Hey all!
First, thank you for having the forum around. It's awesome. So many people here who want to support each other. This is difficult to say the least.
I'd like to share my little brother's story.(Warning, it's LONG/Partial Vent)
Roughly about 9 months ago, my mom calls me to tell me that my brother is having major stomach pains. Every time he eats, he gets a burning sensation - like his stomach is on fire. In our family coming up, we didn't have much choice but to go to a hospital since we didn't have insurance and didn't have any money. The hospitals here in the US cannot turn you away - and if you didn't have insurance, at least one would tell you about the medical programs available or medicaid - something to that affect.
Anyway, I rush to my mom's house to find my brother had been self-medicating himself with over-the-counter drugs. Using what he, mom, and grandma thought were best...which sometimes isn't best but it's what you can do with what you got. He's on the floor and dizzy, nasuea, and cannot hold anything down. We rush to the emergency room, they stabilize him and send him home (gave him a bit of a GI cocktail).
Things unfortunately don't get better...
Turns out that almost anything he eats, causes him to either have diarrhea or vomits it up. He's taking pepto-bismal and it 'coats his stomach'. He's always having this 'burning' in his stomach and his lower left part of his abdomen. Temporarily takes the pain away, but now he stops passing bowel movements. I start thinking - whatever is happening at my moms, I can't continue to rush 10 miles every other night to take care of this. So I decide to take him to my apartment to look after him.
I start him on a PPI after talking with the pharmacist. It takes away the burning sensation for a while but then it flares back up with whatever he eats. He stops passing a bowel movement for DAYS at a time - which sent red flags that something was definitely wrong with his bowels and it was out of my league. I fought with myself thinking that I could probably research this and find a fix. There had to be a way to fix this without spending exorbitant amounts of money. I spoke with my best friend in Australia who was bouncing questions off her family as well as the experience she's had with stomach related issues. She told me - 'This is not about me, it's about him, he needs medical attention. You cannot fix this on your own..' She was right - I needed help. She and I decided to go in on the cost of a colonoscopy. With no health insurance, we knew it was going to be costly.
I start looking for health insurance.
Health Insurance...F*&&ing ridiculous. The problem is that he couldn't afford health insurance in the first place. We didn't know what we were dealing with so there was never a diagnosis. He was healthy as an OX before February and then this happens. He started getting stomach pains shortly after Taco Bell and I'm thinking that he has a bad case of Taco Hell stomach. Blue Cross turns us down because he 'didn't follow up with the GI'. I knew with this we were going to come out of pocket. So I end up looking at other health insurance agencies before setting up an appointment to the GI.
The GI felt like a joke. Although they cut us a major break (the cost was about $800 on top of the $400 I had to pay previously for the endoscopy that was done before I was involved), he gave us the prep and told him to take it to prepare him for the procedure. We prepared and 24 hours later he told us that he was just 'constipated'. He had a blockage and the prep was too poor to where he could see some lesions. However because there was stool in the way, he couldn't get his camera past it. So he wanted us to follow up again for another colonoscopy. Meanwhile, my brother is complaining of leg pain that mysteriously started to show up. I knew I couldn't afford another procedure and though we thought we had come to the root of the problem (impaction??), it turns out this was just 1 part of a string of complications. His prescription? 'Drink a bottle of Magnesium Citrate a day for a week and attack the impaction aggressively'.
So he drank... and drank... and drank... and he passed nothing but loose bowel movements. The GI's explanation? He's passing it because liquid is getting around the stool and not moving the stool. All sound plausible but not probable. Meanwhile, he's getting smaller... still not holding anything down, and his leg pain gets worse. We go to several hospitals - they start asking us questions like 'Has he been tested for HIV? AIDS? He looks so dehydrated. He looks bad.' NO SH*T! He's been losing weight like crazy, I feel completely helpless and no one seems to know ANYTHING! All the hospitals could do was stabilize him with pain meds, fill him with fluids and send us home. I got that down to a science. ER can only help with getting you stable - they CANNOT do anything about GI related issues unless it's life threatening.
