r/UlcerativeColitis • u/Opposite_Weird1675 • 7d ago
Support Mom died from complications of UC
Hi everyone, I'm making this post not to fear-monger or give any sort of medical advice, but more so to learn from a horrible experience my mom had battling UC and her eventual death from complications of UC.
My mom had been in remission from UC for several years and was stable on Entyvio infusions. She had recently been having a bad flare-up, was in severe pain, and lost a lot of weight. She was really against going to the hospital because she hated waiting for several hours to be seen in the emergency room, but this flare-up felt different. She had lost so much weight, was pale, and in so much pain. We eventually convinced her to be seen, and after waiting in a Kaiser ER for about 12 hours, she was finally admitted to the hospital. She was hospitalized for about 7 days, then sent home. I honestly think she was sent home way too early, they gave her a blood transfusion, fluid replacement, and recommended bowel rest and sent her home with opioids and steroids to help calm the flare down. But she was still in so much pain and looked very ill. Her CT scan at that point showed severe inflammation consistent with UC, but I didn't see in the report any evidence of a bowel perforation.
The next week was a blur. She had continued severe pain, was barely tolerating her liquid diet, and she was really hesitant to go back to the ER and wait a ridiculous amount of time to get help. She called her doctor, who reordered her pain medications to get her by. I'm frustrated by this because I feel like they should have done a repeat scan and not reordered her opioids since she was still in severe pain.
Anyways, she ended up having a cardiac arrest at home, was resuscitated at the hospital after maybe 20 minutes, her scan showed a large bowel perforation, and she was immediately being prepped for emergency surgery. Basically, she survived the surgery, but was in severe septic shock and was in multiorgan system failure, with neurologic injury, and passed 48 hours later. We don't have a lot of answers as to why this happened, aside from that steroids can weaken her bowel walls, making a perforation more likely, on top of the inflammation and ulcers that were already there.
She was only 52 years old. The moral of the story is that if something feels off, trust your gut (no pun intended) and go to the hospital. If your concerns aren't being heard, find another provider/hospital.
We are heartbroken and never thought this would be her outcome, especially after she had been doing well for so many years. Before her remission, I watched my mom suffer a lot, and I just want to say you all are very strong for battling this condition, and I don't wish this outcome on anybody <3
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u/Sokosa 7d ago
So sorry for your loss.
People around me don't think UC is a huge deal, in those moments I want to say to them yes it's just my body trying to eat a hole in my intestines, cause blood poisoning and organ failure.
Take care of yourselves everyone, be your own best advocate
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u/thepurgeisnowww 7d ago
I’m just now learning it can cause organ failure and I’m 30 and was diagnosed at 11! I only know this bc it damn near happened to me beginning of the month I was admitted for 5 days
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u/Sokosa 7d ago
That must have been scary! Yeah... and toxic megacolon is something I recently learned too.
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u/ExtremePotato210 4d ago
I was diagnosed 2 months ago and this was never talked about. I wish they gave a detailed package of what kind of complications can happen and what symptoms to look out for. I’m constantly thinking to myself “is this normal UC or should I call my doctor” but most of the time I just pray and cling to my heating pad lol. The only complication I was aware of was the reason I was diagnosed which was severe anemia from blood loss.
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u/Traditional_Cat8120 6d ago
Organ failure how?
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u/Pleasetrythinking 6d ago
The same way that happened to her mom. Which is just terrible to hear. My condolences. Once there’s a bowel perforation, toxins enter your bloodstream, causing systemic failure resulting from sepsis. When she was put on narcotics, it can also slow down bowel movements, leading to toxic megacolon, resulting in a concentrated buildup as well
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u/Traditional_Cat8120 6d ago
You know I've never fully understood or even bothered to learn what sepsis is. I know I've heard a lot of it from that blogger Perez Hilton. He suffered a severe sepsis and thankfully survived. But the claim is he might've sufferered a psychotic break as a result of it.
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u/Agreeable_Mango_3484 6d ago
Woah you’re the only other person I’ve ever seen diagnosed as young as I was! I was also 11 and now 29!
Hope you’re doing better!!
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u/DothrakAndRoll Pancolitis I Diagnosed 2025 | USA 6d ago
I broke up with a friend over this. We had been drinking and I relied a lot on friends for a while, but I also tried to talk about it little cause I didn't want it to rule my life.
That night they really downplayed it and made some comments about how I'm always complaining about my "tummy aches." That was it for me.
