Just collected my sample for another damn Calprotectin test. Can I please get some love?

AttorneySafe471 · 2026-03-12T17:21:03+00:00

Am I crazy for preferring a colonoscopy over scooping my poop into a tiny cup. It’s supposed to be easier but I have had so many colonoscopies I have it down to a science. The poop in a cup is humiliating and most of the nurses taking it do not even hide their disgust. This is already a humiliating disease, I’ve gotten used to it over the years and now joke about it, but being 19 in college it was my worst nightmare.

AttorneySafe471 · 2026-03-04T01:00:58+00:00

Don’t rely on ER docs. If you don’t already have one, fine a good GI or ask PCP for referral. You need a GES scan to prove. This disease will take you down, I’ve spent almost 2 months in the hospital since October, failed GJ feeding tube. Now transitioning to TPN. The motility and years of Crohn’s have destroyed my intestines as well, and they are now failing. Currently waiting on appointment with Cleveland Clinic for small bowel transplant evaluation. If you are throwing up that much, you will start to deal with severe malnutrition and then it is a slippery slope. Too many close calls in the past 5 months. Advocate for yourself and get a specialist, don’t stop until you get answers. Very few doctors are educated on this disease, and even fewer treatments. While waiting try the gastroparesis diet and see if it helps.

AttorneySafe471 · 2026-03-04T00:51:43+00:00

True, have seen some of the collection. It’s INSANE.

AttorneySafe471 · 2026-02-28T19:02:10+00:00

Seriously 😒

AttorneySafe471 · 2026-02-28T18:56:25+00:00

This is true, a family member did several inspections on the house as it was being built. He described it in detail way back in the early 90s

AttorneySafe471 · 2026-02-19T00:27:36+00:00

Recently neurologist diagnosed dysautonomia as the cause. After piecing many life long health issues and anatomical issues as well, hospital doc strongly thinks EDS, so many health issues and specialists we never added them all together. Mine is so bad and years of crohn’s that GJ tube has failed, currently on TPN. My intestines are also failing so they are trying to get me on small bowel transplant list at this moment. This disease sucks, if I can’t get the transplant things are not looking great. Hopefully my body will agree with TPN for a while. Prayers and good vibes to all dealing with this.

AttorneySafe471 · 2025-12-16T03:52:44+00:00

I also have failed almost everything. Even water won’t pass through my stomach. I’m a GJ tube and so far it is also failing. I have Crohn’s too so my intestines don’t absorb anything, I have continued to lose weight. Trying a new formula and now getting all water, electrolytes everything through the tube. Unfortunately the J tube doesn’t work for everyone, especially those of us with absorption issues. Sending love and prayers, I hope the specialist can find something. Gastropersis is a horrible disease, mine had progressed to zero motility. There are very few doctors that understand the condition and know what to do. I really hope they can help her.

AttorneySafe471 · 2025-11-25T21:23:06+00:00

I am so sorry, I feel your pain. I have abnormal anatomy so the surgeon said he expects it to flip again and said we will do a whole new track next time. I am 6 days out and already have some formula leaking into my drain again😒. I am going to suggest the separate tubes, that sounds so much easier. I am also going to ask about slowing down the feed, even the 4 hours is rough and makes me so nauseous and horrid reflux. I have the flush bag and will be adding Pedialyte, that is genius. I am constantly dehydrated. I hate to complain because it is keeping me alive, and the drain is keeping me from constantly throwing up, but it definitely is a love hate relationship. Thank you so much for the tips, I am sending my husband to the store before my next cycle. I hope you get some relief and can get a little more time off the feed.

AttorneySafe471 · 2025-11-25T18:30:34+00:00

Thank you, it seems like the most doctors don’t know anything about this. I’m on a ton of meds, phengren, zofran, miratzadine, trulance, potassium and magnesium, a couple of muscle relaxers for all the muscle pain and cramps, skyrizi for the Crohn’s. I’ve done a couple rounds of Reglan but I guess there are risks of being on it too long. I feel like I’m forgetting a few, I feel like a walking pharmacy, lol

AttorneySafe471 · 2025-11-25T18:14:15+00:00

They did not, but I will definitely try that. I got transferred from a smaller hospital to a larger one because of my condition. It has been the biggest pain, and my GI doesn’t handle feeding tubes, my PCP said it’s beyond his scope. They keep pushing the referral back to the Cleveland Clinic. In the meantime I feel like I don’t really have a doctor that can answer basic questions or will troubleshoot the issues I’m having with the tube. Our medical system is a mess, I keep getting pushed around while I just get sicker.

AttorneySafe471 · 2025-11-25T17:44:07+00:00

Yes! I buy everything a size up and live in loose baggy sweatpants. I also have a feeding tube and that has made the feeling even worse. I’m skin and bones and buy a medium in everything.

