New ostomate seeking support
Posted: 2021-09-28 12:07:29
Hello everyone,
I'm glad I found this forum, because I need to connect with people that are going through the same thing as me. I have a good support group that consists of my wife and daughter, as well as some dedicated nurses, and a behavioral health therapist that is helping me cope, but I need direct, first-hand experience.
About me and the events that led me to this forum (This will be lengthy, because I need to vent...):
I am a 44 year old man, living in southeast Alabama with my wife and teenage daughter. I retired from the U.S. Army in October of 2019 after 24 years and 28 days of active duty. I was first diagnosed with diverticulitis in my descending colon on November 25th, 2011, while stationed at Ft. Belvoir, VA. The initial diagnosis came after 2-3 days of pain in my abdomen and finally breaking out in hives. I was hospitalized for 4-5 days and treated with antibiotics. That was the first time the word "colostomy" was uttered to me by a doctor. Over the following 10 years, I had "flair ups" with my diverticulitis and infrequent levels. None ever hospitalized me, and I was able to catch the flair ups soon enough to treat with antibiotics. Then in 2018, while stationed in Afghanistan, I had a bad flair-up that actually landed me on quarters with medics checking up on me, because the pain was pretty bad. I recovered, finished the deployment, and then went home to retire. Had no issues with diverticulitis again until March of this year, when I developed a painful abscess on my colon which almost lead to a perforation, but we caught it in time to treat with antibiotics over a three day hospital stay. It was during this hospitalization, that a younger and very candid attending surgeon broached the topic with me of having an elective surgery to remove the 6-8 inches of diseased colon that has plagued me all these years. He noted that, aside from the diverticulitis, I am an otherwise very healthy man with no other health concerns. At the time, I took no medication, and had no other health concerns. I've always been a very slim man, but I've otherwise always been very healthy. He laid out the benefits of correcting the condition, which only appeared to be getting progressively worse, and noted that recovery would be much simpler (without an ostomy!) if performed on my terms, rather than my sick colon's terms...
He could only perform open surgery at our small, back-woods hospital, so that wasn't an option for me, so I began the search to find a surgeon that I could trust to do this procedure laparoscopically. After several weeks of asking around and conducting my own research on local surgeons in the SE Alabama region, I finally found one I liked, had a great consultation with him, and we set a target date of mid-December to do the procedure, so I could mostly heal over the holidays and minimize disruptions at work. That was back in June.
On September 5th, just after eating breakfast, I was stricken by an intense, piercing pain in my abdomen. Strangely, it wasn't in the area normally associated with my diverticulitis. I thought it would pass or that maybe I had a large bowel movement underway (possibly from the larger and late dinner we had the night before?), but as the morning dragged on, the pain just increased to the point that, by noon, I was doubled over in pain. The drive to the emergency room ER was excruciating. Upon arrival (same hospital where I was treated for the abscess in March) I was eventually (nearly 90 minutes after check in) taken back to a treatment room, where I was given morphine for pain, and then given a CT scan. I never saw a doctor, but the attending nurse reviewed the CT scan results and ruled out a ruptured appendix. Me and my wife asked no less than four times if I had a perforated intestine, to which she said no.
I was discharged and told to schedule a visit with a GI specialist to rule out the possibility of IBS or ciliac disease...no pain meds given and only a mild anti-cramp medication given...and they wanted me to try to give an at-home stool sample if possible, to rule out giardia...
The following day (Labor Day), I woke with discomfort again, which soon became blinding pain when I attempted to have a morning bowel movement. The movement occurred, but soon thereafter, the pain took me to my knees. My wife started to panic and insisted that we go to a better hospital in a nearby, larger city. The 45 minute drive going there was on a major highway, but was so painful...every bump and pothole sent waves of pain through my abdomen.
Upon arrival, I was seen much sooner, given an IV, then an hour later, another CT scan. About 20 minutes later, a young doctor poked into my treatment room where me and my wife soon learned that, I DID have a sizeable perforation in my colon and that I would need surgery immediately.