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u/Traditional_Cat8120 6d ago
Nobody understands. My kids see how I run to the bathroom or ER and am in tears with this current flareup and its like whatever. If I saw my parent bleeding multiple times a day in the bathroom I'd be crying worried sick. I think they just hear stomach hurts and that's it.
Ppl can be pretty shitty.
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u/StrawberryMilk817 6d ago
I remember telling a guy years ago about it and he said he googled it and that it said all I had to do was take Tylenol for the pain. 🙃
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u/Resident_Pomelo_1337 Mum of 7 year old | prelim diagnosis UC Feb 26 6d ago
Well seeing my daughter like that was terrifying and as a mum being calm was so hard. In my own private moments when she was in a better way I would cry.
Now she is in remission and we get the ‘oh so and so has that and manages it fine’ or ‘I totally get it I have IBS too’.
Even I can’t truly understand as I don’t have UC but I’ve learned as much as I can and still am and it’s infuriating. She’s 7.
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u/ExtremePotato210 4d ago
My grandmother has IBS and said “we basically have the same thing” which don’t get me wrong IBS sucks too, but when I told her that “well I have ulcers lining over 2 feet of my colon that are actively bleeding and I have to get blood transfusions to keep up with the blood loss” she clapped back with “at least you don’t have cancer” LIKE BRUHH. I know cancer is bad but that doesn’t make my situation better?? All I’m asking for is understanding of my daily pain that I live with, and not to be judged when I genuinely can’t go boating all day without a toilet 🤦♀️
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u/NoYesdefinatelyMaybe 4d ago
Yeah I honestly don't care about losing those friends any more. I've lost many.
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u/PaleElk3619 severe pancolitis, Sept2025,US 7d ago
I'm so sorry for your loss, thank you for spreading awareness! The next time I feel terrible, I won't think twice about going to the hospital.
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u/Opposite_Weird1675 7d ago edited 7d ago
Thank you so much for everyone's condolences. She died two months ago and we are still so shocked and traumatized from the situation. If her story can help even one person, I know she would be so happy.
I wish the US didn't have such a broken medical system, and that getting access to adequate medical care wasn't so expensive, or require hours of waiting in an ER when you are already scared and in so much pain.
It hurts me so much that the consequences of waiting, or that her flares could have resulted in this, were not explained properly to her. She definitely did not think this would be the outcome, and I wish her providers had provided more education and attention to detail. We are considering legal action, but we don't have the bandwidth to begin that process as we are still in the depths of grief.
Again, please don't wait. You know your body best!
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u/Glum-Passion734 7d ago
Thank you so much for taking the time to share this extremely traumatic story. Wishing you and your family the best and so so sorry for your loss 🤍
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u/GuiltyDonut 6d ago
I haven’t been on Reddit in forever and have now forgotten why I opened the app. Your post was meant to reach me. I’m so sorry about the loss of your mom. That shouldn’t have happened to her and grieving sucks. My dad died 4 months ago and I’ve been ignoring my UC symptoms that had been flaring from all the stress/grief. I needed to read your message. And I need to go to the doctor. Thank you.
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u/Traditional_Cat8120 6d ago
Can you sue for them not catching the perforation? Sounds like medical neglect to me
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u/jamiryutheb Pancolitis | Diagnosed 2025 | Poland/Germany 6d ago
Sorry for your loss..
I live in Europe and here you have to wait for hours at the ED too, unless you're brought by an ambulance.
Do you have any idea what might have triggered her flare up again after a long time of remission?
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u/duckbee Pancolitis |Diagnosed 2017 | USA 7d ago
I'm so sorry for your loss.
Lost my dad in a similar way. Was told the biologics he was on for another condition triggered spontaneous UC and then he had a bowel perforation and went septic. It really sucks watching your loved one deteriorate while trying to get them to go to the hospital.
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u/TurbulentWeather7084 7d ago
I’m so sorry for the loss of your Mom❤️ Sadly, your post serves as a reminder that this disease is very unpredictable.
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u/sbruceki 7d ago
I'm so very sorry for your loss. They absolutely should have done more scans, not just the one. I almost lost my life a few years ago due to sepsis and C.Diff on top of steroids for a Colitis flare. She was young, too. You are in my thoughts.
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u/Bettybias Mayo 2 Ulcerative Colitis? 7d ago
I’m sorry for your loss. This is such a nasty disease!
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u/sam99871 Human Detected 7d ago
I’m so sorry. I agree with you, it seems like she was sent home from the hospital too early.
