Cured? No. Disabled? I think so.

I came across a reply earlier and someone said they believe the J-Pouch surgery had “cured” them from UC. Does anyone feel cured? For me personally I strongly feel that we are not completely cured HOWEVER we are no longer at risk of having Toxic Megacolon, severe blood loss, etc. Also, for those of us with absolutely no colon or rectum, we have so much less room to store waste and gas! Those of you that got to keep even a small piece of your colon or rectum are very fortunate & probably have much thicker stools & less frequency.  My doctors, family, and friends think that I have been cured by this surgery. I will tell you right now that in no way shape or form am I cured, however I would rather have the occasional bout of Pouchitis, severe gas daily, and several bowel movements than lose liters of blood each day. Does anyone else feel like they are disabled? & if anyone has been proven to be disabled and on SSDI or SSI PLEASE reply or send me a direct message! The SSA is telling me I am not disabled because “I can be a delivery driver”.... I cannot even drive a car with my UC! The last time I tried to drive I nearly crashed because my stomach pains nearly cause me to black out. I am 26, do they expect me to deliver pizzas my whole life? I cannot image being a delivery driver and stopping 15 times to use the restroom during a shift. I wanted to post this in Rants/Raves however it is pretty general. If this has not affected your work life you are very fortunate and that is great for you! I simply cannot work, as no job will allow me to take the restroom breaks I need, sanitary issues, pains, etc.  I really need help from others who are disabled. 

Original Post

Yeah, not cured.  Somehow, I got it in my mind that I might try to substitute teach part time-no way-not with my bathroom schedule!  However, in my particular field, I am able to work in a program where I do home visits, as long as I have access to a bathroom, especially in the afternoon.  I probably know where every Starbucks and Dunkin Donuts are along the way.  Just the other day, I mentioned to a co-worker how nice it would be to have a normal bathroom schedule again!  Most days, I handle it well, just get annoyed sometimes.  

CTB23 posted:

Yeah, not cured.  Somehow, I got it in my mind that I might try to substitute teach part time-no way-not with my bathroom schedule!  However, in my particular field, I am able to work in a program where I do home visits, as long as I have access to a bathroom, especially in the afternoon.  I probably know where every Starbucks and Dunkin Donuts are along the way.  Just the other day, I mentioned to a co-worker how nice it would be to have a normal bathroom schedule again!  Most days, I handle it well, just get annoyed sometimes.  

Haha all of the local Starbucks know me by name bc I use their bathrooms ALL THE TIME (: they don’t mind. Also Starbucks new policy says that anyone can occupy their space, use their bathrooms, etc.. without making a purchase. It was due to a lawsuit however it’s beneficial to know we have access to clean restrooms if your fortunate enough to live near a lot of Starbucks locations. Also, McDonald’s has some of the cleanest bathrooms around. 

Reading your posts with interest- had a jpouch in 1992 due to UC and then after 23 years kept getting adhesions and ops to clear them- ended up with end illeo in 2017

Been on disability for last 10 years as nobody would employ me due to bathroom breaks and finding a toilet while out was always a worry but then found this really helpful app on iPhone, may also be on Android 

In Australia its called Toilet App and shows all usable public toilets in the area you choose- I think it originated from the Ostomy Association 

Might be of use to you too if available in US or there could be a similar app

Heather

hever posted:

Reading your posts with interest- had a jpouch in 1992 due to UC and then after 23 years kept getting adhesions and ops to clear them- ended up with end illeo in 2017

Been on disability for last 10 years as nobody would employ me due to bathroom breaks and finding a toilet while out was always a worry but then found this really helpful app on iPhone, may also be on Android 

In Australia its called Toilet App and shows all usable public toilets in the area you choose- I think it originated from the Ostomy Association 

Might be of use to you too if available in US or there could be a similar app

Heather

Thank you! I will look into this! Please check your private messages as I sent you a few questions that I’m hoping you can answer. Thank you ! 

I maybe the exception to the rule but the removable of my bowel during 2005 as good as cured me of UC and I never consider myself disabled; even during the 9½ years with the ileostomy and all the more so since takedown during 2015.

 Within 18 months of my bowel being removed I was in the gym 3 times per week weightlifting and twice a week participating in Self defense training.