I panicked. This was a nightmare scenario that I had tried to avoid for 10 years, coming to pass. There was nothing I could do. I begged the surgeon and his team to TRY to avoid the need of a stoma, but of course when I awoke from surgery a few hours later, there it was...a belly with more holes in it than a North Korean submarine and a big old bag stuck to me, with a portion of my guts sticking out into it...(to be clear, I have a temporary colostomy near where the transverse colon becomes the descending colon), which will most likely be reversed in December
My week of recovery was filled with anxiety and got to the point that i demanded to speak with a hospital psychiatrist. I also has extensive pain from urination that required a visit from a urologist. Since surgery, I've also had to deal with a loss of some functionality and sensation in my right arm, that resulted from improper placement of my arm and improper use of restraints and blocks during my surgery.
So now, I find myself at home, going on my third week of recovery. I'm generally pain free and am only taking some prostate medications that are supposed to ease the on-going discomfort I experience when urinating, but am having very real concerns about my future digestive health. My surgery staples will be removed on October 4th, and I really look forward to having those removed. My stoma is doing ok (so far no severe skin issues,no infections, etc.), although it has been a tedious affair for me to get comfortable with it. I change mine every 3-4 days, but that varies, because my output/waste varies in consistency from the consistency of a thick cake batter or paste, to pure liquid...). Despite not having any real dietary restrictions, I have given up all red meat and alcohol, and no subsist on a diet that strives to avoid lots of meat and gassy foods. Despite my efforts to eat as healthy as possible, with plenty of fiber, my guts still feel terrible inside. I feel like things are shifting and struggling inside of me. I can feel my intestines moving waste and it is an unpleasant feeling. I often feel gassy and nauseous and over the preceding four days, experienced some fairly acute pressure right in the middle of my abdomen, but sort of near my stoma, along with very liquid waste.
I don't really enjoy eating any longer, which is a massive departure for me, because I've always been the skinny guy that can eat anything and everything, and never gain a pound. After my initial diagnosis, I did commit to a healthier diet, which included limiting large quantities of meat and eliminating fast food and sodas from my diet entirely). But now, I NEED to gain weight (I'm 6'2" tall and currently weigh 138-140 pounds...I lost 15 pounds since surgery), I can't. Nothing feels right inside my guts and I am terrified that it never will. I've read several posts within this chat forum and most of them are all negative...people dealing with unpredictable bowel habits following their take-down/reversal...people that can't enjoy foods that they used to love...development of food allergies and on-going pain from scar tissue and organ inflammation...
It's all very depressing for me and really weighs heavy on my mind right now. Granted, I acknowledge that my situation could be worse. This should still be temporary for me. My colostomy isn't as debilitating as others. I have friends and family for support. I get it. And yet I don't...fear of the unknown really scares me. I want to be able to enjoy food again and have a normal bowel movement. I want to feel good within my own body and be able to feel confident enough to enjoy sex with my wife again....to not feel like my innermost organs are exposed and vulnerable...I hate this. I hate that this happened right after I committed to finally having the surgery. A lot of joy has been stolen from my life because of this and I haven't really been able to move on past the shock of needing this surgery and change in lifestyle.
Has anyone here had a reversal and then gone on to be happy with their body again? Is there a possibility that I can go back to the way things were, plus a few extra scars? Or is a lifetime of wondering and second-guessing and adapting the norm for us temporary ostomates? I've always held to the belief that once you are opened up and a surgeon starts moving things around and chopping up organs (especially digestive organs), that a person can never be whole again and that life takes a significant departure from the norm at that point. Is this true?
I know this all sounds like the uninformed ramblings of someone who is catastrophizing a fairly benign situation, but I feel like so much control has been taken from me, that I may never recovery it again. I just need to hear from some people that have recovered and generally returned to a normal life. I need to hear something positive for a change, because despite numerous combat deployments and separation from my family, this is hands-down the most difficult challenge of my lifetime. This surgery and the aftermath has shaken my confidence and hope and has been a huge stressor on my little family. I hate feeling like this and living in this low state of mind, because that's not who I am. I'm just having a very difficult time trying to adjust to this new (temporary lifestyle) and am afraid of what other challenges the reversal may pose...
Any feedback or advice is welcomed. Thanks for your time and consideration. Likewise, if anyone here experienced painful urination for several weeks after your surgery or had nerve damage in the arm or hand following the surgery, please contact me. I'm dealing with those too.
