I'm a childhood/returned in adulthood asthma sufferer, as well as a non-Hodgkins lymphoma childhood cancer survivor and Crohn's Disease sufferer in my adult years. Originally diagnosed in 2008 (28 years old), it went into remission and returned two years later. I went on Humira back in early 2010 and by the end of the 3rd quarter, was completely removed from it. This is after trying Entocort to no avail and being on Prednisone for a lengthy period of time. I had illum surgery the following year to remove six inches of small bowel colon through my navel, which finally brought an end to my severe stomach cramping/soreness. While I was grateful for the pain relief, my REAL nightmare was just starting. First a fistula developed and finally healed about a year later. During that time period till this very day, I'm constantly stuck feeling like I need to defecate, even though sometimes there's nothing to push out, which leaves me afraid to leave the bathroom because I can't tell if I actually need to go or not. My last Colonoscopy was in 2015 to which I was told, "we couldn't find anything", left me feeling like I was going crazy. This on top of life-long straining problems to start with, eventually caused me extreme anxiety due to being stuck in the bathroom, dealing with constant calls in late to work and dealing with coworkers judging me and having to go an unreasonable extra mile to stand out in fear of losing a job. I used to be mentally strong enough to power through almost any problem I've ever faced in the past, however now I'm unemployed after 20 years of retail and staying with friends who support me in exchange for keeping up the house, which I'm grateful for, however I want my life back. Despite my scars, I've tried lying to myself about having Crohns in the first place, only to get frustrated and fall back into depression after another 5-10 hour session in the bathroom. With no job and no insurance, I feel like a deadbeat looking for help which is an insult considering how hard I worked, only to lose everything to this disease. I'm I the only person ever to be diagnosed with Crohn's and have these particular bathroom issues after surgery? (Thank you in advance for any advice and my apologies for the long winded introduction)
I'm not sure where to start.
- Thread starter QuanB
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Jun 23, 2020
- Messages
- 99
It's a cruel irony how crohns presents differently for everybody
... even the same person can have wild swings with no discernable reason
Sounds like you're having a rough go of it
... also sounds like you're doing your best
... i;ve been there, a half a step from homeless and losing hope
... sucks ...
One thing stands out in your post
...you're still in the game, and you're doing what you can
... that takes courage!
i;ve been there, and the hardest part was asking for help
it started with calling a crisis line, and finding there were some resources available to help me get squared away
probably my lowest point, but it was the start of a journey to a better place
a journey of a thousand miles begins with that first step
See if you can connect with someone at your g.i. clinic to do some labs / work ups,
2015 was a long time ago, you may have had a few things change/progress since then and a fresh colonoscopy may be prudent
Feel free to ask any questions you may have
There's a wealth of knowledge on this board!
My favorite place here is the diet, fitness and supplements area
so much good stuff there!
Good luck, and hang in there!
... even the same person can have wild swings with no discernable reason
Sounds like you're having a rough go of it
... also sounds like you're doing your best
... i;ve been there, a half a step from homeless and losing hope
... sucks ...
One thing stands out in your post
...you're still in the game, and you're doing what you can
... that takes courage!
i;ve been there, and the hardest part was asking for help
it started with calling a crisis line, and finding there were some resources available to help me get squared away
probably my lowest point, but it was the start of a journey to a better place
a journey of a thousand miles begins with that first step
See if you can connect with someone at your g.i. clinic to do some labs / work ups,
2015 was a long time ago, you may have had a few things change/progress since then and a fresh colonoscopy may be prudent
Feel free to ask any questions you may have
There's a wealth of knowledge on this board!
My favorite place here is the diet, fitness and supplements area
so much good stuff there!
Good luck, and hang in there!
Thank you for your kind words. It's certainly makes me feel a bit better that I've found a place where people understand what I've gone through/going through. My only goal now is to get back up on my feet so I can get under some insurance and maybe try some of these newer medications that have come out in the last decade, trying to prevent any new issues that could have been avoided had I been able to seek medical attention sooner.
- Joined
- Jun 23, 2020
- Messages
- 99
Hey, thanks for checking back in! 
yeah, the phantom poop thing, boy howdy do I know what you mean!
nothing sucks more than that!
I wish i had some words of wisdom for you there.
I adjusted my diet (considerably!) and added a few supplements (primarily turmeric) and things laid way down, but it still happenes ever now and then
Please check out the diet,fitness and supplements subforum, there's some really good stuff in there!
I'm so happy you have some good friends!
It makes all the difference in the world to have a few folks around you that you can lean on every now and then!
I also get the feeling like feeling like you're imposing on folks
.... but sometimes you just have to
... it is what it is ...
Sounds like you're making the best of it, and just want to do better and don;t know how
... boy howdy, do i get that, too!
I wish I had better advice for you ...
Lots of us here live with this exact feeling everyday.
some of us are lucky and have good docs, some of us also have no docs and are starting over
... lots of folks in different stages of treatment, with all kinds of different challenges ...
The one thing i have learned from this forum is you have to advocate for yourself
I have had periods in my life where i felt i had nothing, not even a friend
... you have friends, my friend ...
Lets see what we can do, starting with getting you in to see a doc
I'm sorry you don;t have insurance coverage right now
sounds like you paid into the system for years, now it's time to make it work for you!
Is there a local resource exchange where you live?