  With the illeostomy, I had to change the bag every couple of hours, take 2 or maybe 4 Imodium just prior to visiting the gym or even when going out; insert sachet into the Colostomy Bag to solidify its content, wear specialist boxers shorts to keep the bag tight and close against my abdomen, yet although all an inconvenience, I was in effect cure of my UC, thus no more flare ups or passing blood.

  Since J pouch Surgery and takedown, I no longer have the inconvenience of the Colostomy Bag, having to carry all the supplies and constantly be taking the Imodium; I still take the Imodium but not as religiously.

Therefore, based on my life with the ileostomy and the last 4 years with a J pouch, yeah, I'm see myself as cured and I don't regard myself as disabled, although when I had the ileostomy, I did use the disabled toilets.

 

I second that strange, I was in no position to work or workout before my surgery. Since takedown I've been gyming almost 6x a week and I've been working for a company which takes 8hrs a day.  The pay is also good so I woulnt say disabled ,far from it. Any amount of bms are better than those painfull ones with UC and with a jpouch it takes me hardly any time to clear up. All my co workers and my manager are well aware of my situation and are very helpful. I in return work very hard. I think its a matter of opinion. The surgery is on neither extremes you are not perfectly normal neither disabled. 

Most J-Pouchers aren’t disabled, though the extra bathroom trips can be an inconvenience. Some J-Pouchers (a small subset) are disabled; this can be from untreated (or inadequately treated) pouchitis or cuffitis, untreatable pouchitis or cuffitis, an unresolved mechanical problem (pouch prolapse, twisting, or other surgical failure), unmanageable fistulae, severe incontinence, or a few other odds and ends. Most J-Pouchers never visit these forums, but folks with significant problems are much more likely to visit than folks who are doing fine.

It’s best to assume that others are having their own very individual experiences of life with a J-pouch. If you are struggling then that story can be very helpful to others, but it’s best not to assume they are experiencing the same thing. If you are succeeding the same applies: whatever is working for you is worth sharing, but you really can’t know if it will work for anyone else.

UC is an autoimmune disease. You may get rid of a part it affects. But you still have the disease. That never goes away. And it shows it's ugly head in other forms 

Some consider what has been done a cure but the cure is individual.  I feel having my colon out definitely cured me of the problem of uc because I just flat out don't have it anymore. And comparing my life now to when I had uc I think it was "my" cure.  That's my view. As for it being a disability on its own. No way. No matter how many trips to the can (I counted 40 one day at work. 8 hours).  That was a bad day. As for an ileostomy being in the disability range. Nope. It's not. If it works and works well no Dr or surgeon will ever say you are disabled. At least mine wouldn't. I asked her just for the heck of it. She said no. 

Autoimmune disease is for life. We have to learn to live with it. The best we can. 

I've had the temporary ileo. The j pouch. (which was two years of hell) Did not work in my case. And now I have an end ileo. This is where I need to be. It's "my cure" . I don't feel disabled. I feel abled for the first time in decades.

R. 

strange posted:

I maybe the exception to the rule but the removable of my bowel during 2005 as good as cured me of UC and I never consider myself disabled; even during the 9½ years with the ileostomy and all the more so since takedown during 2015.

 Within 18 months of my bowel being removed I was in the gym 3 times per week weightlifting and twice a week participating in Self defense training.

  With the illeostomy, I had to change the bag every couple of hours, take 2 or maybe 4 Imodium just prior to visiting the gym or even when going out; insert sachet into the Colostomy Bag to solidify its content, wear specialist boxers shorts to keep the bag tight and close against my abdomen, yet although all an inconvenience, I was in effect cure of my UC, thus no more flare ups or passing blood.

  Since J pouch Surgery and takedown, I no longer have the inconvenience of the Colostomy Bag, having to carry all the supplies and constantly be taking the Imodium; I still take the Imodium but not as religiously.

Therefore, based on my life with the ileostomy and the last 4 years with a J pouch, yeah, I'm see myself as cured and I don't regard myself as disabled, although when I had the ileostomy, I did use the disabled toilets.

 

Do you have your rectum? 