"Dave"
I'm glad I found this forum, because I need to connect with people that are going through the same thing as me. I have a good support group that consists of my wife and daughter, as well as some dedicated nurses, and a behavioral health therapist that is helping me cope, but I need direct, first-hand experience.
About me and the events that led me to this forum (This will be lengthy, because I need to vent...):
I am a 44 year old man, living in southeast Alabama with my wife and teenage daughter. I retired from the U.S. Army in October of 2019 after 24 years and 28 days of active duty. I was first diagnosed with diverticulitis in my descending colon on November 25th, 2011, while stationed at Ft. Belvoir, VA. The initial diagnosis came after 2-3 days of pain in my abdomen and finally breaking out in hives. I was hospitalized for 4-5 days and treated with antibiotics. That was the first time the word "colostomy" was uttered to me by a doctor. Over the following 10 years, I had "flair ups" with my diverticulitis and infrequent levels. None ever hospitalized me, and I was able to catch the flair ups soon enough to treat with antibiotics. Then in 2018, while stationed in Afghanistan, I had a bad flair-up that actually landed me on quarters with medics checking up on me, because the pain was pretty bad. I recovered, finished the deployment, and then went home to retire. Had no issues with diverticulitis again until March of this year, when I developed a painful abscess on my colon which almost lead to a perforation, but we caught it in time to treat with antibiotics over a three day hospital stay. It was during this hospitalization, that a younger and very candid attending surgeon broached the topic with me of having an elective surgery to remove the 6-8 inches of diseased colon that has plagued me all these years. He noted that, aside from the diverticulitis, I am an otherwise very healthy man with no other health concerns. At the time, I took no medication, and had no other health concerns. I've always been a very slim man, but I've otherwise always been very healthy. He laid out the benefits of correcting the condition, which only appeared to be getting progressively worse, and noted that recovery would be much simpler (without an ostomy!) if performed on my terms, rather than my sick colon's terms...
He could only perform open surgery at our small, back-woods hospital, so that wasn't an option for me, so I began the search to find a surgeon that I could trust to do this procedure laparoscopically. After several weeks of asking around and conducting my own research on local surgeons in the SE Alabama region, I finally found one I liked, had a great consultation with him, and we set a target date of mid-December to do the procedure, so I could mostly heal over the holidays and minimize disruptions at work. That was back in June.
On September 5th, just after eating breakfast, I was stricken by an intense, piercing pain in my abdomen. Strangely, it wasn't in the area normally associated with my diverticulitis. I thought it would pass or that maybe I had a large bowel movement underway (possibly from the larger and late dinner we had the night before?), but as the morning dragged on, the pain just increased to the point that, by noon, I was doubled over in pain. The drive to the emergency room ER was excruciating. Upon arrival (same hospital where I was treated for the abscess in March) I was eventually (nearly 90 minutes after check in) taken back to a treatment room, where I was given morphine for pain, and then given a CT scan. I never saw a doctor, but the attending nurse reviewed the CT scan results and ruled out a ruptured appendix. Me and my wife asked no less than four times if I had a perforated intestine, to which she said no.
I was discharged and told to schedule a visit with a GI specialist to rule out the possibility of IBS or ciliac disease...no pain meds given and only a mild anti-cramp medication given...and they wanted me to try to give an at-home stool sample if possible, to rule out giardia...
The following day (Labor Day), I woke with discomfort again, which soon became blinding pain when I attempted to have a morning bowel movement. The movement occurred, but soon thereafter, the pain took me to my knees. My wife started to panic and insisted that we go to a better hospital in a nearby, larger city. The 45 minute drive going there was on a major highway, but was so painful...every bump and pothole sent waves of pain through my abdomen.
Upon arrival, I was seen much sooner, given an IV, then an hour later, another CT scan. About 20 minutes later, a young doctor poked into my treatment room where me and my wife soon learned that, I DID have a sizeable perforation in my colon and that I would need surgery immediately.