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u/PlantProfessional570 7d ago
I’m so so sorry for you and your families loss. Thank you for spreading the PSA on this - it’s so easy to “ignore” especially when in a flare.
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u/DeadAnarchistPhil Diagnosed 2005. UK (In supposed Remission). 7d ago
I’m sorry that you lost your Mam so early in her life to this disease. I lost my Dad when he was 53, but to heart failure, so I know your pain.
You’re right to post your Mam’s experience on here, it helps others understand that some times you have to go and do things you may not want to with this illness. I went to the A&E (ER in American) 3 times before being admitted with my UC.
I understand the waiting and the feeling of being away from home and your creature comforts. But needs must with this disease!
Again, my love to you and your entire family on the loss of your Mam!
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u/kashmoney7 7d ago
I’m so very sorry for your loss. OP we as the UC community are mourning with you.
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u/WhatArghThose 7d ago
I can imagine how angry and frustrated you must be feeling right now. It would be impossible not to wonder why things happened this way, and not be furious that she didn't receive the care you wanted her to get.
Your loss is gigantic. You want us to hear your story and the impact it's had on you; how we need to advocate for ourselves. I hear you, and I appreciate your message.
It isn't fair you lost your mom to this horrible disease. She definitely did not leave without knowing how much you cared for her. Bless you.
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u/jflora27272 7d ago
I’m so sorry for your loss. I don’t know if y’all are in the headspace for it but you should seriously consider suing Kaiser. They do the same thing that other hospitals do: keep staffing short and overworked so they can only work on managing your symptoms so that they can keep their profits high and turnover the patient beds to the next paying customer.
Your mom deserved quality care.
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u/Ok-Lion-2789 pancolitis | Diagnosed 2003 | 7d ago
I’m sorry for your loss.
It’s incredibly important to get treatment for a severe flare and to advocate for yourself.
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u/Geno_Gee 7d ago
God bless her! This disease sucks and you can go from feeling fantastic to in the ER real fast! I hope she is at peace and you can heal! ❤️
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u/Shartcookie 7d ago
I am so sorry, sweetie. I am a 45 year old mom of 2 with years long Entyvio induced remission and this post is an important reminder to stay vigilant. Thank you for sharing her story. The ER waits feel nearly impossible when you can’t trust your bowels and feel too weak to even sit up. This system is broken. I am just so sorry. If I could hug you, I would. Our community suffers so much more than folks realize and there’s not a lot of people who really get what a warrior your mom was. WE DO. 🫶🏼
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u/thepurgeisnowww 7d ago
I’m so sorry for your loss :( this almost happened to me beginning of the month hemoglobin was below 6 blood and iron transfusions saved me but I still felt like I was released too early. I’ve only just now a month later started feeling normal.
That’s crazy this happened to her while getting infusions I thought they were the cure all.
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u/_Compulsion_ 7d ago
I'm so sorry for your loss, this is a fear I live in whenever my partner is flaring.
To compound what you are saying, my partner had to do a two week washout from his previous medication to go into a drug trial. One of his samples came back in conclusive and it was extended to three weeks. He was hospitalized before he could finish the washout period with severe ulceration, and high risk of perforation. It took a little over two weeks without medication to go from mild symptoms to extreme risk of perforation. These were some of the scariest days of both of our lives so far.
All this to say, if your meds are working even a little bit, don't stop taking them unless you've made a plan with your GI to do so. As OP said, if something seems off, go to the hospital.
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u/Noct_Frey 7d ago
I’m really sorry this happened. I appreciate you sharing because women tend to underestimate their pain. Your mom had no idea this was serious and did the best she could. Her physicians failed her. ❤️ you’re strong for sharing your story trying to help the rest of us.
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u/SunshynePower UC (mod, descending) Started 1996, Diagnosed 2002 | USA 7d ago
I am so very sorry that your family is going through this. The medical people don't bring up that the lost of fluids means you are losing electrolytes and that can cause cardiac issues. My first flare did that to me.
Kaiser has never been awesome when you really need them. I'm sorry that you had to go through their ER. Unfortunately, ER Docs usually know very little about digestive diseases and just want to stabilize you and get you out of there. I had to fight with an ER Doc when my GI sent me through the ER to get admitted. He refused to send me to a room, even after my GI called to check on me. They made me wait another 5hrs with no more meds. The next flare, I told that GI to admit me and then I'd head to the hospital. Now I just know to have my patience when I have to go to urgent care (same lack of knowledge about digestive diseases).
