Hello all,
I'm a newbie here, hoping to find some support and, perhaps, some sanity (if that's even possible) as my mom and I look forward to a nearly inevitable Crohn's diagnosis (one more surgical consultation to go, to rule out colorectal cancer that the doctors here told me they are about 99% certain she doesn't have).
Like most things in life, this diagnosis comes at about the worst possible moment and is happening to about the most unlucky candidate. We lost my father to MDS (a bone marrow failure disease, similar to Leukemia) back in late October of 2016. My mom had been doing great living on her own about 2.5 hours away from me, despite having a rather large non-cancerous brain tumor removed back in 2011. In may, she started having some stomach troubles (no big deal, we thought, she's had IBS for years), and ended up being admitted at the area hospital for intestinal inflammation and a partial small bowel obstruction. She spent about 4 days there, had the good ol' NG tube put in, and they ran a battery of tests. They suggested Crohn's at one point, but stopped talking about it and never really explained why (this was a small-town hospital that, in my opinion, offers horribly substandard care). Final diagnosis was that she had an infection of some kind, and that it had cleared her system, leaving only some inflammation behind.
She returned home and was really never "right" since then. She suffered more and more stomach problems over the next month - including bouncing back and forth between constipation and diarrhea, some vomiting, lots of nausea, and tons of stomach pain. Shortly after her 65th birthday in early July, I went to visit her and discovered she couldn't walk more than a few steps without doubling over in pain, was using multiple laxative suppositories a day, was barely eating, and was sleeping almost constantly. Obviously we had a serious issue. Lo and behold, I packed her a bag, got her in the car, and we traveled to Kansas City (where I live), where I immediately had an ambulance take her to the University of Kansas Hospital.
She spent over a week there, once again suffering from a partial small bowel obstruction. She underwent another horrible battery of tests, was without food or drink for nearly a week, had the NG tube once again (man she hates that thing), and was given parenteral nutrition through her IV. The doctors noted that she was extremely malnourished and low in almost every vitamin imaginable. The tests showed nothing conclusive, except that there was some kind of "laziness" in part of the small bowel, where it empties into the large intestine. Surgery was not deemed necessary and it was explained to me that once she visited one more colorectal specialist and nothing was found, they would diagnose Crohn's. They sent her home on July 25th, where she has been staying with me since, undergoing rigorous physical therapy to help her get strength back after her lengthy hospital stay.
As I stated, my mom had a brain tumor removed in early 2011. This has left her with some aphasia (a problem where you can't think of the right word), and occasional difficulties with numbers and following conversations (particularly if they include big words or are spoken by someone with an accent). When she is ill or tired, these problems are more severe. Right now, she is also wearing a diaper for bladder and bowel incontinence, is using a walker to get around, and is *nearly* finally able to get in and out of bed without assistance.
She was not given any dietary restrictions upon release from the hospital, but I have been working on making sure to keep her on a relatively easy to digest diet. She had been doing great with everything until Monday morning, when she woke up with a stomachache and stated that she simply "did not feel well." She had a deli turkey sandwich on white bread and some tortilla chips for dinner Sunday night, and I am assuming either the deli meat or the chips are the culprit. She had a very loose stool Monday morning and has not had one since. She did vomit once on Monday, but has not vomited since then. She has very active bowel sounds, has been belching and also passing gas with increased frequency. Her stomach is now only uncomfortable from time to time, with very little pain - she is, however, bloated. She is also extremely tired and has been nauseous. We have been managing the nausea with Nauzene (thanks to the post on this forum suggesting it) and eating very small amounts of mostly liquid foods throughout the day. I did not suspect an obstruction until I noticed her stomach was distended this evening when I was helping her get into bed. She used the restroom about an hour later and was passing a lot of gas, so we are hopeful for a bowel movement. If not, I will be calling the Home Healthcare Nurse and likely taking her back to the Hospital in the morning
The nearly two weeks she has been with me have been EXTREMELY trying for myself, my boyfriend, and my mom. She is a smoker, and I have provided her with information about the necessity of quitting ASAP - she appears to be taking it seriously. Her occasional confusion has increased since getting out of the hospital, which I know can be induced by a long hospital stay, but I have also read that Crohn's can cause short term memory loss or "brain fog." I am VERY concerned about her ability to manage Crohn's effectively, as she does not typically eat a healthy diet (she hates most fruits and vegetables) and may also have issues tracking medications, diets, and etc. I will be selling her house and she will be moving into Assisted Living as soon as she is a bit more mobile (I love her dearly, but she and I both promised YEARS ago she would not live with me, after my grandmother lived with us for 15 years and it nearly destroyed my parents' marriage).