I panicked. This was a nightmare scenario that I had tried to avoid for 10 years, coming to pass. There was nothing I could do. I begged the surgeon and his team to TRY to avoid the need of a stoma, but of course when I awoke from surgery a few hours later, there it was...a belly with more holes in it than a North Korean submarine and a big old bag stuck to me, with a portion of my guts sticking out into it...(to be clear, I have a temporary colostomy near where the transverse colon becomes the descending colon), which will most likely be reversed in December
My week of recovery was filled with anxiety and got to the point that i demanded to speak with a hospital psychiatrist. I also has extensive pain from urination that required a visit from a urologist. Since surgery, I've also had to deal with a loss of some functionality and sensation in my right arm, that resulted from improper placement of my arm and improper use of restraints and blocks during my surgery.
So now, I find myself at home, going on my third week of recovery. I'm generally pain free and am only taking some prostate medications that are supposed to ease the on-going discomfort I experience when urinating, but am having very real concerns about my future digestive health. My surgery staples will be removed on October 4th, and I really look forward to having those removed. My stoma is doing ok (so far no severe skin issues,no infections, etc.), although it has been a tedious affair for me to get comfortable with it. I change mine every 3-4 days, but that varies, because my output/waste varies in consistency from the consistency of a thick cake batter or paste, to pure liquid...). Despite not having any real dietary restrictions, I have given up all red meat and alcohol, and no subsist on a diet that strives to avoid lots of meat and gassy foods. Despite my efforts to eat as healthy as possible, with plenty of fiber, my guts still feel terrible inside. I feel like things are shifting and struggling inside of me. I can feel my intestines moving waste and it is an unpleasant feeling. I often feel gassy and nauseous and over the preceding four days, experienced some fairly acute pressure right in the middle of my abdomen, but sort of near my stoma, along with very liquid waste.
I don't really enjoy eating any longer, which is a massive departure for me, because I've always been the skinny guy that can eat anything and everything, and never gain a pound. After my initial diagnosis, I did commit to a healthier diet, which included limiting large quantities of meat and eliminating fast food and sodas from my diet entirely). But now, I NEED to gain weight (I'm 6'2" tall and currently weigh 138-140 pounds...I lost 15 pounds since surgery), I can't. Nothing feels right inside my guts and I am terrified that it never will. I've read several posts within this chat forum and most of them are all negative...people dealing with unpredictable bowel habits following their take-down/reversal...people that can't enjoy foods that they used to love...development of food allergies and on-going pain from scar tissue and organ inflammation...
It's all very depressing for me and really weighs heavy on my mind right now. Granted, I acknowledge that my situation could be worse. This should still be temporary for me. My colostomy isn't as debilitating as others. I have friends and family for support. I get it. And yet I don't...fear of the unknown really scares me. I want to be able to enjoy food again and have a normal bowel movement. I want to feel good within my own body and be able to feel confident enough to enjoy sex with my wife again....to not feel like my innermost organs are exposed and vulnerable...I hate this. I hate that this happened right after I committed to finally having the surgery. A lot of joy has been stolen from my life because of this and I haven't really been able to move on past the shock of needing this surgery and change in lifestyle.
Has anyone here had a reversal and then gone on to be happy with their body again? Is there a possibility that I can go back to the way things were, plus a few extra scars? Or is a lifetime of wondering and second-guessing and adapting the norm for us temporary ostomates? I've always held to the belief that once you are opened up and a surgeon starts moving things around and chopping up organs (especially digestive organs), that a person can never be whole again and that life takes a significant departure from the norm at that point. Is this true?
I know this all sounds like the uninformed ramblings of someone who is catastrophizing a fairly benign situation, but I feel like so much control has been taken from me, that I may never recovery it again. I just need to hear from some people that have recovered and generally returned to a normal life. I need to hear something positive for a change, because despite numerous combat deployments and separation from my family, this is hands-down the most difficult challenge of my lifetime. This surgery and the aftermath has shaken my confidence and hope and has been a huge stressor on my little family. I hate feeling like this and living in this low state of mind, because that's not who I am. I'm just having a very difficult time trying to adjust to this new (temporary lifestyle) and am afraid of what other challenges the reversal may pose...
Any feedback or advice is welcomed. Thanks for your time and consideration. Likewise, if anyone here experienced painful urination for several weeks after your surgery or had nerve damage in the arm or hand following the surgery, please contact me. I'm dealing with those too.
"Dave"