Fast-forward to August. By this time, we had gotten some insurance of some kind and started sending bills to them (went through I CAN network). Though they're not wanting to investigate the last 5 years of previous medical history and have been turning down claims left and right. We've gone to see a second GI, whom told us that he wasn't impacted, started him on Nexium - which calmed down his acid related issues - thank God for samples! However, he was still very weak. We went to a doctor who, of course, said the same damn thing 'He looks bad, has he been tested for HIV, AIDS, etc.'? Having to repeat the same tests several times, he's been poked, prodded, violated by fingers, stuck in the arm many..many..many times... One hospital (Sentara Careplex in Hampton, VA), gave him a DVT (and thank God it wasn't a serious one as that is life-threatening) and they didn't acknowledge until 4 days later AFTER he was admitted, AFTER we addressed the issue MULTIPLE times during his admittance. I really wanted to go for legal advice but I'm afraid that costs money I don't have. I researched his leg pains heavily and found that he was most likely having neuropathic issues since he had lost so much weight in less than 6 months at the time. We went to see a neurologist and turned out I was right. He lost all feeling from his kneecap down in his right leg. His left leg was starting to exhibit similar issues. He had to use a walker for assistance. He was dying in front of me and still.. in August... noone had answers.
Then, the day of my ex's daughter's funeral, he wakes up telling me that something was wrong. He felt something completely different this time. His fever had spiked. While I knew something was wrong, I still didn't register how bad it was... I honestly didn't think it was *that* bad because we were surviving. Some days were better than others. He had his pain meds and nexium as well as carvedilol because his heart was racing all the time. I knew he hadn't drank anything that morning so I knew he was dehydrated. I gave him a large cup of water with Tylenol Cold and Fever, left him my work phone and had him lay back down to get some rest. After I got back from the funeral 2 hours later, I check on him and he's resting. His fever's dropped. He wakes up after I check on him and I ask if things are ok? He's still not feeling right at all, something is definitely different. I ask if he wants to go to the hospital right now and he says yes. So we rush to the hospital. We get there and I start to think that they're going to do the same thing. I go through the history, and the doctor decides to do something different - he pushes on his abdomen a bit and it feels firm near the top, it's distended... He immediately puts in an order for an x-ray and after the x-ray is done, he informs us that there is air where there shouldn't be. There's a call to the on-call surgeon and we re in emergency surgery.
5 hours later...
I don't find out he's out of surgery because the surgeon completely misses that I'm there. I'm talking to my best friend in Australia, who stuck by me through all of this for support. I don't think I could have made it through without her. I go upstairs at 7am to find he's out of surgery. I pester the nurses to page the surgeon to give me a run down of everything that has happened. They then begin to tell me it was the worst case of Crohn's they've seen. First time I hear a doctor utter the word. I ask if that is the diagnosis and he states that he wasn't 100% but the chances were pretty high - 'If it walks like a duck, and quacks like a duck' were his words. They sent the pieces of the small bowel they removed from him to their resident GI for analysis. In the meantime, they had him heavily drugged up - even going as far as giving him an epidural. He still was in a lot of pain. 7 days he healed and day 8 he formed a fistula. They had to keep him on TPN while waiting for his fistula to heal. During this time, we stayed in that hospital for 1 month. Visiting him for a few hours before moving on with my day. Thinking this was going to be over.
It wasn't.
They then decided to move him to another hospital in Richmond that had better facilities. We were here for another month. This time he underwent a second surgery after the first fistula had healed. This was to create the stoma. So now he's got an illeostomy.
Now he's home with me and I'm monitoring him through the night. It's week 2. Still a long road, he's still very weak, working on making sure he's drinking water (lots of water) but that takes a lot to do. Making sure he's eating a lot but that takes a lot of energy for him to feed himself. Making his lunch during the early morning before work. Making sure to take care of him at night. Awaiting another emergency run as he'll need fluids through his veins - he just feels like drinking and eating is just running right to his bag - not absorbing anything. Still feeling helpless trying to help him. We'll be going for a short follow up with his surgeon on Tuesday and meanwhile, I'll continue to fight with the insurance company and continue to file for medicaid and any other financial assistance (disability - been working with his social worker at the hospital he was at - great help). It's still a long road from here and I've learned more about the digestive system than I thought I'd ever learn in my life.
I thank you all for listening. I'm still very new to this, still fighting, for him since he doesn't have the energy to do so, and learning more about myself in the process. Friends are most times better than my own family because they seem to want to help more. Otherwise, at the end of the day, the weight is on my shoulders because he can't do this on his own - and who else will?