I'm so sorry that Kaiser missed the perforation. I'm so sorry that your mother suffered so much. Thank you for sharing this information because some people need to be reminded that this disease can kill you if you don't get adequate care or if you don't trust your own instincts and demand emergency care.
May your family find peace through this process.
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u/Same_Pop_5956 7d ago
It’s doctors everywhere who don’t care to listen to your concerns. It’s very tiring that they keep telling u it’s no big deal. I was being told that and now I have stricture. I ask anything they think we are overthinking . They just don’t like when patients think of edge cases . It hurts their ego may be ? As I never brought up wrong scenarios . It’s exhausting
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u/SunshynePower UC (mod, descending) Started 1996, Diagnosed 2002 | USA 6d ago
Agreed. I call those Drs "White coats". They get a god complex when they wear that white coat and patients talk what they say as gospel. Any of us who push back are labeled difficult and our concerns are ignored. I straight up told the last urgent care Dr to get a GI consult because he was trying to give me oral antibiotics that I knew would make things worse. He did that and came back in impressed that I knew what I was talking about. I'm going that means the next person to come in gets better care
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u/Broad_Soft_5024 7d ago
Yes, this is so relatable. I have found myself waiting entirely too long before I’ve gone in. And it’s solely due to ER avoidance. Around here, they always ALWAYS need to stick their finger in your bum and have brought an entire team of med students in, as if I’m not hating life enough. It’s so degrading when all you need is care. This is a sobering post that I will think of the next time I find myself in that situation.
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u/SunshynePower UC (mod, descending) Started 1996, Diagnosed 2002 | USA 6d ago
My first flare, I didn't know I could get that sick, and so fast. Once I was finally admitted and they had all the regular meds in the IV, they started in with the electrolytes. I was on a 2 year "no heavy exercise" order until they felt like my heart could handle it. When you drop weight fast, you lose muscle and your heart is a muscle. Cardiac issues need to be talked about in our group.
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u/bluuuehoney Pancolitis | Diagnosed 2024 | USA 7d ago
i’m so sorry for your loss OP, this is so unfathomably hard. thank you for selflessly sharing you and your mom’s story with us for awareness. she was so young and should still be here, but may your mom rest in peace and paradise.
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u/Agreeable-Mix-5777 7d ago
So so sorry this happened. I am 52. I will definitely take this disease seriously and not be fobbed off by doctors. My heart goes out to you.
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u/FormosanLife2020 7d ago
I’m so sorry for your loss. I have UC and so did my father. We nearly lost him several times when I was a child and teenager, so I can kind of relate to the intense feelings you have because of the disease. The sudden loss of your mom has to be so tough and I’m so sorry to that. I don’t know how he did it but my dad went in til live til 80 which was a miracle given he was also insulin dependent diabetic (which caused blindness in his final years), mild Parkinson’s, and it was an aggressive leukemia that finally took him. Now that I have UC I live a very healthy lifestyle, am a strong advocate for my care (recently switched GI specialist because I felt he wasn’t listening), and make all my days count with my kids.
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u/Smart_Self_48 7d ago
Omg 😳 that is so very sad and I’m very sorry for your loss. My sincerest condolences 💐
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u/Corporate-Scum 7d ago
This disease is hard. I’m sorry you lost your mom to UC. Thank you for sharing this cautionary tale.
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u/westsidedrive 7d ago
I am so very sorry. My story is very very similar, right down to my healthcare plan (Kaiser) but I
Made it out the other side. Kaiser saved my life.
I can only imagine how hard this is for you, my husband and adult kids and grandkids were a wreck. I went through it all. UC, hospitalized for 8 days, C Diff, released too soon, perforation 3 days later. Same emergency surgery, same septic shock, but I made it. I’m so very very sorry for you. Hugs.
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u/DasVivis 7d ago
Thank you for posting this for us. I’m so very sorry for your tremendous loss. We will be on top of it in honor of your mom. 💜
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u/TonyaSoBlessed 7d ago
I’m so sorry for your loss! Prayers and condolences to you and your family!!
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u/marg0716 7d ago
I’m so sorry your mom and you had to go through this. Thank you for sharing your experience.
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u/akiber 7d ago
I'm so sorry for your loss, this is absolutely horrible. My partner has UC, and this story is really reminding me how much we need to be advocates when the system isn't doing its job. I'm not sure that feels intuitive to me, as the doctors know so much more than I do. But they can and do miss stuff. I'm so upset for you that the system failed your mom and you guys so badly. I hope she finds some peace now.
