right, even if it is physically lined up with my left ear.
December 2003: My ileostomy ring thing is infected and we can’t make it adhere—the ostomy nurse forgot to tell me about the belt thingie, and never gave it to me! She’s there with me, my Love, and my Colo-Rectal surgeon at a Colo-Rectal follow-up appointment. I’m crying like a baby as stuff shoots out of the ostomy hole as the nurse tries to clean me up. They’re telling me it’s going to be some longer period of time—weeks—before they can schedule a surgery slot. I cry out, “I can’t take it any more!”, then i look straight at the surgeon with child-like sparkly eyes, saying something about how it’s OK because i’m going to kill myself if i still have the ileostomy come Christmas time (which was a couple of weeks away at that point). Up to that point in my life, this was the closest i’d come to actually executing a viable suicide. I knew what i planned to do, and i was going to do it. The surgeon turned to another doctor and said softly (but loud enough for me to hear), “Bump someone.” He told me that he’d schedule take-down surgery for before Christmas, which is what happened.
The take-down surgery and surrounding events is its own story, which is actually kinda funny but too long to do justice here. The upshot was that it happened, and though i remained in the hospital over Christmas (which, being atheist, was OK with me), i did get the ileostomy taken down: i was hooked up to my butt again! Not all fixed up—not even close!—but enough of an improvement to give me hope.
Building Strength and Long Limbo: Life on a Walker
2004, the whole year, was challenging, with small rewards. Other than follow-ups, Colo-Rectal was done: the resection was holding, with no issues. They tried to get me into the County gastroenterology program, which i resisted. The orthopedic team had little for me: they couldn’t even give me a time frame for hip replacement surgery scheduling.
Life still shattered, i had plenty of time to research things. Via serendipity, through a political organization, i learned of the Life Extension Foundation (LEF). They had all kinds of information and literature backed by cited research studies (quite like many threads on this forum) about nutritional supplements, or what they often call nutricuticles, which they make and sell. It was a whole lot more rational, science-based, backed up, and popular than Molo-Cure, even though it was still “alternative”, and proudly so. A lot of the information along with the founder’s anti-FDA stance resonated with me. After a lot of reading and giving it a lot of thought, i decided to try some of their offerings, in hopes that they might help. No miracles and certainly no cures, but unlike the Molo-cure misadventure, the LEF multivitamins, L-glutamine, and other supplements seemed to be helping: i felt better, and started gaining strength (along with exercise such as i could do with no left hip joint, of course).
I felt massive amounts of shame going around in public on a walker in my early 40s, but sometimes it was necessary. Cleverness helped me get back into doing things: my Love sewed a cloth grocery bag onto the front of the walker, so i could put magazines, papers, etc. into it and carry things around with both hands available for the walker. It wasn’t all that far into 2004 before i was able to go up and down the stairs, to get back to the upstairs where my electronics workroom was. Some months later, i had no trouble moving big desktop CPU towers and heavy CRT displays up and downstairs, one step at a time. By the end of 2004, i was hopping up onto things to poke my head into attic crawl spaces, dipping down onto the ground under cars for diagnostic purposes…practically dancing on the thing.
Proving how bad my memory is with so many medical events having happened, i had forgotten until i checked my files that there was a flare in December 2004 with cramping pains severe enough to require a visit to the emergency room (local private hospital). I don’t have a food log from then, but it’s a safe guess that i had too many challenging foods.
Hip Joint, Please!
It had been well over a year since i’d been released (the first time, the 3 month span) from the hospital. Still no hint of getting a replacement hip. Desperate, i went outside the system: i wrote a highly-regarded joint surgeon at the Joint Replacement Institute, politely pleading with him to consider taking me under Medi-Cal. To my enduring good fortune, he did. In only a couple of months, February 2005, i was scheduled for hip replacement surgery!