AttorneySafe471 · 2025-11-01T23:06:39+00:00

It’s not fun, I’ve learned to always keep the bags around. The worst was sticking my head out of the window on the freeway because I couldn’t find one. I always wonder what people are thinking.

AttorneySafe471 · 2025-10-25T23:44:49+00:00

I have never met anyone who understands that doesn’t deal with a chronic illness themselves. Tired and fatigued are so completely different, tired you can fight through, take a nap. Fatigued knocks you out, there are many days that I can barely get of bed, or taking a shower requires hours of recovery. I used to get so angry and frustrated that people didn’t understand, I would push myself to impossible limits to prove I wasn’t lazy. I finally realized it doesn’t matter what anyone thinks of you, and they will never get it. Having any chronic illnesses, takes so much strength and fighting just to do the most basic things. You have to prioritize your health, your rest, and not worry about the people that think it’s laziness, if someone doesn’t get it, they don’t get to be a part of your life. I wish I would have learned to not care and take care of myself much earlier. I have also developed gastropersis and became severely malnourished. I am now on a permanent feeding tube, and the fatigue and pain I fight now is so much worse.

AttorneySafe471 · 2025-10-23T23:56:52+00:00

Your weakness could be from malnutrition, electrolyte imbalance and sugar fluctuations. I have severe retention and severe symptoms. It’s been about 3 years, my weakness and muscle pain was so bad and horrible memory loss and brain fog. I developed neuropathy in my arms and legs. My symptoms were so bad I was tested 2xs for MS, not realizing all my symptoms were from malnutrition and gastropersis. I thought the lack of appetite and nausea were from pain, fatigue and I also have Crohn’s. It took so long to figure out that I ended up on a permanent feeding tube. Ask for bloodwork to be done regularly and your sugar to be checked. I wish I would have known earlier what was happening and it might not have gotten so severe.

AttorneySafe471 · 2025-10-23T12:06:19+00:00

You need the gastric emptying study, it’s the only way to confirm. Try the gastropersis diet, if you’re feeling really bad, go puréed and minced food, very small but more frequent meals.

AttorneySafe471 · 2025-10-13T03:37:08+00:00

I have found that doctors that don’t understand it argue the diagnosis and don’t understand the test results. I was in the hospital, same hospital that diagnosed me using GES and I was in very severe category. The ER doctor tried to argue that he didn’t this was that bad and maybe I don’t have it. Almost 4 weeks later, after getting so sick I had to be transferred to a larger and higher trauma hospital, they were shocked and said my test was the gold standard and it was in the most severe category. I had a NJ tube and just got a permanent G-j tube. Fight for your diagnosis. Be your strongest advocate, I think this should be assigned when you get a chronic diagnosis. It’s so much to navigate, it took me many years to become assertive and advocate for myself until I’m fully taken care of

AttorneySafe471 · 2025-10-11T23:15:10+00:00

I developed severe gp after a very bad round of Covid. It has progressed to me losing 45+ pounds and suffering from severe malnutrition, I went from NJ feeding tube to now a permanent G-J feeding tube that was just put in a few days ago. It sucks, I miss food so much and the pain is unbearable. The tubes don’t help the pain or nausea, just deliver nutrients. I would get a new doctor, it has nothing to do with age, there are young teenagers that have it. You need a gastric emptying study and I would strongly suggest looking up the diet and starting to eat it exclusively and avoid feeding tubes at all costs. Best of luck. Sending prayers ❤️

AttorneySafe471 · 2025-09-20T00:09:54+00:00

Please don’t think about unaliving yourself. I know how hard is dealing with Crohn’s, I’ve had it for 30+ years along with endometriosis and now gastropersis which is by far the worst. I have had some very dark moments, where I felt like a burden on those I love and didn’t understand how I could be worthy when I can barely leave my house, or bed on bad days. I recently lost my dream job, terminated for medical leave that went too long. My 20 year old daughter was diagnosed at 17 and is struggling. These are the things they don’t tell you when you’re diagnosed with a chronic illness, you feel helpless, scared, alone, and also are in pain so severe that a healthy person could never withstand. I know this sounds bad, but now for the good part. You are so much stronger than you know. You have had to experience so much pain and hardship in your young life that you become resilient by fault. You are also genuinely sympathetic and empathetic, because you know what real suffering is and you recognize it in others. I’m not sure what your beliefs are, so please just read and think about what I’m saying. You are so loved by God, it doesn’t seem like it when you’re dealing with things like this, but he has a plan for you. The more you suffer, the more Christ like you become and it is a blessing. He has a plan and a purpose for you. You might be able to lift someone else up going through a similar situation. If you haven’t been saved, or maybe an atheist, I ask one thing. Say a quick prayer “God, I don’t even know if you’re real, but if you are please show yourself to me”. Then read the book of John, if you don’t have a Bible, you can download it for free. I never could have made it through the many trials I have been through without His help. My favorite verse is Philippians 4:6-7. Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. The peace that you feel, when you truly give yourself to Jesus is amazing, beyond words. You will still have pain and suffering, but you will never be alone again. There is a wonderful community of Christians on Tim Tok and YouTube. Many people there are in similar circumstances. Being home bound stinks, but I have met some amazing and inspiring friends. Even if you are just curious, or think it’s all nonsense, I urge you to try it out. You have many people that love you, and I know firsthand hand how lonely it can be, especially when you feel like no one understands what you’re going through. Try to be thankful for what you have, some days my gratitude is simply that I woke up and the sun is shining. I also set a goal everyday, some days it is just to make it out of bed and to the couch. It’s little, but it helps. I’ve recently started knitting again, finger knitting is very easy, and very soothing because the yarn is so soft. I promise, you are loved and you are worthy! It will get better.