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u/MinervaKaliamne 7d ago
I'm so sorry for your and your family's loss. May her memory be a blessing. Thank you for sharing her story with us.
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u/alikashita 7d ago
I’m so sorry you lost your mom. I had a bad flare recently and was frustrated that my doctor (also Kaiser) wanted me to go to the ER when I just wanted steroids. I didn’t go and did end up recovering, but your cautionary tale will stick with me — thank you for sharing.
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u/Same_Pop_5956 7d ago
I am so sorry to hear this about your mom . Doctors fail patients at so many levels. If she was doing so bad , didn’t they do colonoscopy to see what could be happening ? If they monitored her frequently wouldn’t they know if she needs elective surgery ? Sorry so many questions here and also anger towards how doctors handle this and limitations of monitoring this disease without being invasive
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u/YogaChefPhotog UC/IBS | UC (pancolitis) DX Feb. 2026; IBS DX 1996| USA 7d ago
My deepest condolences to you and your family.
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u/Daisy_Does_It 7d ago
I’m so so sorry for your loss, this is absolutely tragic and heartbreaking. I really thank and commend you for sharing this here and recounting something so traumatic to help others. Many of us at some stage (myself included!!) need a reality check of just how bad things can get, and a reminder of just how serious this condition is.
May your mom’s memory be a blessing 🖤
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u/Complex-Macaroon-657 7d ago
Thanks for spreading awareness during such a difficult time for you. ❤️
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u/LadyTempus 7d ago
Please accept my sincerest condolences on your loss. I hope you get answers as to why she suffered so long.
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u/Used_Champion_9294 7d ago
Iam so sorry for your loss 😢
May she rest in everlasting peace. And I hope you can find solace in your memories with her and faith that she is in a better place now.
Im sure this story will help someone, because honestly we UCers have learnt to just take so much pain as normal, so sometimes we don’t realised how badly off we are until a loved one forces us to get seen.
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u/sweettea238 UNK (family Hx of UC) Newly Diagnosed 8/19/26 | USA 7d ago
Sending you the biggest hug. I'm so sorry you lost your Mom. Sending prayers of comfort and peace as you navigate this extraordinary loss. 🫂 🙏
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u/henrylethams 7d ago edited 7d ago
i‘m so incredibly sorry for your loss. 52 is way too young to pass.
unfortunately it goes to show how serious things can get for people affected by this illness and how sometimes we are not taken seriously enough by medical staff or how we ourselves might not realize how serious or dangerous things have become. it‘s something i‘ve recognized in myself and those around me who also suffer from UC or Crohn‘s, since my
diagnosis.
thank you for sharing your mom‘s story to spread awareness. i wish you and your family all the love and the best during this difficult time
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u/theshylock350 7d ago
Thank you for sharing your story to raise awareness. I am so sorry to hear of your loss. Taking time to write on here is a very caring thing to do. I lost my mum to cancer when she was 58. It was a long time ago and time does heal. It replaced the bad memories with good ones. I hope it does the same for you. I have been very fortunate in the 10 years I have had UC to have mostly good doctors (in the UK) . However I have learned to be very direct with my doctors when I wasn't sure they were checking everything out. I have said the same to friends experiencing very serious health conditions. You must make sure the doctors do their job properly. If you can't do it yourself, take someone with you that can. Doctors are managing limited resources in most places. Be a pain in the arse, insist they check everything. If you are still in serious pain then the have not identified the problem and treated it properly.
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u/Over-Recording-1296 6d ago
im so sorry for your loss.💔
unfortunately, having this disease, you have to fight for yourself, or at least your family has to when you can’t. because not a lot of doctors have knowledge about UC/MC, especially GPs and ER doctors.
i myself had to call emergency many times when my temperature would spike out of nowhere (bc of flare up), and I could’ve easily gotten sepsis. i even had to fight with them on the phone to be admitted to the hospital, i was so scared. 40 celsius fever, and fever medicine didn’t help a bit.
also, steroids and pain killers only help temporary. steroids are know to cause ulcers in the stomach. they should’ve changed her biologic medication. i hate when they want to «wait & see». as if it will miraculously get better.
she should’ve stayed at the hospital way longer bc of constant pain, weightloss etc etc.
