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I lost my best friend last year to Crohn's disease. He was only 33 years old and left behind a 5 year old son.
The utter helplessness in the face of such horrific suffering and interminable decline is a pain I wish nobody had to endure.
As my friend worsened, I would rage at friends and family who peddled false hope with their quack "cures", internet remedies, and religious nonsense. But he was the picture of grace throughout his final decline, warmly welcoming visits.
The last time I saw him, he wanted to just chat for a few hours. But I couldn't sit still. I massaged his feet and refilled his water bottle and shifted his body to provide a little relief from the constant discomfort of bedridden life.
At the time, I thought I was helping him. But I realized after he was gone that he was helping me, giving me something to do so that I didn't feel so damn powerless.
I don't know why I'm writing this. I haven't really talked about it with anyone. I think about him every day, and my heart goes out to anybody suffering from a debilitating disease -- both the sufferers and their caregivers. Every day becomes a fight for dignity and humanity.
If I took any lessons away from the horror of that year, it's the power of listening. Just listen. Don't try to judge or fix or explain anything.
I think I helped most when I just sat and listened. I wish I had done it more.
You are a good person. The fact that you reflected on this says so.
Don't get stuck on wishing you listened more.
Call his wife, see if she needs anything like fixing a fence, water faucets etc.
One of the hardest parts of grieving is trying to ignore all the "What if?" questions. What if I had listened more? What if I hadn't tried to fix everything? etc.
It sounds like you were a great friend. Those visits probably meant the world to him, regardless if you were massaging his feet or just chatting.
This is a great story of love. Mine is kind of the opposite...
My ex-wife got early onset rheumatoid arthritis. It took a long time to diagnose, but once we did, it was a relief to know what we needed to treat. We spent years going doctors, trying various medications and generally taking care of her health with no expense spared. Eventually, despite all of our efforts, our relationship grew further and further apart and I finally asked to separate (after about 10 years together). It was the most difficult thing I've ever done, partly because it was traumatic to let go of someone who was sick.
As crazy as it sounds, after we separated, she found a shaman in the jungles of Peru and moved there from San Francisco to be healed. Today, she shows no signs of RA (has even come back to the US a few times for 'real' testing) and she is healthy and happy. I now live in Vietnam and I'm happier than I've ever been in my life.
Despite all the difficulties, separation was the best for both of us. We are still friends and keep in touch online.
I’m curious to hear more about shaman experience as I have some anxiety-like issues that no type of medicine/ therapy seems to be helping with.
Sorry, I don't know exactly which program she went with, but she's been down there for a couple years and I think pretty well connected into it.
keywords in google are "peru jungle shaman"
involves taking ayahuasca and other jungle made substances
do your research, i think there is some definitely sketchy outfits, but there are good ones too.
Thank you for sharing your story!
To echo others in this thread, sadly, my relationship did not survive my partner's mental illness.
My girlfriend had a quite extreme form of borderline personality disorder, possibly with schizophrenia - but it's hard to know exactly because she would often be uncooperative with professionals and was often using drugs. She also didn't talk to her family, but never told me why.
Eventually, after struggling for more than five years, I threw in the towel and broke up with her. I still supported her financially, because she was incapable of work, and was trying to encourage her to seek professional help.
Within a few months, she had committed suicide and left a note blaming me for leaving her.
I found out later, after contacting her family, that she had two children by different fathers that she had left with her parents then ran away from - among a ton of other things she did to ruin the lives of anyone who ever knew her.
I spread her ashes last month with her sister who hadn't spoken to her in over 10 years.
It has hit me quite badly, and often I regret breaking up with her considering what happened, but deep down I knew I couldn't continue. It was affecting my own mental health so badly that I was struggling keeping myself afloat. The best thing for her would probably have been to call it off much sooner, before she became too dependent on me - but the guilt of breaking up with someone who is severely ill meant I couldn't bring myself to it until I could no longer cope.
As nice a story as the article is, my advice would be that you do have to consider your own life as well. If you can't look after yourself, you can't look after someone else.
my advice would be that you do have to consider your own life as well.
I think this is an excellent thought.
I am told by someone who is a professional counselor that therapists who have patients with borderline personality disorder have to reduce their other caseload significantly.
BPD is horrific. My SO has a mom with BPD and she might he the most horrible, controlling, mean, immature person I have ever met.
Your responsibility is to yourself and to the universe -- not just to your partner. I think you did the right thing of leaving her. Accountability is great, but blaming yourself for an order of destructive events (her life) is foolish.
Take care of yourself buddy. You are intelligent and caring and have a lot to offer to the world.
Your decision to break up was the right one, and not to blame for her suicide. Have you considered therapy? I dated someone who was borderline, though my relationship was not as bad or as long as you describe. Therapy really helped me untangle the manipulation I was under, and also helped me let go of feelings of responsibility for my ex's suffering.
> If you can't look after yourself, you can't look after someone else.
That is a huge point. I was in a total depression when I was with my wife. It was the most painful thing I've ever done to break up with her, but in the end (hindsight is 20/20), it was lifesaving for both of us.
I mod r/CrohnsDisease and try to make sure every text post gets at least one thoughtful reply. We’re here for anyone with IBD/Crohn’s/Colitis as well as friends & family of those who have it (since it can be just as difficult for them.)
Hello from /r/Celiac. I'll link you on the sidebar.
You are the internet at its absolute best. Thank you.
I'm a spouse of someone with IBS, and wanted you to know that those subs are fantastic. Thank you for being a good person to strangers.
Wife has Scheuermann's and Levoscoliosis (spinal deformities) and spends a large (often majority) percentage of her time in agony. American doctors refuse to give her opioids because their idea of resolving the 'opioid crisis' is to not help anyone (because the DEA is up their asses for every script they write), and since most of them haven't heard of her issues, they shrug their shoulders and recommend physical therapy, for someone who can't get out of bed. Yes, her pain has driven us to the brink of divorce on a few occasions, but we are united in our revulsion at the American healthcare system and the politicians whose meddling has shaped it.
I truly envy everyone who gets help for their mysterious or chronic illness in the United States. We're leaving next year.
Can you get meds by mail or even go buy meds every x months ?
Controlled substances usually aren't available by mail (at least not legally).
That was a beautiful and sad article. Bittersweet but the sweetness was more subtle and powerful than the bitterness. Love, I guess, is the light side of the force, and the dark side is all that is in opposition to that.
My first wife was frustrated with my progressing back problems, and when I had a breakdown after being fired she became more and more angry. One day, after I got back from therapy and told her what was discussed, she said "you're not supposed to be fixing yourself, you're supposed to be fixing our marriage!!". Other things happened, and we divorced soon after.
My partner and I are caregivers for each other. She walks the dogs when I am unable because of back issues, I do grocery shopping when she hasn't had any sleep due to being up all night because of her IBS. We sign "I Love You" to each other when we're on the phone or conference calls. We listen to podcasts together and she rewinds parts because she was intensely focused on a game, and I smile at her because I know that this is how her mind works, and it's wonderful. She understands just what being introverted is, we both avoid the grocery store and its crowds, rather than either of us being frustrated with the other for wanting to stay at home in bed.
Neither of us is perfect, and I know we both cause each other worry and stress. Just like in the article, sitting on the curb waiting for the other to make it through a snowstorm, both literally and figuratively.
I hope you all find people in your lives who accept you for who you really are, and who will be your mutual caregiver, mentally, emotionally, and physically.
What a beautifully written (yet sad) story. I have a good friend who suffers from Crohn's disease, but she keeps it so well hidden because I didn't realise how bad the disease was until I read this article.
It affects people differently so she may be better off than the person in this story, but no doubt it's a real burden to most sufferers. My good friend has it and I've watched him struggle for fifteen years now. There are alright years, terrible ones, and some in between. It's a terrible disease.
My relationship didn’t survive my ex-wife’s sickness. She had bouts with clinical depression and was at times not motivated to do anything. I did everything at home and because of her illness she was easily irritated at me and impulsive, I dreaded coming hone sometimes. We decided to split after she recovered, we couldn’t heal the relationship.
I often think about it as my weakest moment and biggest failure.
Don't beat yourself up. You pushed through this, waited for her becoming better. There's nothing weak about realizing that it can't go forward at some point in time, especially after she recovered (and not before).
If you held out until after she recovered then you saw her through and IMO you're a hero.
In November 2012 I had just turned 30 years old and my wife and I had been married for a bit over 2 years, but were together for over 6 by then. On the newer side we had a 1 year old baby girl and I had just started my new job at Google 6 months earlier.
At first I thought I had a bad stomach virus, but after 2 weeks of some very worrying trips to the bathroom I finally saw a GP and told him my problems. He gave me a few tests and told me that I had a bacterial infection called Clostridium difficile (aka C. Diff.). Which was odd, because it's usually the kind of infection that you get while in hospital, but I had been completely healthy for my whole life. He started me on a cycle of some very potent antibiotics: Flagyl and Vancomycin. After another week of worsening symptoms is when things got really bad... and really scary. I couldn't go to work that week, I still remember describing the pain like someone stabbing me in the gut with a knife and twisting.
I had to stop eating. Drinking water was excruciating. I couldn't leave the bed anymore, and the only movement I could make was to curl more tightly into the fetal position. By now my fevers were regularly spiking over 102 F, and I spent most of the night sweating myself into an exhausted few hours of sleep. After a few days of this I finally called my GP who told me to go the ER immediately. On my first trip to the ER I sat hunched over in a waiting room chair for a few hours, probably as pale as a ghost. When they finally brought me in and heard my C. Diff. diagnosis everyone put on their quarantine outfits and stayed the fuck away from me. Oddly, they only gave me 2 bags of saline IV and sent me back home.
After another few days at home, writhing in agony in bed, still unable to eat anything and barely drink anything I had to go back to the ER. This time I called my GP (who showed extreme care, and was adamant I go back to the hospital) when I got to the ER. Luckily he had done his residency there and knew a few of the doctors. This time my C. Diff diagnosis got me a first class ticket to a private room and quarantine sign. I felt mildly bad about this, because after Hurricane Sandy 1/2 of the hospitals on the east side of Manhattan had been shut down and the wait time for a hospital bed from the Beth Israel ER was over 24 hours for some people. (I got over feeling bad for others pretty soon after).
I was wheeled up to my new room and asked to poop in a bucket for another C. Diff test. Almost as fast I was hooked up to IV Flagyl and Vanco for the "big guns". That night my fever hit 105. The next morning a doctor finally came to see me for more than 30 seconds. This was the first time they told me the C. Diff tests came back negative, but "it must have been a fluke" so they asked me to poop in a bucket again. This was pretty problematic, given that I hadn't eaten anything in almost 2 weeks at this point. This continued for a few days, each night the fevers making wish I would just die, followed by doctors coming in the next day and wondering what was wrong with the damn test results. No C. Diff.
At this point the confusion of what could be wrong became an obsession. Every nurse or doctor who came in, I asked what is it. Their answer.... "we think it's C. Diff., it's just not showing up in our tests... you need more antibiotics".
On the fifth day the pain became excruciating, I was lying in bed, dead still, just trying to hold onto the edges hard enough so the pain in my finger tips made me feel anything other than that fucking relentless twisting knife in my gut. Finally someone in the hospital seemed to notice that I wasn't doing so well, and they sent me to get a CT scan. A few hours later a doctor whom I had never seen before walked into my room, he may have introduced himself, but I was so deliriously preoccupied with my pain that I have no idea. In a monotone voice with now questions he said "I have the results of your CT scan, we see some micro perforations along your large bowel and believe you have fulminant ulcerative colitis. We're moving you to the surgical ICU and may need to perform emergency surgery to completely remove your large intestine. You'll need an ostomy bag if that happens". The end. Please hold your questions until after the ostomy bag.
WTF? What did that guy just say? What is "ulcerative colitis"? Did he say "micro perforations"? Is that better than regular perforations? Just make the pain stop please. Why did it take a week to get a CAT scan when I'm already in the hospital? Why does my stomach still have this knife in it? These were most of the thoughts that quickly entered my brain.
None of those questions mattered. I spent the next 4 days laying in a cube in the surgical ICU. A very nice nurse (I sadly don't remember her name) wiped the blood from my back side each day. At 7am and 7pm the lead surgeon followed by his gaggle of surgical residents came to stare at me like a specimen. Talking about me, but never to me. Never actually making eye contact, and only glancing at me from behind their clipboards. I hated those surgeons. Never fucking once did they speak to me. Only stared, and talked about ripping out my intestine. I liked my intestine, but probably would have been OK with the idea of losing it if just any one of those doctors had explained what it would be like without it. Or why it needed to go. Or what the fuck was happening to me.
Luckily at this point, the IV prednisone that they hooked me up to seemed to be taking the pain away and I was able to hold a short conversation now. I was even drinking small sips of water like a human being again.
After my time in the surgical ICU I was sent to post-OP recovery for almost 2 weeks. By this time I loved prednisone. It was my new best friend. I could eat Jello!
When I was discharged from Beth Israel Hellhole, I mean hospital, I had been in for over 20 days. I lost 45 lbs, I entered at nearly 180lbs and left at almost 130lbs. I was still only on prednisone, because my major medical insurance for Remicade hadn't cleared yet. That would still take another 3 weeks before I could start treatment on an actual drug.
Eventually I started this new wonder drug and things got better for a little while. Unfortunately after 6 months I developed "drug induced lupus", which is less fun than it sounds.
But in those 6 months my diagnosis changed 4 times. From Ulcerative Colitis -> Crohns Disease -> "almost certainly" Ulcerative Colitis -> Indeterminate Colitis (that is an actual diagnosis https://jcp.bmj.com/content/57/12/1233).
6 years later, 6 surgeries, I've lost count of the number of hospital stays totaling almost 9 months. Failed off of 4 biologics. I eventually did lose my large intestine. I'm on my 2nd ileostomy (they put me back together once.... that turned out to be a very bad idea, and another story for another time).
In the end, it has gotten better. I'm skinny, but I'm healthy now.... mostly. My marriage didn't survive, partly for stress of illness but mostly for very different reasons.
Moral of the story... find a great doctor; don't go to the closest hospital, go to the best hospital you can find; become an expert on yourself and your disease; speak with doctors like advisors, not oracles; don't let other people tell you "what you should do", but listen to their stories and advice; reduce stress; stay active.
I still don't know what I have. My diagnosis is now "maybe" Crohn's (?). But I'm aware of it. Only my closest friends even know I have "a bag", everyone else just tells me I'm too skinny. I can deal with that comment when I eat 3 dinner plates in front of them. I don't have similar symptoms to other Crohnies. I can eat anything seemingly without consequence, my triggers are almost certainly stress related. They're also (so far) completely localized to the large intestine and lower (although I have had horrible canker sores since childhood). Luckily none of my small intestine or upper digestive tract has ever been noticeably affected (other than the canker sores). Overall I feel lucky to have great doctors now, and a (usually) positive outlook, but damn...
The psychological toll is not to be discounted either. I should have sought a group to speak with, or someone who knew first hand what this was like. I became very angry for a long time. This didn't help keep my stress levels down. I also find it hard to find the line of "am I lazy?" or "am I sick?", this question is annoyingly common. I try my best not to be a "1-uper" when someone tells me they don't feel well, but mostly I try to get them to stay away from me since the immunosuppressants make a common cold feel like malaria (I really don't like my coworkers who think coming into the office sick is what a good soldier does). Overall, it is a very lonely place.
IBD sucks
edit:
+1 for r/crohnsdisease and r/ostomy (like another poster mentioned above) both are great communities
What a terrible story, though I'm surprised they ordered more than one test for the bacterial infection.
I had a kidney infection last year around this time. I caught it early, as I had been through it before and had once left it so late that I developed sepsis (infection of the blood).
I went to the ER and told them I had a kidney infection. The intake nurse was very kind and asked me relevant questions. She seemed to be inclined to confirm my self-diagnosis: "yeah, it sounds like a kidney infection."
They got me to a bed and ordered a urine test. The urine test came back an hour later, "100% clean, perfect urine". The doctor poked at my back for a bit and assured me my ailment was mechanical! I assured her it was not mechanical. "Well, your urine test is perfect, so I don't know what to tell you. If you're still experiencing symptoms in the next couple days, just come in, but for now try to rest and not put too much strain on your back :) "
So I went home. In the next two days I developed a fever of 102 and was in excruciating pain, both in my head and my general abdominal area. I couldn't walk, I couldn't even think. My family forced me to go to the ER because I was incapable of making the decision. I genuinely thought I would die-- I thought I had already developed sepsis and would suffer brain damage and I would die. We went to the ER and they did another urine test. lol SURPRISE, I had a kidney infection! They gave me the tiniest, littlest dose of morphine that almost did nothing to help the pain, and gave me a prescription for antibiotic pills. I insisted they send me to an outpatient facility for IV treatment. "That's a great idea!" They said. Jesus.
Anyways, kidney infection was cured, but MY GOD, I would think the first thing they would do is order another urine test! Apparently the tech failed the first time and sampled it too late, which is why my urine was "pristine" (their words). No one's urine is fucking pristine!
Have anecdotally heard of many false negatives on a c diff test.