The surgery went well. He even made my legs exactly the same length (most of us are off by a few millimeters, some more) at no extra charge! I was plenty strong enough now to go around on crutches instead of the walker, during the healing period before it was OK to put weight on the new joint. The only glitch was early one Sunday morning, when blood started shooting out of my thigh! My Love and i panicked—no one had said anything about this. She phoned the emergency number, but the person there had no idea (they were closing down the downtown Orthopedic Hospital—I had been one of the very last patients), and referred us to our local emergency room. More and more was pouring out, so we called 911. The ambulance took me to a local private hospital—not County! The short summary: we eventually learned that it was a harmless pool of blood, and “They do that—it happens” and not to worry about it. It had stopped by that point, and never resumed.
The new hip joint worked perfectly (still does)—I had another piece of my life back! Almost immediately, i dove into years-neglected projects, striving to get as much done as possible and my life in order as much as possible before getting back into my long-term future.
OK Times
2005-2008: Involved in all kinds of projects, but only occasionally paying work (too stressful!). No Crohn’s meds—none since the initial round in early 1998. Not seeing a GI. Only prescription med was an antidepressant (i mostly ran the alphabet with the SSRIs, none of which worked well for me. Celexa was the least worst for me). Experimenting with different supplements, mostly but not entirely from LEF, some recommended by my PCP.
I have had loose stools/diarreha from my disease, but for me it seldom has been an issue. Somewhere post-2003, my PCP started me on a Chinese herbal formulation marketed by Health Concerns as Isatis Cooling, which for my body/disease has proven essential to bowel stabilization. It is sometimes insufficient in and of itself—diet and other supplements matter—but when i‘ve run out, i’ve noticed my stool consistency very quickly starts wandering all over the map. It’s a little weird because “cooling” is contraindicated in TCM for what i have in every look-up chart i’ve ever seen, but somehow it works.
Halloween 2006: my records show another cramping flare severe enough to get me back into the emergency room and the hospital. I bailed on Medi-Cal once the hip surgery was wrapped up: i had no intention of remaining in a system which maimed me! Still with no insurance, i was hit with a nearly $19,000 bill for the E.R. and maybe a day or so in the hospital. Maybe somewhere i have the letter i sent to their financial department, explaining how i hadn’t been able to work since 1997, had no income, etc., but it’s too difficult to find it now if i still have it. In any case, the paperwork i have shows that they discounted down to a bit under $5000 because i promised to pay them cash immediately, which i did.
One thing i have learned over the years, which has served me well: if you are uninsured, self-pay, and have the money immediately accessible, always ask for a cash discount and pay them at the time of service! You save money, they save money not having to pay more employees (or overtime) to hound insurance companies to get paid weeks or months later, neither of you are hamstrung by insurance company mandates. I personally believe that if more people who are able to do so did this, medical costs would be a lot lower. Doctors, hospitals, radiology departments, ambulance services—ask. In the few cases where i’ve been declined, they’ve always offered a time payment option, which in some cases was helpful to me and i utilized.
This was the event which convinced me that i had to find another way to deal with the cramping than going to the E.R. I’m pretty sure that this was the time that i was sitting in the E.R. in abject pain, vomiting on the floor, waiting and waiting before even getting to triage. It was early in the morning and there weren’t more than maybe 6 other patients there. Home care of my cramping, while not fast in and of itself, has generally proven faster than these E.R. waiting sessions (and vastly less expensive).
Pretty sure my diet was getting more restrictive, but i’m not finding any dated food logs from this period.
2008: on a vacation a hamburger threw me into a partial-block cramping episode severe enough that we had to rent our motel room an additional day so i could let it clear.
Seeking Answers 2009-mid 2010
All the previous years my documentation of what i call cramping events and what this forum apparently calls partial blockages was somewhere between scattered and nonexistent. Starting in November 2009, i documented them better.
On the 2nd. of that month, i had a colonoscopy, which showed “Ulceration and narrowing of the surgical connection between the ileum and colon, indicative of recurrent Crohn’s”. I was on my Love’s HMO at the time, which paid for the colonoscopy and some GI appointments. I went through two gastroenterologists in short order, settling on one who was slightly more amenable to alternative treatments (did not offer them, but tolerated them). I was on Pentasa before and around the time of the colonoscopy, which seemed to help a little but not enough, and had a substantial side-effect of making me queasy. After the colonoscopy, the GI put me on Entocort, which gave me bad “caffeine shakes” without my having consumed any caffeine in any form at all (and i wanted to avoid immunosuppressants—always have, as i don’t think that’s the best approach for my disease).