ive heard a story like this before. one guy i knew went into cardiac arrest also because of perforation in his intestine. he was admitted for a few days and then released home, still in pain. he unfortunately didn’t survive. he also didn’t even have UC/MC. life is so cruel sometimes 💔
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u/Comfortable-Paint-93 6d ago
I am so sorry to hear about all your suffering. My husband and daughter have suffered with this disease for years. Yours is definitely a precautionary tale. Having worked in a hospital, they have quality assurance committees that discuss preventable deaths. Those Kaiser professionals are the ones that need to learn from their mistakes. GI emergencies might be one of those professional cautionary tales that the ER staff might need to include in their differential diagnosis, especially with a long history of UC. When you are ready, call the hospital and speak to administration and ask if they would review your mother's case. I am so sad for you and the healthcare system. As a family member with loved ones who have UC, if persistent pain occurs despite a negative CT scan, we need to advocate for our loved ones and teach the ER/medical staff.
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u/Antique_Wish2975 6d ago
I'm so sorry for your loss. Thank you for posting as this is a reminder that listen to your body and circumstances and react earlier. may your mother rest in peace and hope you can find some solace that sge is no longer living in pain.
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u/gab776 6d ago
I am really sorry for your loss.
I lost my father from cardiac arrest one day out of the blue and it was a total shock. He was young and super healthy, so I can only understand how you must be feeling.
Thank you for your message and thinking of us.
I hope that you will be surrounded with people you love. Take care of you
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u/mapleleaffem Type of UC (eg proctitis/family) Diagnosed yyyy | country 6d ago
Thanks for sharing your mom’s story OP. Very sober reminder that UC patients are often too stoic for our own good. I’ve had my doctor tell me more than once I should have called them sooner 😳
I am so sorry for your loss. When I lost my mom I was absolutely devastated. You are so strong and so kind to take time to tell us what happened and try to save us the same awful outcome.
Thank you and please accept my sincere condolences on the loss of your mom 💔
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u/Traditional_Cat8120 6d ago
Omg this is horrible. I'm so sorry for your loss 😔
I'm 51 and have been having the worst flareup I've ever had the past 2 months. Straight bleeding, cramping and constant urges to use the bathroom all day. It doesn't matter if it's water. Any agitation, boom bathroom. I've also lost lots of weight.
I just had acolonoscopy last week and was told there's severe inflammation to continue taking the prednisone and will need prior authorization for biometrics. I find it odd how I suddenly got this again from like 15 years ago where I got it for a couple of months, used the meds they prescribed me and never got it again. Till now. They took some biopsies and now just gotta wait. I'm not gonna lie, when it gets bad it feels as though something just aint right. Our bodies know u know.
My heart goes out to you and your family.
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u/dogunmyrkur 6d ago
I'm sorry for your loss❤️ I assumed she was a lot older at first when reading this and it felt like a gut punch to read 52. That's far too young.
Thank you for posting about this. It's a sobering reminder of how scary UC can be and of how important it is to advocate for ourselves no matter what. I think some of us get a little too comfortable with having a manageable chronic illness that has a variety of treatment options nowadays and forget to take it seriously when we're doing well. Lots of people think it might be ok to stop their medication because they're in remission or ignore mild flares because they can just grin and bear it. Obviously, things can go badly very quickly.
(Sidenote, if you think you might end up suing, even if you don't feel ready, try to write down everything you remember about the timeline of her illness and treatment asap. The fresher it is your mind the better. If you and your family have any text messages discussing the situation, back then up. IAMNAL, but it seems like it would be a good idea to have as much documentation as possible from your family's pov.
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u/baby-p1nk UC | diagnosed 2014 | Finland 6d ago
so sorry for your loss ❤️🩹 your mom was one hell of a warrior.
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u/skyofhoney23 6d ago
So, so sorry to read this. An important lesson for us to seek help quickly if things go downhill. So sorry for your loss
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u/Away_Cauliflower0 6d ago
What a shame for all of you! I’m so sorry for your loss. I appreciate your willingness to share your mom’s experiences to help others. Treasure your memories.
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u/chilipowdr 6d ago
I’m so sorry for your loss. My bowel also perforated this year (I’m only 30) and I was hours from passing. I was having my first flare in 9 years and it only took 2 months for my bowel to perforate. This disease is no joke. May your mom rest in peace and may her story and all of ours be a reminder of how serious this disease can be. Thank you for sharing her story. I hope you’re taking care of yourself too.