She is in relatively good spirits right now, even despite her constipation/blockage/whatever is going on (if it were a blockage she would be getting worse like she has before, right? she feels better every day other than the distended stomach, nausea and constipation), but I am worried that she will suffer a poor quality of life because of her cognitive problems. I am also worried that she will not regain mobility, further deteriorating her quality of life. I have already noticed she seems a bit depressed from time to time, and has a tendency to chain smoke and just stare outside the window.
The doctors at KU Med put her on Budesonide and Azathioprine, and I have been trying to ensure she takes them even when she is not feeling well, in the hopes that it will ease some of her symptoms. She also takes Pantoprazole for Heartburn and Depakote to ward off any seizures from her brain surgery. I have also put together a binder that will house her food diary, some simplified explanations of Crohn's, its symptoms, treatments, and how to manage, as well as information about diet (including a list of NOPE foods that includes deli meat and tortilla chips). For myself, I have put together a binder of information from about every major Crohn's foundation I can find worldwide. The more I read about Crohn's, the more I desperately wish she had been diagnosed with this years ago, so she could have learned how to manage it before her additional health problems.
This has been an absolute novel, and for that, I apologize. I think it's been a bit therapeutic to get this off my chest, as the last few months have been rough, to say the very least.
I guess I would be interested in hearing thoughts from anyone willing to share. How hard is Crohn's to manage, particularly someone with some cognitive and mobility issues? Is it significantly more difficult in someone older? Are there things I can do to help her beyond what I am doing?
I am also possibly looking for someone from the Kansas City area who might be willing to meet with us to discuss the disease. My mom is very confused about what to expect, what will happen, etc. I have tried to explain and share my reading material, but I feel like it might be beneficial to have her speak with someone who actually has Crohn's. I know she has to be scared, and I'm not much help because I only have research to go off. Ideally, we will schedule her visit with the last specialist sometime next week (I need to make sure she is mobile enough to get out of the house a little more safely) and then we will be looking towards an official diagnosis, I guess.
Any suggestions, thoughts, information, stories or ANYTHING you'd like to send my way would be great. I've been doing nothing but reading about Crohn's for the last four days, and I'm hoping for a little reassurance that this isn't going to be the absolute worst thing ever, and make for a miserable rest of her life.
If you made it this far, thanks for reading. Hope to get to know you all soon!
dulouzz (Arminda) :sign0085:
I'm a newbie here, hoping to find some support and, perhaps, some sanity (if that's even possible) as my mom and I look forward to a nearly inevitable Crohn's diagnosis (one more surgical consultation to go, to rule out colorectal cancer that the doctors here told me they are about 99% certain she doesn't have).
Like most things in life, this diagnosis comes at about the worst possible moment and is happening to about the most unlucky candidate. We lost my father to MDS (a bone marrow failure disease, similar to Leukemia) back in late October of 2016. My mom had been doing great living on her own about 2.5 hours away from me, despite having a rather large non-cancerous brain tumor removed back in 2011. In may, she started having some stomach troubles (no big deal, we thought, she's had IBS for years), and ended up being admitted at the area hospital for intestinal inflammation and a partial small bowel obstruction. She spent about 4 days there, had the good ol' NG tube put in, and they ran a battery of tests. They suggested Crohn's at one point, but stopped talking about it and never really explained why (this was a small-town hospital that, in my opinion, offers horribly substandard care). Final diagnosis was that she had an infection of some kind, and that it had cleared her system, leaving only some inflammation behind.
She returned home and was really never "right" since then. She suffered more and more stomach problems over the next month - including bouncing back and forth between constipation and diarrhea, some vomiting, lots of nausea, and tons of stomach pain. Shortly after her 65th birthday in early July, I went to visit her and discovered she couldn't walk more than a few steps without doubling over in pain, was using multiple laxative suppositories a day, was barely eating, and was sleeping almost constantly. Obviously we had a serious issue. Lo and behold, I packed her a bag, got her in the car, and we traveled to Kansas City (where I live), where I immediately had an ambulance take her to the University of Kansas Hospital.
She spent over a week there, once again suffering from a partial small bowel obstruction. She underwent another horrible battery of tests, was without food or drink for nearly a week, had the NG tube once again (man she hates that thing), and was given parenteral nutrition through her IV. The doctors noted that she was extremely malnourished and low in almost every vitamin imaginable. The tests showed nothing conclusive, except that there was some kind of "laziness" in part of the small bowel, where it empties into the large intestine. Surgery was not deemed necessary and it was explained to me that once she visited one more colorectal specialist and nothing was found, they would diagnose Crohn's. They sent her home on July 25th, where she has been staying with me since, undergoing rigorous physical therapy to help her get strength back after her lengthy hospital stay.