Partial-block cramping events:
- 2 in November 2009 (on the meds)
- 3 in December 2009 (on the meds, starting to taper off Entocort after the last event).
- 4 in January 2010 (first one ran 3 days)(Entocort is over; still taking Pentasa)
- 3 in February 2010
- 6 in March 2010, including one with vomiting which per reading here might have been a full block, and another which for sure was a full block (per notes of nothing moving) but no vomiting. Some of the others i noted as very light, requiring no pain medication.
- 2 in April 2010
During this whole first part of 2010, i’m seeing the GI, discussing the balloon “rip up the scar tissue” option and other choices, and also seeing my PCP, who’s giving me acupuncture and electric stimulation. I’ve had acupuncture work for other things, but neither the acupuncture nor the electric stimulation was helping with my blockage cramping events. The GI refused to balloon without my taking Humira, and i refused to take Humira, so that was a dead end.
- 2 in May 2010 (one was light)
- 3 in June 2010 (mild, one edging to moderate)
I had a small bowel series Dec. 2009. Did some gluten testing related to blood work in June 2010 (not seeing notes with conclusions).
Somewhere in the late 2000s, i started taking two Aleve during cramping events, to reduce the pain and inflammation. Now some of you may be about to start typing to let me know that NSAIDs like Aleve are Very Bad for people with IBD diseases. I know this. I am aware of the risks. My PCP and i have already had this discussion. He’s not in favor of it, but when i reminded him that it is the only thing which works for me which i can get outside of the hospital, and i only take an average of 2 to 4 a month (2 per cramping event), he reluctantly tolerates it. Levsin and a few other things he and others have offered under prescription have proven ineffective. For me and my body, Aleve works (and the gels work a bit faster than the solid pills). I avoid taking them when the peristalsis cramping pains are in the 1-3 range on the 0 to 10 pain scale, but if i start getting too many 4+ pains, i take them. Never more than 2 in 24 hours, and usually only 2 for a multi-day event (which events i try to avoid!).
June 2010: getting frustrated with everything i’m doing and nothing working. Discussed with PCP, who advised checking with UCLA’s IBD people. That happened in August: they had nothing new/different/innovative for me (just the usual heavy immunosuppressive meds).
- 1 marked as Abdominal Pain rather than cramping in July 2010. Took no pain killers. Realized i’d forgotten to take probiotics for weeks!
- 2 in August 2010
- 1 in September 2010, moderate, which cleared fully within an hour after taking the Aleve.
Giving Up September 2010-Present
End of September 2010 i snapped. After a lifetime of dedicatedly helping people (often for free), i hit my wall. I also hit my wall with healers: my PCP had nothing for me, and my GI only had the usual routine, take it or leave it, his way or the highway. I walked away from it all. If i was still on Pentasa (not sure i was), i stopped. I’d gotten off my SSRI at the beginning of the year, so now i was prescription drug free! (and taking a lot of nutritional supplements, as i’d been doing since not long after the 2003 hospitalization).
I hadn’t worked steadily, nor really much at all, since 1997. Money was dwindling. I had no idea how to work things out, and it seemed like there was no way to work out the Crohn’s situation (that i was willing to undergo). It seemed like end days, so i treated them that way: i resumed writing fictional stories, making up proxy characters for the love i wasn’t getting. I already had very few friends and had hardly done much of anything outside the house for years. I spent my days in my grandfather’s comfy chair (not very comfy in reality), typing and typing. It was my sanity, my personal self-psychotherapy. I still do that today as much as i’m able, and it still fulfills those roles. I have finished several shorter novels, novellas, novelettes, and a short story or two (per the word counts i saw on Wikipedia). Several epic length novels are mostly written. All remain unpublished, and may forever if i can’t stay alive long enough to finish them.