First, thank you for having the forum around. It's awesome. So many people here who want to support each other. This is difficult to say the least.
I'd like to share my little brother's story.(Warning, it's LONG/Partial Vent)
Roughly about 9 months ago, my mom calls me to tell me that my brother is having major stomach pains. Every time he eats, he gets a burning sensation - like his stomach is on fire. In our family coming up, we didn't have much choice but to go to a hospital since we didn't have insurance and didn't have any money. The hospitals here in the US cannot turn you away - and if you didn't have insurance, at least one would tell you about the medical programs available or medicaid - something to that affect.
Anyway, I rush to my mom's house to find my brother had been self-medicating himself with over-the-counter drugs. Using what he, mom, and grandma thought were best...which sometimes isn't best but it's what you can do with what you got. He's on the floor and dizzy, nasuea, and cannot hold anything down. We rush to the emergency room, they stabilize him and send him home (gave him a bit of a GI cocktail).
Things unfortunately don't get better...
Turns out that almost anything he eats, causes him to either have diarrhea or vomits it up. He's taking pepto-bismal and it 'coats his stomach'. He's always having this 'burning' in his stomach and his lower left part of his abdomen. Temporarily takes the pain away, but now he stops passing bowel movements. I start thinking - whatever is happening at my moms, I can't continue to rush 10 miles every other night to take care of this. So I decide to take him to my apartment to look after him.
I start him on a PPI after talking with the pharmacist. It takes away the burning sensation for a while but then it flares back up with whatever he eats. He stops passing a bowel movement for DAYS at a time - which sent red flags that something was definitely wrong with his bowels and it was out of my league. I fought with myself thinking that I could probably research this and find a fix. There had to be a way to fix this without spending exorbitant amounts of money. I spoke with my best friend in Australia who was bouncing questions off her family as well as the experience she's had with stomach related issues. She told me - 'This is not about me, it's about him, he needs medical attention. You cannot fix this on your own..' She was right - I needed help. She and I decided to go in on the cost of a colonoscopy. With no health insurance, we knew it was going to be costly.
I start looking for health insurance.
Health Insurance...F*&&ing ridiculous. The problem is that he couldn't afford health insurance in the first place. We didn't know what we were dealing with so there was never a diagnosis. He was healthy as an OX before February and then this happens. He started getting stomach pains shortly after Taco Bell and I'm thinking that he has a bad case of Taco Hell stomach. Blue Cross turns us down because he 'didn't follow up with the GI'. I knew with this we were going to come out of pocket. So I end up looking at other health insurance agencies before setting up an appointment to the GI.
The GI felt like a joke. Although they cut us a major break (the cost was about $800 on top of the $400 I had to pay previously for the endoscopy that was done before I was involved), he gave us the prep and told him to take it to prepare him for the procedure. We prepared and 24 hours later he told us that he was just 'constipated'. He had a blockage and the prep was too poor to where he could see some lesions. However because there was stool in the way, he couldn't get his camera past it. So he wanted us to follow up again for another colonoscopy. Meanwhile, my brother is complaining of leg pain that mysteriously started to show up. I knew I couldn't afford another procedure and though we thought we had come to the root of the problem (impaction??), it turns out this was just 1 part of a string of complications. His prescription? 'Drink a bottle of Magnesium Citrate a day for a week and attack the impaction aggressively'.
So he drank... and drank... and drank... and he passed nothing but loose bowel movements. The GI's explanation? He's passing it because liquid is getting around the stool and not moving the stool. All sound plausible but not probable. Meanwhile, he's getting smaller... still not holding anything down, and his leg pain gets worse. We go to several hospitals - they start asking us questions like 'Has he been tested for HIV? AIDS? He looks so dehydrated. He looks bad.' NO SH*T! He's been losing weight like crazy, I feel completely helpless and no one seems to know ANYTHING! All the hospitals could do was stabilize him with pain meds, fill him with fluids and send us home. I got that down to a science. ER can only help with getting you stable - they CANNOT do anything about GI related issues unless it's life threatening.