As I stated, my mom had a brain tumor removed in early 2011. This has left her with some aphasia (a problem where you can't think of the right word), and occasional difficulties with numbers and following conversations (particularly if they include big words or are spoken by someone with an accent). When she is ill or tired, these problems are more severe. Right now, she is also wearing a diaper for bladder and bowel incontinence, is using a walker to get around, and is *nearly* finally able to get in and out of bed without assistance.
She was not given any dietary restrictions upon release from the hospital, but I have been working on making sure to keep her on a relatively easy to digest diet. She had been doing great with everything until Monday morning, when she woke up with a stomachache and stated that she simply "did not feel well." She had a deli turkey sandwich on white bread and some tortilla chips for dinner Sunday night, and I am assuming either the deli meat or the chips are the culprit. She had a very loose stool Monday morning and has not had one since. She did vomit once on Monday, but has not vomited since then. She has very active bowel sounds, has been belching and also passing gas with increased frequency. Her stomach is now only uncomfortable from time to time, with very little pain - she is, however, bloated. She is also extremely tired and has been nauseous. We have been managing the nausea with Nauzene (thanks to the post on this forum suggesting it) and eating very small amounts of mostly liquid foods throughout the day. I did not suspect an obstruction until I noticed her stomach was distended this evening when I was helping her get into bed. She used the restroom about an hour later and was passing a lot of gas, so we are hopeful for a bowel movement. If not, I will be calling the Home Healthcare Nurse and likely taking her back to the Hospital in the morning
The nearly two weeks she has been with me have been EXTREMELY trying for myself, my boyfriend, and my mom. She is a smoker, and I have provided her with information about the necessity of quitting ASAP - she appears to be taking it seriously. Her occasional confusion has increased since getting out of the hospital, which I know can be induced by a long hospital stay, but I have also read that Crohn's can cause short term memory loss or "brain fog." I am VERY concerned about her ability to manage Crohn's effectively, as she does not typically eat a healthy diet (she hates most fruits and vegetables) and may also have issues tracking medications, diets, and etc. I will be selling her house and she will be moving into Assisted Living as soon as she is a bit more mobile (I love her dearly, but she and I both promised YEARS ago she would not live with me, after my grandmother lived with us for 15 years and it nearly destroyed my parents' marriage).
She is in relatively good spirits right now, even despite her constipation/blockage/whatever is going on (if it were a blockage she would be getting worse like she has before, right? she feels better every day other than the distended stomach, nausea and constipation), but I am worried that she will suffer a poor quality of life because of her cognitive problems. I am also worried that she will not regain mobility, further deteriorating her quality of life. I have already noticed she seems a bit depressed from time to time, and has a tendency to chain smoke and just stare outside the window.
The doctors at KU Med put her on Budesonide and Azathioprine, and I have been trying to ensure she takes them even when she is not feeling well, in the hopes that it will ease some of her symptoms. She also takes Pantoprazole for Heartburn and Depakote to ward off any seizures from her brain surgery. I have also put together a binder that will house her food diary, some simplified explanations of Crohn's, its symptoms, treatments, and how to manage, as well as information about diet (including a list of NOPE foods that includes deli meat and tortilla chips). For myself, I have put together a binder of information from about every major Crohn's foundation I can find worldwide. The more I read about Crohn's, the more I desperately wish she had been diagnosed with this years ago, so she could have learned how to manage it before her additional health problems.
This has been an absolute novel, and for that, I apologize. I think it's been a bit therapeutic to get this off my chest, as the last few months have been rough, to say the very least.
I guess I would be interested in hearing thoughts from anyone willing to share. How hard is Crohn's to manage, particularly someone with some cognitive and mobility issues? Is it significantly more difficult in someone older? Are there things I can do to help her beyond what I am doing?
I am also possibly looking for someone from the Kansas City area who might be willing to meet with us to discuss the disease. My mom is very confused about what to expect, what will happen, etc. I have tried to explain and share my reading material, but I feel like it might be beneficial to have her speak with someone who actually has Crohn's. I know she has to be scared, and I'm not much help because I only have research to go off. Ideally, we will schedule her visit with the last specialist sometime next week (I need to make sure she is mobile enough to get out of the house a little more safely) and then we will be looking towards an official diagnosis, I guess.
Any suggestions, thoughts, information, stories or ANYTHING you'd like to send my way would be great. I've been doing nothing but reading about Crohn's for the last four days, and I'm hoping for a little reassurance that this isn't going to be the absolute worst thing ever, and make for a miserable rest of her life.
If you made it this far, thanks for reading. Hope to get to know you all soon!
dulouzz (Arminda) :sign0085:
