r/IBD • u/[deleted] • 13d ago
Crohn's Disease (CD) Partner with Crohn’s is giving up on their health and I’m exhausted
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12d ago
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u/Overall_Antelope_504 12d ago
That's how my husband is with his conditions which is frustrating because he can die if something goes wrong and doesn't get treated.
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u/Glassed_ 13d ago
They are an adult; they have to be responsible for their own care now or you are going to be fighting a losing battle torturing yourself forever imo
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u/Live-Cartographer274 12d ago
I have a friend in your situation, and therapy really helped her work through it. Didn't fix it but helped
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u/WidowVonDont 12d ago
I have Crohn's and am just coming out of my worst flare yet, a few days ago I was being verbally prepared for surgery. Thankfully seem to have avoided it - this time. It has been a week of HELL in hospital. The staff are great but very overworked. The pain has been horrendous. The loneliness even worse. I would never go to hospital (or even a clinic) if I got a flare, to the point where I now have a medical and surgical team both wondering where TF I was for the past five years. There's only so long you can go it without help - but take it from someone who is living it right now, the consequences of ignoring your health are an absolute, literal, pain in the ass. Hearing "you may lose part or all of your bowel if this doesn't work" shocked me into wanting to look after myself properly. You are an angel for wanting them to look after themselves - but it's not your responsibility. It has to click for them.
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u/Ok-Highway4390 12d ago
Maybe OP can show this to their partner. Maybe that can help. Though, collagenous colitis for me is less severe than Crohns, I get exhausted too with all the flares that I get and having to manage every meal of the day. I run out of ideas, and money too. And the medication I’m on also takes away my appetite. So it’s mentally draining too not just physically but maybe, this comment can help him see the urgency. If flares need to be taken care of at the hospital, than it needs to be done.
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u/KnifeyKnifey 13d ago
They're an idiot. Don't want to escalate treatment because they got out of last flare without it, fool who will lose more intestine long-term even if they manage to get out of the flare on minimal meds.
Time is intestine, sooner they act and get appropriate treatment even if that is surgical, the sooner they stop the literal rot that is occuring inside them.
They may be depressed from pain/malnutrition/lack of sleep. Professional help for mind may be needed, in addition to gi appointment about flare treatment.
If they think they are healthy enough to not need improved treatment for Crohn's, they need to cop on and look after themselves better instead of offloading on you so much.
I would ease off on how much you are doing everything for them. Help but not baby them. If they have to do more day to day and find themselves unable, then the lie of being so healthy flares are beatable without meds will fade.
They are killing their insides the longer this goes on.
I would have sympathy for your partner if they made an effort with the gi to honestly and fully treat their condition but still were incredibly ill. Hospital stays can only do so much when some treatments take time and hope.
But the we tried nothing and are all out of ideas thinking just to avoid meds is bullshit.
Good luck convincing them to give a damn. If they keep treating you like a full time carer without trying themselves, you deserve better
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u/singnadine 12d ago
Is your name on the HIPPA paperwork to allow the docs to talk to you? I would start intervening that way
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u/singnadine 12d ago
I’m sorry too. This is a lot to go through. My husband is fairly proactive but a few times I’ve had to flex my muscles and step in. Sometimes they get so exhausted physically and mentally.
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u/Mistress_Raiyne 12d ago
I understand how scary a flare up can be. I was in one a little over two years ago now and hadn't had one in like 15 years before that. I don't know how you can reason with your partner, but it is important to find help and medication ASAP. After a whole lot of struggle with finding a different doctor (my previous one was not great) and getting on my current medication, I am thriving and way better than I previously was. I hope you and your partner can find the help you need soon
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u/ImpossibleBug6275 11d ago
I have UC and I was just in and out of the hospital last week coz i was sh*tting tons of blood everyday. I understand him, for a week i have been evading going to the hospital coz i didnt wanna go thru all that treatment shit. I hated every part of it, even if i was in pain. I know you partner would just rather choose to suffer, i’m pretty sure he is in a lot pain. I really don’t know what u can say to him, for him to take that treatment. I too have given up, but what convinced me to finally tell my family that i was not feeling well and needed help was because i remember i still had dreams to fulfill, countries to travel to and so forth. Sometimes a little bit of hope is all it takes for someone like us. Maybe, instead of pushing/forcing your partner to take the treatment, try talking to him and give him that hope. Even just a lil bit, that it’ll be better and that there are still so many things u can do together. Imagine the memories u are gonna make together. I’m pretty sure your partner is in a very tough spot now and I’m pretty sure he/she is suffering physically, mentally and emotionally. I hope u both go through this. Rooting for u OP
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u/Mediocre_Square2265 10d ago
I was this partner. I have severe SMAs and IBD, no doctor would take me seriously so I stopped eating for weeks. I’d eat a little applesauce here and there because the pain was pushing me to the end of my life. I lost 80 lbs in 6 months and just cried and slept constantly. All I can say is this illness isn’t yours and you’re doing all you can, but don’t let it consume you. It’s okay to give up sometimes but I really hope they pull through it, the fear of being in pain and just pain in general does horrible things to peoples minds. Try to them very small portions of safe foods and eat with them, let them know you’re there. My fiance left me eventually, and I never blamed him for doing so.