Returning to subject matter apropos of why you’re here and the purpose of this forum, i treated my CD solely through diet. Let’s see how i did.
Cramping events (partial block unless otherwise noted):
- 2 in October 2010 (one from far too many tortilla chips, the other from too much quantity + wheat & dairy)
- 1 in November 2010 (“inappropriate foods”)
- 1 in December 2010
- 1 in January 2011: full block with vomiting (liquid then dry heaves). Instead of Aleve, took one Hydrocodon-Acetaminophen, which did not work.
- 0 in February 2011
- 6 in March 2011. My notes indicate that i never gave my intestines a chance to rest after the first event, and kept challenging my system with wheat and yeast. There was a lot of stress this month.
Around this time my mother had a “small project which should only take a few weeks” related to two rental houses of hers. The houses were so profoundly messed up (dangerously close to slumlord condition) and L.A. traffic so slow that i wound up spontaneously living about 40 miles from my actual home, for about 7 months, doing major remodeling. My mother paid me and a jobless friend of mine from the middle of California, who lived along with me on the premises, so in a sense, i did have a job for 7 months in 2011. Electrical (rewired one house), plumbing (re-piped one house), tons of maintenance and repairs, HVAC, painting…we did it all (nearly). My mother is one of the few “employers”for whom i could work who could be understanding of me becoming suddenly non-functional due to cramping at unpredictable times and days.
I managed my Crohn’s mostly by sticking to a very restricted diet: rice-based vanilla protein powder with Trader Joe’s Rice Drink (like Rice Dream), sliced turkey, various potato chips and related, boxed soups (Imagine and Trader Joe’s), juices (i don’t remember if they had V8 VFusion juices then or not…something like those), and various candies (they dissolve and pass through my system easily). That was pretty much the whole range, and i certainly didn’t have more than a couple of those at any one meal (and since college i’ve usually eaten 2 meals a day instead of the normal 3). Let’s see how i did:
- 1 in April 2011 (i happened to be at my real home, having too much food and stress)
- 2 in May 2011
- 2 in June 2011. First one may have been a full block, set off by eating out (only time i remember doing it the whole time i lived there) and getting vegetarian potstickers, which had uncooked veggies. This one ran several days. Apparently i held off on the Aleve until the 3rd. day, after which it cleared quickly. Second one was suspected to be from a week of yeast and wheat items, set off by an excess quantity of solid foods.
- 0 in July 2011
- 1 in August 2011. This is where i learned that, for me, taking one Aleve makes no sense: didn’t stop the pain, but did stop me from vomiting. For me, 2 or none.
- 1 in September 2011, set off by a whole panoply of forbidden foods (lunch the day before with peas and carrots, then dinner with hot dog bites, then ice cream). This one happened at my actual home, the day after jury duty.
- 0 in October 2011.
- 0 in November 2011
The project wrapped up at the start of December. I returned to my actual home.
2012 was not bad, except for November.
Cramping events (partial block unless otherwise noted):
- 2 in December 2011. Closely spaced, so likely no full recovery between them.
- 0 in January and February 2012
- 1 in March 2012. Two days without my usual aloe & prune juice (half and half, in the afternoon) and one day without digestive enzymes, and a meal with small carrots and peas seem to have set things off (away from home).
- 2 in April 2012. The first one was light, so i didn’t take any Aleve. It didn’t clear for the next 5 days, but didn’t get worse until the 5th. day. Took two Aleve then, which seems to have helped stop it.
- 1 in May 2012
- 2 in June 2012
- 0 in July 2012
- 2 in August 2012. My notes say that the gurgling (borborygmi, apparently, i’ve learned from the wiki) kept going for another 11 days from the first to the second event, indicating that the first one never really cleared up.
- 1 in September 2012. This was 9 days after the last one in August, and the notes show that once again, there was no full clearing of restriction gurgling between the events.
- 2 in October 2012 (moderate to heavy, but not full blocks)
- 4 in November 2012. No clearing between the first in Nov. and last in Oct. Restriction nearly all month, not getting better between events. Some stressy days. I was losing hope.