Fast-forward to August. By this time, we had gotten some insurance of some kind and started sending bills to them (went through I CAN network). Though they're not wanting to investigate the last 5 years of previous medical history and have been turning down claims left and right. We've gone to see a second GI, whom told us that he wasn't impacted, started him on Nexium - which calmed down his acid related issues - thank God for samples! However, he was still very weak. We went to a doctor who, of course, said the same damn thing 'He looks bad, has he been tested for HIV, AIDS, etc.'? Having to repeat the same tests several times, he's been poked, prodded, violated by fingers, stuck in the arm many..many..many times... One hospital (Sentara Careplex in Hampton, VA), gave him a DVT (and thank God it wasn't a serious one as that is life-threatening) and they didn't acknowledge until 4 days later AFTER he was admitted, AFTER we addressed the issue MULTIPLE times during his admittance. I really wanted to go for legal advice but I'm afraid that costs money I don't have. I researched his leg pains heavily and found that he was most likely having neuropathic issues since he had lost so much weight in less than 6 months at the time. We went to see a neurologist and turned out I was right. He lost all feeling from his kneecap down in his right leg. His left leg was starting to exhibit similar issues. He had to use a walker for assistance. He was dying in front of me and still.. in August... noone had answers.
Then, the day of my ex's daughter's funeral, he wakes up telling me that something was wrong. He felt something completely different this time. His fever had spiked. While I knew something was wrong, I still didn't register how bad it was... I honestly didn't think it was *that* bad because we were surviving. Some days were better than others. He had his pain meds and nexium as well as carvedilol because his heart was racing all the time. I knew he hadn't drank anything that morning so I knew he was dehydrated. I gave him a large cup of water with Tylenol Cold and Fever, left him my work phone and had him lay back down to get some rest. After I got back from the funeral 2 hours later, I check on him and he's resting. His fever's dropped. He wakes up after I check on him and I ask if things are ok? He's still not feeling right at all, something is definitely different. I ask if he wants to go to the hospital right now and he says yes. So we rush to the hospital. We get there and I start to think that they're going to do the same thing. I go through the history, and the doctor decides to do something different - he pushes on his abdomen a bit and it feels firm near the top, it's distended... He immediately puts in an order for an x-ray and after the x-ray is done, he informs us that there is air where there shouldn't be. There's a call to the on-call surgeon and we re in emergency surgery.
5 hours later...
I don't find out he's out of surgery because the surgeon completely misses that I'm there. I'm talking to my best friend in Australia, who stuck by me through all of this for support. I don't think I could have made it through without her. I go upstairs at 7am to find he's out of surgery. I pester the nurses to page the surgeon to give me a run down of everything that has happened. They then begin to tell me it was the worst case of Crohn's they've seen. First time I hear a doctor utter the word. I ask if that is the diagnosis and he states that he wasn't 100% but the chances were pretty high - 'If it walks like a duck, and quacks like a duck' were his words. They sent the pieces of the small bowel they removed from him to their resident GI for analysis. In the meantime, they had him heavily drugged up - even going as far as giving him an epidural. He still was in a lot of pain. 7 days he healed and day 8 he formed a fistula. They had to keep him on TPN while waiting for his fistula to heal. During this time, we stayed in that hospital for 1 month. Visiting him for a few hours before moving on with my day. Thinking this was going to be over.
It wasn't.
They then decided to move him to another hospital in Richmond that had better facilities. We were here for another month. This time he underwent a second surgery after the first fistula had healed. This was to create the stoma. So now he's got an illeostomy.
Now he's home with me and I'm monitoring him through the night. It's week 2. Still a long road, he's still very weak, working on making sure he's drinking water (lots of water) but that takes a lot to do. Making sure he's eating a lot but that takes a lot of energy for him to feed himself. Making his lunch during the early morning before work. Making sure to take care of him at night. Awaiting another emergency run as he'll need fluids through his veins - he just feels like drinking and eating is just running right to his bag - not absorbing anything. Still feeling helpless trying to help him. We'll be going for a short follow up with his surgeon on Tuesday and meanwhile, I'll continue to fight with the insurance company and continue to file for medicaid and any other financial assistance (disability - been working with his social worker at the hospital he was at - great help). It's still a long road from here and I've learned more about the digestive system than I thought I'd ever learn in my life.
I thank you all for listening. I'm still very new to this, still fighting, for him since he doesn't have the energy to do so, and learning more about myself in the process. Friends are most times better than my own family because they seem to want to help more. Otherwise, at the end of the day, the weight is on my shoulders because he can't do this on his own - and who else will?