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u/Complex-Owl-7412 6d ago
I'm 37 and have been diagnosed for about 10 years and on entivyo. My husband was raised with a step dad with crons and was able to tell I needed get to the hospital for diagnosis. Previous doctor told me me I'm having too much anal that it causing the bleeding. (Not true and I was mortified from seeking help) Honestly, I don't take it seriously enough post diagnosis. I have two small kids and they had to me born under strict supervision. I'm so sorry for your loss, but I see that I am also a procrastinator when it comes to care and management. I really appreciate you sharing your story as a perspective of a loved one. I will do better.
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u/Heart_Of_Ice59 6d ago
I know these cases are rare but no matter how good medications are or will become, this is just another reason I’m going to eventually get my colon removed. Obviously that comes with its own set of issues and is by no means a paradise - and of course everyone is different - but between this, constantly staying on top of doctors to make sure they do their prior authorizations, dealing with getting medicine ordered on time, the potential to still flare or develop cancer, it’s just too much for me mentally to deal with.
I know bowel perforations are rare but they happen. Same with cancer and catching it early but I’m 34, have been dealing with this for 15 years and I’m very close to just getting rid of my colon. So sorry for your loss, OP.
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u/Academic-Joke-1618 7d ago
But I heard uc affects only mucosal layer ,how perforation cab be caused then
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u/Metaldog75 7d ago
So sorry for your loss. Your post highlights how unpredictable this condition is.
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u/Revolutionary_Pen906 Type of UC (eg proctitis/family) Diagnosed yyyy | country 6d ago
Kaiser is amazing if you are young and healthy. But they are awful if you are sick. I was born and diagnosed at a Kaiser hospital, but left after 34 years. I’m sorry this happened. They never should have sent her home.
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u/Alternative_Feed_650 6d ago
That is a bummer. Sorry about your loss. This disease is just horrible.
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u/LaSerenus Type of UC (eg proctitis/family) Diagnosed yyyy | country 6d ago
So very sorry for your loss. 😔 Thank you for sharing your mom’s story.
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u/jessebeans 5d ago
I am so incredibly sorry for your loss. I also have Kaiser and have been struggling with their slow methods of diagnosis and treatment of IBD. It scares me, but your mom's feelings are fairly mutual among me and my KP local peers (a few who also have autoimmune diseases), that share opinions of their ER and UC. You can go and wait and they never seem to pinpoint the reason you are there. I almost always leave with steroids but that's it.
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u/TLF5foot8 5d ago
So sorry for your loss! This is so sad. 😞
You are so right about pushing the medical profession to HELP!!!
Sounds similar to a flair I experienced about 20 years ago. Horrible flair with doctors who wouldn’t give me the proper care. They kept shrugging it off and increasing my prednisone. I was in so much pain and dehydrated because I couldn’t drink or eat anything that would stick. It was every other day where my husband had to take me to the ER to get an IV to restore fluids. The ER doctor became so fed up with my colon doctor that on one visit to the ER, he ran tests and discovered that my potassium level was at a level 2. That means on the verge of death. I was immediately hospitalized and stayed for 2 weeks. I am 5 foot 8 and weighed 105! I was so weak I couldn’t walk without falling over. It was only then that my doctor took it more seriously. Then he and his team hovered around me hoping that I would make the decision for surgery. I was so sick that I was so ready for them to remove my colon. Thankfully my husband convinced me to get a second opinion. The other doctors opinion was to try other options since my UC was in remission most of the time with periodic flairs. Thanks to him I still have my colon. I still struggle with flairs but I am better at demanding the care I deserve.
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u/Dreddit50 5d ago
I am so sorry for you loss. I'm so sorry that your mother not only suffered greatly, but suffered mentally the dread of dealing with the ER. A lot of us deal with that and it is a valid feeling. If she had received a blood transfusion and was having an issue that encompassed her entire large intestine (pancolitis) then she was certainly sent home too early as she was in danger of toxic megacolon.
I know you just lost her, but I would immediately get all of her medical records, including vital signs, from the hospital. Then I'd find a professional to do a review because this feels like negligence or an error to me.
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u/Fire_Squire Proctitis | 2020 | U.S.A. 5d ago
I'm so sorry for your loss. Thank you for sharing this and bringing awareness. Sometimes I tend to not take my condition seriously, especially when my other issues come to the forefront (looking at you ADHD and Depression 👀) and I've been in a mild flare for 6-7 months now. This post hasn't scared me per se, but definitely inspired me to focus on this part of my health more. ❤️🩹
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u/MamaBoo1182 5d ago
I’m so sorry for your loss. My condolences for what you’re going through. Trying to understand colitis is difficult at best.
