Crohns Warrior needs help!
2018 has been the most difficult year of my life and I need some serious help...please read my story. My chronic illness and mental health story.
The year began like any other. The New Year rang in...with hopes of the best year yet. It quickly started with a trip to the ER. I had an intestinal blockage. This was the first of many trips. I write this on Oct 13th 2018 from a hospital bed...the same bed I have been in since early August.
I made repeated trips to the ER in the month of January. Each time they loaded me up with liquid solumedrol, iv fluids and sent me home. This happened at least 5 times before I was admitted to hospital the end of January through until February 6th. On discharge my life got even more complicated. Having been given such large doses of steroids (I didn't know it at the time how terrible that would get) I turned into someone my family and friends could not recognize and it was not until March that I realized what happened to me. In a steroid induced mania/mood disorder I committed several criminal acts which caused a lot of damage to those who I wronged. Not a day has passed since those weeks in February where I did not feel deep remorse for the trouble that I caused. If you know me, you would know this: I am typically a very warm hearted and kind person. Whenever I am able, I offer any type of support that I can to anyone in need- be it a laugh, a hug, money or a shoulder to lean on. I am a lover of people, and believe that together we are stronger.I sing and love music; am a lover of the outdoors and believe that no one wants to be treated badly and that if everyone treated others how they want to be treated we would have a perfect world. Maybe one day we can get there.
In the month of March I had finally found the medical team that would ultimately help me get the answers and the testing done that would eventually lead to a diagnosis of multiple (4) strictures in my small bowel requiring major surgery. Having lived with Crohn's Disease for the past 21 years, I knew that this would lead to a hard road ahead.
In March, after my IBD nurse told me that it sounded like I had a steroid-induced psychotic break, I immediately contacted Community Mental Health and asked to get an assessment done--I had pending legal appearances later that month and into April.
This information finally gave me some perspective and an explanation as to why I was literally out-of-my-mind.
From March until June, I lived off of instant noodles, toast, supplements (vital peptide 1.5) and eggs as my broken body would not allow much by way of food for safe passage. As someone who has had a restricted diet, this was beyond the pail when it came to restriction, but it was all that I could do not to have massive blockage pain and hospitalizations.
On June 5th I went in for resection and strictoplasty surgery. When the surgeon cut me open and looked at my guts, there were 5 strictures in my small bowel, 2 at the terminal ileum and a couple feet from that, 3 more strictures. I underwent a double bowel resection, was stapled up and went to recovery.
For 4 days I sweated profusely; to take a joke from an old friend, I sweated like a hooker working 2 beds all day and night, and I knew that there was something seriously wrong. On the fifth day, after my blood work was not revealing an issue, I advocated and finally got a CT scan done which revealed that I had an anastomic leak. I was in serious trouble and the team quickly got a surgical team and an OR ready to have emergency surgery. At the time, I feared for my life, and thought I might die (ironically...you will find out why ironically later). I woke up with an ileostomy. If you are unfamiliar, an ileostomy is when they reroute your bowel to the surface of your skin and allow the damaged part of your bowel to rest. I had a loop ileostomy---with the ability for it to be reversed. Many people never have that option, and in spite of mine being temporary, at the time, I felt like I had went through enough and would rather not be cut open again....I came to that conclusion after I had 2 other procedures following that where they put perc drains into each hip and my pelvis to drain infection....I battled and advocated through this hospital admission, made friends in the Crohns and Colitis community on IG (@crohnswarriorchronicles) and thought that my battle was over...aside from recovering from these major surgeries.
Boy, was I wrong.
In the meantime, I had advocated leading up to surgery to receive my disability tax credit cheque for retro years, and had some money to carry me through for a few months. I went home on July 2nd, still in pain, and with 3 perc drains and my new ileostomy.
This is where things got even more complicated for me. I was taking dilaudid every 3 hours around the clock when I left hospital. Having some money in my account for the first time in a while, I paid some bills, and spoiled myself with some new toys...nothing extravagant, but everything adds up. I knew that the money could keep me afloat for a few months provided that I had a successful recovery. A successful recovery was the plan; weaning off of dilaudid was the plan....the plan quickly turned into another nightmare for me.