- 0 in December 2012: i realized i had not been taking the digestive enzymes correctly for a long time, if ever. Taking them with meals per directions cleaned things right up!
2013 was a very good year:
- 0 in January 2013
- 1 in February 2013
- 0, March through June 2013
- 1 in July 2013 (light)
- 1 in August 2013 (heavy dehydration was involved)
- 0, September-December 2013
2014 was mixed:
- 0 in January 2014
- 4 in February 2014. Apparently i was not patient enough to give my intestines a rest from solids, so they never really opened back up and events kept recurring. Arguably it was one event lasting several weeks, intermittently.
- 0 in March 2014
- 2 in April 2014. The first was from extreme stress which could not be avoided.
- 0, May-August 2014
- 1 in September 2014
- 1 in October 2014
- 3 in November 2014
- 2 in December 2014
2015 has not been very good so far:
- 2 in January 2015
- 2 in February 2015 (not well controlled; might be related to expired Aleve)
- 1 in March 2015
- 2 in April 2015
- 1 in May 2015 + a whole new abdominal pain i’ve never felt before (the reason i’m here on the forums) which made me think i’d met my end (further discussion in the blockages thread). Went straight onto a hard liquid diet after this for several weeks, with very gradual solid reintroductions. I should note that i have noticed i’ve been gurgly nearly all of 2015—that’s new, and indicative of things possibly closing up. Inflammation? Scar tissue? I don’t know.
- 2 in June 2015, through the date of this message. Really one event over two days where i took Aleve each day, so i counted it as 2 events.
Review
On the basis that partial- and full-block cramping events are to be avoided (since they apparently add to scar tissue), my results are mixed. In terms of avoiding what i consider poisonous pharmaceuticals, many of which suppress the immune system (which i believe is counterproductive, at least for my disease), i have been doing well: average of same or fewer cramping events than when on the most recent meds (circa 2009-2010). No one, including me, is going to say that i’m in, or have been in, remission.
A more careful analysis of the food logs (last 2 years) might yield additional insight. I’m not seeing a pattern, other than i’ve gradually reduced the number of options i have. Up until this year, frozen salmon fillets or patties and similar frozen fish (thawed and cooked, of course), were staples which worked well. Over the past few months, they have not been passing through me. Even with the food log, what my body will accept from day to day (in terms of solids) remains an elusive mystery to me. I’ve had far too few vegetables in any form (including liquid) in recent years, especially since 2010, and far too much sugar and chocolate. My excuse for the sugar and chocolate has been that sometimes those are the only solids i can eat (they dissolve fully before hitting the blockage), and holistically, my mental health is a major part of my overall health equation. I’m currently taking a break from refined sugar and chocolate and related sweets/candies, to find out whether or not that helps in the post-big-event (the one this May) world. Looking into juicers and juicing (here and elsewhere).
For me personally, emotions play a giant factor in my digestive condition. Restriction is always worse during periods of higher stress, though it is confounding because there is a long-term averaging of stress over days and weeks in terms of the inflammation, so sometimes by the time it manifests i’ve already forgotten about whatever was stressing me so heavily.
If i had some way of handling major, unexpected, sudden traumatic medical emergencies, whether doing what regular people do and going to the E.R., or shooting myself, or whatever else, I’d likely be more at peace now. My romantic notion of walking up into the hills to die did not work out in May, and because i’m quite healthy outside of my Crohn’s and my depression, would likely have taken a painfully (literally) long time to play out—days or weeks. The power to freely make choices regarding my body is important to me, to the point where i have eschewed insurance even when i had a job and the means to pay for it. I don’t see any way for me to have that power, other than doing what i’m doing or waking up a billionaire—anyone anywhere else between these extremes is constrained. Poor people like i have become are highly constrained, placed into servile roles, in effect like children. My choices may kill me soon, and painfully, but at least like a state slogan, i will have lived free, or died.
Thank you for reading. Best Wishes to you all, always.
))Sonic((