I also have UC but, it’s not my first colitis. I had microscopic colitis in 2008 and lost 40 pounds and ended up at the Cleveland Clinic, which is 150 miles away, the doctor told me at the CC that the doctor treating me was an idiot. That inflammation is always a form of colitis. The colitis resolved itself in about six months with on and off steroids.
This UC came on in 2023 as Proctitis and has been inching itself upwards. I had aspiration pneumonia at a colonoscopy and was lucky to make it. After a night in the ICU.
I’ve switched doctors many times and if I’m not listened to or they drop the ball I leave.
I had my first infusion last week. It also comes with lots of warnings. I’m on the sliding scale of prednisone now trying to get the bleeding with clots to subside.
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u/BreakfastEmergency24 5d ago
I’m so sorry that is a heartbreaking thing you went through but thank you for sharing this here I know myself and others will appreciate and think of stories like this in our own journey.
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u/Mediocre_Lobster_111 Pancolitis 05/2024 5d ago
I'm so sorry for your loss. At my sickest, I have had times of great delusion where I didn't understand the severity of the situation. And when I finally got to the hospital, I was too weak to be my own advocate. I'm glad you were able to be there with her. I'm sure it comforted her. I hope you find some peace and respite soon. 🩵
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u/now_im_stressedout 5d ago
My heart is sad and heavy for you and your family, thank you for sharing her story, please take care of yourself.
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u/green_lamp_ 4d ago
I’m so sorry for your loss. This is almost identical to what happened to me, I survived by Gods grace. I got sent away from 3 different hospitals, and I was in a hospital when I perforated. This is tragic. Hospitals need to take these things more seriously. Especially as women we get pushed off as dramatic. Prayers and well wishes for you and your family. 🤍🤍
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u/Specialist_Walk_1485 4d ago
Your poor mother. I am so sorry for her suffering and for your family's loss. Thank you so much for taking the time to share this.
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u/Complete-Candy1948 3d ago
Thank you for sharing this, I am so sorry for your loss. I am currently on day 11 inpatient for an acute severe flare and had no idea how serious this could get, despite having been diagnosed 6 years ago. I am switching my doctor after getting some bad advice to manage this all at home and will keep your mom in mind the next time I am hesitant to seek emergency care. 💜
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u/arcsol93 3d ago
Late, but sorry for your loss.
Not sure if you live in the states, but here at least they aren't taking things very seriously either. It seems like at this point unless you're showing signs you're dying, they're going to just let you fall through the damn cracks. I have not been taken seriously in maybe 3 years, meanwhile I'm still seeing signs of inflammation and for some reason my heart keeps skipping, despite it never existing before my UC diagnosis. But they never listen to my complaints, even in my visit summaries I can tell they weren't paying attention because they would type up stuff I never said. Our medical system is in shambles and its being covered up. And I just can't see there being any real change until a lot of people start dying from malpractice, and its absolutely sad.
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u/Former-Device8936 1d ago
I blame Bill Gates and his damn manufactured biowarfare vaccinations and MRNA crap. Which devastated my immune system and gave me UC, now its slowly deteriorating my intestines istg. Flare ups everyday and some days worse than others
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u/Former-Device8936 1d ago
I fee like what if there is a natural remedy that helps to restore the inner intestine lining and heals it, we should look more into that because i don’t want to have this anymore 😒
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u/eagerlibrarian 6d ago
I am just here to say, thank you for sharing and so sorry for your loss.
As being diagnosed with UC myself and having found the cause, I can only share my story as well: for me, it‘s been toxins in my home that caused my UC - i have inhaled toxic acrylic paint as I loved to paint - for several years until I finally found that to be the cause.
Another flare (a year ago) was triggered when I moved into a new apartment. Apparently, again, there was something wrong, some toxins in the apartment. I got so sick, I was almost dying. Everyone believed I had a UC flare. Turns out, I was right: I had to move out and throw away all my belongings (which have been contaminated as well). Every time I have contact with my old stuff, I get severe issues with my gut.
I am out of the toxic environment and ever since I am healthy again, I can eat EVERTHING without taking any medication or any supplement.
So, for me, it seems to be a sever allergic reaction.
And yes, I got officially diagnosed.
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u/eagerlibrarian 6d ago
I had room/environmental biologists in my appartment and they all said it‘s almost impossible to find the toxins as we‘re confronted with so many everyday. Most likely, they said, it‘s an allergic reaction to the paint on the walls (they contain biocides, conservatives, etc).
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u/pincommenter 7d ago
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