I should have listened to my intuition when it came to dilaudid. I never felt comfortable bringing any pills home; it is not that I abused them, I took them as prescribed. It was that I was on an opioid, a powerful one, that not only clouded my judgement but also gave me a false sense of normal ileostomy functioning. Many opioids are known to have a side effect of constipation and euphoria. I experienced both. I thought that I was killing recovery, I was on top of the world, kept busy, left the hospital running--- and constipation, that gave me a false sense of my new normal with ileostomy output.
Two and a half weeks went by and then I hit a wall....a big wall...the biggest wall. I took a dramatic cut of my dilaudid, I didn't realise that I should have weaned myself off of it much slower. I had experienced dilaudid withdrawal....not fun. Sweats, and heavy emotions. I started to get very low mood---at the same time, I also found out that I had a DVT, or deep vein thrombosis, aka a bloodclot in my leg and lung. Both lungs apparently....This news, along with the high output ostomy (which lead to electrolyte imbalances, dehydration and further depressed mood), thinking about my looming legal matters, and my financial future, I hit my breaking point.
I felt like there was no hope. I felt like I had hit my limit when it came to strength, adversity, fight and will.
This is a difficult thing to even talk about, let alone admit and think about. Another thing that I have thought about everyday since, and one that continues to haunt me.
On August 4th, I tried to kill myself. I took some of the pills that I had in the house, hoping that I would fall asleep and never wake up. As I said, I had enough...I did not feel like I had a future, and could no longer handle my present, or deal with my past. I thought about hurting myself for a couple of days straight, over and over, and I wrote a note and tried to end it all. The physical...I had a body that I could not manage....a bag that I was a slave to...the mental, I hit my mental breaking point...legally, terrified about my future and could not see the bigger picture..there was no picture...not one that I figured I could be in any longer.
Writing this now, I will admit that I have thought about it since, and sometimes the feelings get pretty strong. I am still unsure of how my future will go, but I do want to keep trying and keep moving forward. This is where I need some financial help to get me through the next while as I get my body and my mind back on track.
Admittedly, being in the hospital from August 5th until today, has been very very hard on the head. Why have I been in hospital this long?
I was brought into the psych unit for a few days, at which time, after repeatedly telling them that I was running a high output ileostomy and needed medical help, I was transferred to a medical unit. The past two months, the medical team did their best and have tried every medicine combination that they could think of to slow down my output. My output is still very high and today is 2.7 litres and will go over 3 litres in the next couple hours. Having such a high output, they agreed that the ostomy is medically unmanageable. The consulted surgery 5 weeks ago, and I am awaiting reversal surgery. The anticipated reversal date is Oct 16th...that is three days away. This is a victory, and anyone who is reading this would think that it is the big break that I needed, and everything will work out fine.
Well, dear reader, this is where I am at today. I am still dealing with depression. I am still dealing with anxiety. I am still very concerned about my future. I had planned on working for my landlord mid July and have not been able to do so. This work was going to subsidize my living arrangements, and I fear that when I get out of hospital, hopefully in the next 10 days or so, that I will not be able to work....and will lose my home....I cannot expect my landlord, who has been supportive up until this point to let me live there without working and without paying him rent. This stress is overwhelming and that is why I am asking for help.
I do not know how long it will take me to recover physically, and mentally, and I also do not know how long it will take me to find work following such recoveries. There are many unknowns in life, everyone's life....and I describe my year not to garner sympathy, but to share my experience; it might help someone else who is struggling...
I describe my year to let you know that your donation will be appreciated and used to help me get back on my feet. It will allow me to stay in my home, an apartment that I've lived in for the past 5 years---it would allow me to recover and to have my bills paid for, food in my fridge and any medicine that I need. This has been a journey that went mostly in the left direction instead of the right one. I need your help. Even if you think it is a small donation, it is a big one for me.
Even if you do not want to, or are unable to donate, I thank you for taking the time to read what I have went through. I am grateful for my family, and my friends....