Maybe a program at your hospital?
I wonder if a call into them might help you find an advocate that can help you fast track some paperwork to get you temporary coverage?
... it's the holidays, so thing may be a lil busy, but at least get someone "officially" involved and working on things with you
I'll say it again (because i had to hear it over and over before i did what i needed to do)
sounds like you paid into the system for years, now it's time to make it work for you!
Lets get you into a good doc and get you on the path back to wellness
... we'll sort the details out later
yeah, the phantom poop thing, boy howdy do I know what you mean!
nothing sucks more than that!
I wish i had some words of wisdom for you there.
I adjusted my diet (considerably!) and added a few supplements (primarily turmeric) and things laid way down, but it still happenes ever now and then
Please check out the diet,fitness and supplements subforum, there's some really good stuff in there!
I'm so happy you have some good friends!
It makes all the difference in the world to have a few folks around you that you can lean on every now and then!
I also get the feeling like feeling like you're imposing on folks
.... but sometimes you just have to
... it is what it is ...
Sounds like you're making the best of it, and just want to do better and don;t know how
... boy howdy, do i get that, too!
I wish I had better advice for you ...
Lots of us here live with this exact feeling everyday.
some of us are lucky and have good docs, some of us also have no docs and are starting over
... lots of folks in different stages of treatment, with all kinds of different challenges ...
The one thing i have learned from this forum is you have to advocate for yourself
I have had periods in my life where i felt i had nothing, not even a friend
... you have friends, my friend ...
Lets see what we can do, starting with getting you in to see a doc
I'm sorry you don;t have insurance coverage right now
sounds like you paid into the system for years, now it's time to make it work for you!
Is there a local resource exchange where you live?
Maybe a program at your hospital?
I wonder if a call into them might help you find an advocate that can help you fast track some paperwork to get you temporary coverage?
... it's the holidays, so thing may be a lil busy, but at least get someone "officially" involved and working on things with you
I'll say it again (because i had to hear it over and over before i did what i needed to do)
sounds like you paid into the system for years, now it's time to make it work for you!
Lets get you into a good doc and get you on the path back to wellness
... we'll sort the details out later
I sure hear you QuanB. Crohn’s sucks as we all know. The feeling of having to go to the bathroom and nothing is there is very real. I too had surgery March 2021 and thought yes remission. I was In remission for 1 month since then everything has been up and down. More down than up. But I find this forum to be the best place. Everyone here is or has a family member in one stage of the disease or other. So no matter where you are someone has been there and has support And very possibly answers to help.
Thank you both T-bone and Carabop for the replies. I also apologize for the late reply, as things have been busy here lately and I'm fighting through a small onset of depression. The one thing that aggravates me the most, is having to explain to love ones why I can't go out for the thousandth time. After so many years of it, I wish I were lying or making up excuses because there's no amount of ether of those worth putting up with all the headache it causes.
Within the next week or so, I'm finally going to try for disability. The only reason why I haven't in the past, was due to my oncologist telling me that I'd have to be even worse off than I am for the social security administration to even look in my direction, Crohn's Disease wise. It scares me off and makes me feel like I'm not going to be taken seriously because instead of having a limb missing or a sickness people can see physically, my problem is being stuck on the toilet.
I'd do 18 more months of 1993's chemotherapy all over again if you told me I'd be cured when it's all said and done.
Within the next week or so, I'm finally going to try for disability. The only reason why I haven't in the past, was due to my oncologist telling me that I'd have to be even worse off than I am for the social security administration to even look in my direction, Crohn's Disease wise. It scares me off and makes me feel like I'm not going to be taken seriously because instead of having a limb missing or a sickness people can see physically, my problem is being stuck on the toilet.
I'd do 18 more months of 1993's chemotherapy all over again if you told me I'd be cured when it's all said and done.
I have lost many so called friends over the years because of crohn’s. They would want to go do something and I had to decline most of the time because of toilet issues. After sometime they would eventually stop asking me to join them. As for family my husband and daughter are very understanding and supportive. The rest of the family is ok but I have one family member that makes comments all the time. Like “are you in the bathroom again” or “you sure stink when you go to the bathroom.” It used to bother me but now I just let it roll off my back and let nature take its course. They will get their due one day.
A lot of people have told me to file for disability but I haven’t. I am at the age now where I can get social security so I will go that route when the time comes.
Try not let the depression get the best of you. Also try do something you enjoy and forget about everything else. Life is to short to worry about what other people are thinking or doing. I have had 3 times where I have nearly died and it will sure change your outlook on life.
I wish you the best QuanB. Just keep pushing on and live for yourself. Do the best you can for you.
A lot of people have told me to file for disability but I haven’t. I am at the age now where I can get social security so I will go that route when the time comes.
Try not let the depression get the best of you. Also try do something you enjoy and forget about everything else. Life is to short to worry about what other people are thinking or doing. I have had 3 times where I have nearly died and it will sure change your outlook on life.
I wish you the best QuanB. Just keep pushing on and live for yourself. Do the best you can for you.
I really appreciate your kind words Carabop and I'm gonna do my best to check in on this forum and even try to help out where I can, if the situation arises where I can, depending on if I've had any experiences dealing with the topic. It's nice to know that I hadn't gone crazy all of these years and that other people have dealt with similar issues.