I wish you all the best, and hope that you recover and a cure is found for what ails you. Thanks for writing this. Also sharing with us the gist of your lived experience (the moral):
>find a great doctor; don't go to the closest hospital, go to the best hospital you can find; become an expert on yourself and your disease; speak with doctors like advisors, not oracles; don't let other people tell you "what you should do", but listen to their stories and advice; reduce stress; stay active.
Holy shit. I am so sorry to hear all this. I too have colitis and had to have a stomach surgery earlier this year.
My experience was not nearly as bad but it took a toll my relationship as well. I'm now single and all my health problems certainly didn't help any.
Did you find any support? A group or a therapist?
I've been speaking with a therapist for a bit over a year now. It has helped quite a bit, but I've realized that it's mostly helped me get to a better place with accepting that it's OK that I'm not 100%. But it still doesn't help so much with feeling isolated
I find facebook groups are much better than subreddit. Different demographics makes a difference.
do you have any idea what caused it ?
I too went from a diagnosis of Ulcerative Colitis to Crohns to Ulcerative Colitis and now Indeterminate Colitis. Actually first it was colitis and The specialist didn't explain what that was or that it was at all serious. Took me a while to work it all out. I researched the hell out it and pretty quickly felt like I knew more about IBD than the specialists, especially how the disease manifested in me.
I fired the first specialist after I realised he was not prescribing mt the right treatment - he was in fact a colorectal surgeon not a gastrointestinal specialist so he was also the wrong type of specialist.
Then a few months later I got sick. Really sick. I remembered a great GP; he took me seriously and referred me to an old friend who a really good gastro intestinal doc, who was ex head of the best GI ward in the state. But he was actually crap at first. He treated me like a hypochondriac (like most doctors). He organised a colonoscopy for a few months - despite saying I didn't know if I would last that long. Four days later I admitted myself to emergency unable to walk stand or sit up in bed, with a letter from the GP backing me up.
Things went from bad to worse and by this time I had blown through at least four worst case scenarios. The rest of the details are not so important - I nearly lost my colon and went onto massive doses of hydrocortisone then pred for months. Withdrawal was hell. Then a long hard recovery lots of meds. Now I am now doing great, amazingly, and am med free and mostly complete remission for 4 years.
Although my treatment was spectacularly successful in the end, I had to cut through a load of bullshit and find some good doctors. Since my private specialist was the ex head of the ward I could use that fact to intimidate (subtly) the other doctors somewhat which was very helpful in obtaining the tests I needed. Sad but true. A timely CT and then insisting on a second reader after they deemed it clear (WTF I am a grey rake that can't even sit up) is what saved my colon I believe. Second reading came back with severe inflammation in ascending transverse colon. You see, most doctors I have come across I find treat you like a hypochondriac at first and you have to subtly nudge them into taking you seriously. It's like fucking chess game sometimes and you have to be really careful what you say. Stroking their ego while actually being their director and treating them as contractors. Playing dumb, while researching the hell out of your condition so know at least what tests are required and what all the treatments are available. Mention that you read medical journals is absolutely out.
I was a lucky - I had a career as biostatstican and data scientist for 7 years in a hospital before this happened, so I was wise to just how appalling the medical profession can be when it comes to solving open problems, and gave me confidence to tackle it myself. It just should not be that way. Most doctors are not stupid though, but I believe most have their powers of creative problem solving beaten out them at med school.
My heart goes out to all IBD sufferers. If you've experienced it you wouldn't even wish it on Adolf Hitler's evil twin.
"Took me a while to work it all out. I researched the hell out it and pretty quickly felt like I knew more about IBD than the specialists, especially how the disease manifested in me."
Exactly this... doing this was the only way that I found any solace. In all of the confusion, I decided that I had to become nearly as educated as the doctors I was talking to. I didn't have to be an expert in the disease, but I did have to be an expert in "how it manifested in me" (great way of putting that).
After that, my discussions with doctors were so much more productive. My 20-30 minutes with a specialist wasn't spent on them explaining to me what I had, I already knew that part. We instead got to spend it on insightful discussions of treatment options, side effects, risks, and contingency plans. That was when I felt like I finally had some control in the matter.
I'm sorry you were treated so skeptically as a hypochondriac, I fortunately never had to deal with that. (I think it's because all of my GIs saw me at my worst at some point)
I hope you stay healthy.
Be right back. Getting out of bed to give my sweet heart a hug.
When you get something without asking is the best way to survive relationship, Thanks for sharing.
removed
That's not politically incorrect, but simplistic evolutionary thinking.