The year began like any other. The New Year rang in...with hopes of the best year yet. It quickly started with a trip to the ER. I had an intestinal blockage. This was the first of many trips. I write this on Oct 13th 2018 from a hospital bed...the same bed I have been in since early August.
I made repeated trips to the ER in the month of January. Each time they loaded me up with liquid solumedrol, iv fluids and sent me home. This happened at least 5 times before I was admitted to hospital the end of January through until February 6th. On discharge my life got even more complicated. Having been given such large doses of steroids (I didn't know it at the time how terrible that would get) I turned into someone my family and friends could not recognize and it was not until March that I realized what happened to me. In a steroid induced mania/mood disorder I committed several criminal acts which caused a lot of damage to those who I wronged. Not a day has passed since those weeks in February where I did not feel deep remorse for the trouble that I caused. If you know me, you would know this: I am typically a very warm hearted and kind person. Whenever I am able, I offer any type of support that I can to anyone in need- be it a laugh, a hug, money or a shoulder to lean on. I am a lover of people, and believe that together we are stronger.I sing and love music; am a lover of the outdoors and believe that no one wants to be treated badly and that if everyone treated others how they want to be treated we would have a perfect world. Maybe one day we can get there.
In the month of March I had finally found the medical team that would ultimately help me get the answers and the testing done that would eventually lead to a diagnosis of multiple (4) strictures in my small bowel requiring major surgery. Having lived with Crohn's Disease for the past 21 years, I knew that this would lead to a hard road ahead.
In March, after my IBD nurse told me that it sounded like I had a steroid-induced psychotic break, I immediately contacted Community Mental Health and asked to get an assessment done--I had pending legal appearances later that month and into April.
This information finally gave me some perspective and an explanation as to why I was literally out-of-my-mind.
From March until June, I lived off of instant noodles, toast, supplements (vital peptide 1.5) and eggs as my broken body would not allow much by way of food for safe passage. As someone who has had a restricted diet, this was beyond the pail when it came to restriction, but it was all that I could do not to have massive blockage pain and hospitalizations.
On June 5th I went in for resection and strictoplasty surgery. When the surgeon cut me open and looked at my guts, there were 5 strictures in my small bowel, 2 at the terminal ileum and a couple feet from that, 3 more strictures. I underwent a double bowel resection, was stapled up and went to recovery.
For 4 days I sweated profusely; to take a joke from an old friend, I sweated like a hooker working 2 beds all day and night, and I knew that there was something seriously wrong. On the fifth day, after my blood work was not revealing an issue, I advocated and finally got a CT scan done which revealed that I had an anastomic leak. I was in serious trouble and the team quickly got a surgical team and an OR ready to have emergency surgery. At the time, I feared for my life, and thought I might die (ironically...you will find out why ironically later). I woke up with an ileostomy. If you are unfamiliar, an ileostomy is when they reroute your bowel to the surface of your skin and allow the damaged part of your bowel to rest. I had a loop ileostomy---with the ability for it to be reversed. Many people never have that option, and in spite of mine being temporary, at the time, I felt like I had went through enough and would rather not be cut open again....I came to that conclusion after I had 2 other procedures following that where they put perc drains into each hip and my pelvis to drain infection....I battled and advocated through this hospital admission, made friends in the Crohns and Colitis community on IG (@crohnswarriorchronicles) and thought that my battle was over...aside from recovering from these major surgeries.
Boy, was I wrong.
In the meantime, I had advocated leading up to surgery to receive my disability tax credit cheque for retro years, and had some money to carry me through for a few months. I went home on July 2nd, still in pain, and with 3 perc drains and my new ileostomy.
This is where things got even more complicated for me. I was taking dilaudid every 3 hours around the clock when I left hospital. Having some money in my account for the first time in a while, I paid some bills, and spoiled myself with some new toys...nothing extravagant, but everything adds up. I knew that the money could keep me afloat for a few months provided that I had a successful recovery. A successful recovery was the plan; weaning off of dilaudid was the plan....the plan quickly turned into another nightmare for me.
I should have listened to my intuition when it came to dilaudid. I never felt comfortable bringing any pills home; it is not that I abused them, I took them as prescribed. It was that I was on an opioid, a powerful one, that not only clouded my judgement but also gave me a false sense of normal ileostomy functioning. Many opioids are known to have a side effect of constipation and euphoria. I experienced both. I thought that I was killing recovery, I was on top of the world, kept busy, left the hospital running--- and constipation, that gave me a false sense of my new normal with ileostomy output.
Two and a half weeks went by and then I hit a wall....a big wall...the biggest wall. I took a dramatic cut of my dilaudid, I didn't realise that I should have weaned myself off of it much slower. I had experienced dilaudid withdrawal....not fun. Sweats, and heavy emotions. I started to get very low mood---at the same time, I also found out that I had a DVT, or deep vein thrombosis, aka a bloodclot in my leg and lung. Both lungs apparently....This news, along with the high output ostomy (which lead to electrolyte imbalances, dehydration and further depressed mood), thinking about my looming legal matters, and my financial future, I hit my breaking point.
I felt like there was no hope. I felt like I had hit my limit when it came to strength, adversity, fight and will.
This is a difficult thing to even talk about, let alone admit and think about. Another thing that I have thought about everyday since, and one that continues to haunt me.
On August 4th, I tried to kill myself. I took some of the pills that I had in the house, hoping that I would fall asleep and never wake up. As I said, I had enough...I did not feel like I had a future, and could no longer handle my present, or deal with my past. I thought about hurting myself for a couple of days straight, over and over, and I wrote a note and tried to end it all. The physical...I had a body that I could not manage....a bag that I was a slave to...the mental, I hit my mental breaking point...legally, terrified about my future and could not see the bigger picture..there was no picture...not one that I figured I could be in any longer.
Writing this now, I will admit that I have thought about it since, and sometimes the feelings get pretty strong. I am still unsure of how my future will go, but I do want to keep trying and keep moving forward. This is where I need some financial help to get me through the next while as I get my body and my mind back on track.
Admittedly, being in the hospital from August 5th until today, has been very very hard on the head. Why have I been in hospital this long?
I was brought into the psych unit for a few days, at which time, after repeatedly telling them that I was running a high output ileostomy and needed medical help, I was transferred to a medical unit. The past two months, the medical team did their best and have tried every medicine combination that they could think of to slow down my output. My output is still very high and today is 2.7 litres and will go over 3 litres in the next couple hours. Having such a high output, they agreed that the ostomy is medically unmanageable. The consulted surgery 5 weeks ago, and I am awaiting reversal surgery. The anticipated reversal date is Oct 16th...that is three days away. This is a victory, and anyone who is reading this would think that it is the big break that I needed, and everything will work out fine.
Well, dear reader, this is where I am at today. I am still dealing with depression. I am still dealing with anxiety. I am still very concerned about my future. I had planned on working for my landlord mid July and have not been able to do so. This work was going to subsidize my living arrangements, and I fear that when I get out of hospital, hopefully in the next 10 days or so, that I will not be able to work....and will lose my home....I cannot expect my landlord, who has been supportive up until this point to let me live there without working and without paying him rent. This stress is overwhelming and that is why I am asking for help.
I do not know how long it will take me to recover physically, and mentally, and I also do not know how long it will take me to find work following such recoveries. There are many unknowns in life, everyone's life....and I describe my year not to garner sympathy, but to share my experience; it might help someone else who is struggling...
I describe my year to let you know that your donation will be appreciated and used to help me get back on my feet. It will allow me to stay in my home, an apartment that I've lived in for the past 5 years---it would allow me to recover and to have my bills paid for, food in my fridge and any medicine that I need. This has been a journey that went mostly in the left direction instead of the right one. I need your help. Even if you think it is a small donation, it is a big one for me.
Even if you do not want to, or are unable to donate, I thank you for taking the time to read what I have went through. I am grateful for my family, and my friends....
Organizer
Al Patrick
Organizer
Halifax, NS