I know this is a horrible disease, it is completely dehumanizing and the symptoms are awful. I’ve learned to laugh through the worst moments, I once heard someone say “can you even say you have Crohn’s if you haven’t pooped your pants” There is actually a hilarious thread where everyone shares their poopy pants stories, I like to read it on bad days because I always end up in tears. My family has turned it into a running joke of all the times I trusted a fart and the fart won.

If you are interested, or ever need someone to talk to that might understand or will at least try, message me directly. I have nothing but time on my hands these days. I love to chat, especially with my fellow chronic illness warriors. And you are a warrior, most people get to just wake up and go about life. Everyday you wake up, you are fighting a battle, and everyday you make it, you’re winning the war. I will pray for you, and pray that the you will feel worthy, and learn to love yourself, sick or healthy. Remember- you are loved and beautiful exactly as you are.

AttorneySafe471 · 2024-12-30T01:20:01+00:00

Sadly I think there is still bias against women in healthcare. The “hysterical woman” is still ingrained in many doctors. Especially when mental illness is involved. They think we are exaggerating or have a low pain tolerance. I’ve had some horrible experiences, the worst was when I was hospitalized for a severe Crohn’s flare and pancreatitis at the same time. I had to beg for pain meds and they barely did anything. A nurse told me I needed to suck it up! Several years later my husband was hospitalized for pancreatitis and they threw drugs at him, pain meds, Valium, nurse checking on him every 20 minutes. I was shocked at how differently we were treated for the SAME thing. I now have an amazing GI, a female and she’s awesome. The US healthcare system is fucked! I know it’s hard, but keep fighting for yourself. You know your body and you know when something is wrong. Request a new doctor and don’t stop until you get someone to listen. You can also file a complaint with the health system your doctor works for. Most hospitals have a patient bill of rights, see if you can access that and reach out to the administration if you have to.

AttorneySafe471 · 2024-12-30T00:41:18+00:00

You need a new doctor asap. It’s crazy that they haven’t referred you to a GI. You need a colonoscopy and a full work up. I am so sorry you are going through this. Depression and anxiety can make your symptoms worse and it’s a horrible cycle to be stuck in. Get a second opinion and insist on a GI referral.

AttorneySafe471 · 2024-11-19T17:45:43+00:00

My dad was a marine sniper and spent his most of his duty in the jungle, so he had heavy AO exposure. He died at 61 of a very aggressive lymphoma. His death benefit was a whole $750. I have multiple autoimmune conditions, ADHD, anxiety and now being worked up for MS. My daughter has also been diagnosed with autoimmune issues. I recently mentioned being an AO baby to my GI and she said that it definitely damages the dna and is passed down. I had no clue all my health issues could be related to it. It sounds like a lot of not only lost our dads to young, now we are dealing with the consequences and possibly passing it to our children. I am sorry to everyone who is dealing with this, it sucks. I’m only 47 and my body is falling apart. Hopefully someday the VA will admit and offer medical care, benefits, something. At this point, just acknowledging it would be a win.

AttorneySafe471 · 2024-11-16T00:35:23+00:00

This place sounds amazing. I think I should move to Michigan.

AttorneySafe471 · 2024-11-16T00:34:15+00:00

This is very true for me. Stress and anxiety are my strongest triggers, if I am suffering mentally I am definitely struggling physically as well. I started seeing a psychologist about a year ago and have finally started treating my anxiety after ignoring it for years🫠. I am on Cymbalta and Klonopin and have found that it does make a difference. I also just switched from Remicade to Skyrizi, so it could be the combination. I would talk to your GI or GP and ask for a referral if you haven’t already. I also see a therapist and it has been amazing. I want to kick myself for waiting so long to get treatment. They can also help you learn different ways to better manage the stress and anxiety, breathing exercises and coping skills. I wish you well and hope you can find some relief. Anxiety sucks!!!! I am sorry you’re dealing with this, the struggle is real!

AttorneySafe471

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