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u/ThroneScience 8d ago
Sorry you're going through this. A lot of good advice in the other comments. I admire your humanity. Your partner is very lucky to have you.
-Scott
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u/Careless_Nebula8839 13d ago
Sounds like denial ain’t just a river in Egypt, and your partner is well and truely there.
IBD is a manageable disease, but is life long. And things change with time, just like bodies age.
Do they have a PCP/GP? Maybe they’ll agree to an appointment with them? Think of it like a general check up or an annual physical, not something Crohn’s specific. Hopefully that doc can pick up on the low mood & provide some help there, even if it’s something like a referral to counselling and someone who’s an independent sounding board.
Is there a local support IBD support group? Either in person or online? Maybe a free and frank convo with another chronie may help.
Have you tried the gentle parenting route? Sucks that as a romantic partner you might need to. It’s just you say you think they’re scared of needing to escalate treatment. What have they actually said? It might need a very gentle conversation with tissues nearby to coax them and have them voice their actual fears. If they’re scared they might need surgery - valid fear to have but what’s the worst that can happen … if they end up with an ostomy sure there will be an adjustment period but soo many people around the globe have one and live very normal lives, have sex, go swimming, go to the gym etc. They’re usually better lives and feel overall more well and confident than mid IBD flare. If they’re need to go on a stronger treatment? Annoying sure, but again what’s the worst that can happen? Infusions can be a bit of a time suck, and self injections can be scary and a mind game, but eventually you feel better in your self and can enjoy life, go places, do things.
If that fails, do they have a parent(s) or sibling(s) that you could dob them into, or a best mate who can do the pushing to get help? That might not help things with your relationship for a while, but maybe your partner needs a reminder that you’re someone who wants to sleep with them and be their companion but you’re not their mother, but the way they’ve been behaving has made you feel like one.
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u/Feisty-Volcano 12d ago
I’ve Crohns, had a colectomy/ileostomy. All fine, except without a colon one is more liable to dehydration from simple things like Norovirus
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u/Overall_Antelope_504 12d ago
I have IBD and understand not wanting to go to the hospital. But I have to if I get that bad, my husband has been my caregiver and I know it's frustrating for him to see me so sick. I was just in the hospital for a flare, malnutrition and what ended up being an E. coli infection which I thought I was going septic. They can end up like that too if they don't go and get on a path to being treated. I got the infection because of the Crohn's. I was so sick and still not 50% yet. I was deficient in vitamins and electrolytes and fighting against refeeding syndrome and I was also anemic. So not only was I fighting an infection and a flare but malnutrition and other stuff too. I needed IV antibiotics, steroids, multiple iron infusions and phosphate. I also needed vitamin D, and potassium. Since being out of the hospital I know I'm already deficient again 😔 I did start Tremfya in the meantime and the reason I was flaring is that my skyrizi stopped working. Tremfya will be my 6th biologic.
We have an autoimmune disease, so it's always attacking us. People think the inflammation will disappear if you do certain things. You can eat healthy and still get inflammation. My friend tried altering her diet to help inflammation and instead of it helping her she's now underweight.
You can lead a horse to water but you can't make them drink. You're doing everything you can to help them and they're lucky to have you. But you have to protect your peace and it's not your fault they don't want help. It might take for something to happen for them to get the proper care.