Mysticobra posted:

UC is an autoimmune disease. You may get rid of a part it affects. But you still have the disease. That never goes away. And it shows it's ugly head in other forms 

Some consider what has been done a cure but the cure is individual.  I feel having my colon out definitely cured me of the problem of uc because I just flat out don't have it anymore. And comparing my life now to when I had uc I think it was "my" cure.  That's my view. As for it being a disability on its own. No way. No matter how many trips to the can (I counted 40 one day at work. 8 hours).  That was a bad day. As for an ileostomy being in the disability range. Nope. It's not. If it works and works well no Dr or surgeon will ever say you are disabled. At least mine wouldn't. I asked her just for the heck of it. She said no. 

Autoimmune disease is for life. We have to learn to live with it. The best we can. 

I've had the temporary ileo. The j pouch. (which was two years of hell) Did not work in my case. And now I have an end ileo. This is where I need to be. It's "my cure" . I don't feel disabled. I feel abled for the first time in decades.

R. 

So if I were to apply at McDonalds for example, and told them that I would have to take 40 restroom trips during my shift you really think they would hire me over the next guy? Wrong. You think they would keep me after the 90 day period even tho I spend half of my shift in the restroom? Also sanitary issues exist. I understand certain jobs may be possible, however in no way shape or form would I be able to perform tasks that most jobs require. Also, someone without UC can physically do more work, it’s just a fact. What it breaks down to is a factory job where you literally have to raise your hand to use the restroom. If I worked on an assembly line and had to take an urgent bathroom trip the entire assembly line would get backed up and shut down and I would be fired or Have my hours cut down. I’ve witnessed it first hand. I am very happy for those of you that are able to work! However I am not asking if I am disabled, I know I am however I am doing my best to work through it and asking for he opinions of others who are disabled. 

I have worked 26 years with a J Pouch and what has been diagnosed as Crohn’s Disease, as a trial attorney and litigator. I never missed work for an extended period except right after the colectomy. There have been times when I was nervous about being in Court and worried I would have to take awkward, unforeseen bathroom breaks during a trial or other all day Court event. It has never actually happened. I did warn a Judge one time there could be a problem when I was feeling a little more urgent than usual, but as soon as the event started adrenaline would kick in and it would not be noticed. It’s always been that way and I have no explanation for it, except being lucky.

26 years in private practice is a long time and with my parents aging and fragile and living in another State, I am looking to transition, at age 55, to working in house or for local, state or federal government. I love my current job but I have one eye on the future, now more than ever. As with all of you, having health insurance benefits is imperative for me. Remicade is $10,000 an infusion retail with no insurance. But with insurance and Remistart it’s very affordable.

i am the kind of person who needs to be productive. If I am not productive and active at work that’s when negative thoughts, mainly about the future, start creeping into my head. Being disabled and/or out of work is something that would be exceptionally difficult for me. I actually am planning on working in some capacity until I drop. I would be bored with an unproductive retirement. 

It does appear that this thread is becoming a little misconstrued.

    My experience since surgery, whether after the initial removal of my bowel during 2005 and then the forming of my J pouch during 2014 have been tremendous successes.

However, prior to my diagnosis of UC and the eventual removal of my bowel; I struggled during flare ups, although not severe enough to warrant Hospital admission, they would last for months.

  During my initial flare up which lead to my diagnosis, I worked a 12 hour night shift, all by myself, so I was able to rush to the toilet as often as needed. 

During my next flare up some 5 years later, I was running my own business and although I called the shots, it was difficult; I would take longer than normal to complete tasks and not realise I was slowing, plus the many interruptions to use the toilet didn't help either, packing away all my tools to find a toilet in a McDonald's or similar establishment, this alone could take 45 minutes to a hour; if employed, I would of been fired.

Eventually, I was admitted into hospital and although I recovered sufficiently to leave hospital, I was still very ill, yet I persevered but my business eventually failed and so did my relationship.

This flare up took 4 years to completely recover from and I had to revert to the lone 12 hour night shifts for employment and yeah, if my employer knew I was ill and would be using the toilet 8, 9 or 10 times during a shift, they would of probably have never employed me.

At the time, the option to remove my bowel was put forward, but there was no mention of reconnection or a J pouch, just Colostomy Bag; and at 27 years of age, that was the last thing I wanted.

Therefore, I persevered and I only sought employment where I would be working by myself, which meant a night shift and luckily, without any interaction with anyone else, thus I could vomit whenever I needed to and as often as I needed to and use the toilet as often as needed and without anyone around to notice or question.

Athough it was impossible to gain normal day shift employment within my preferred industry; foolishly, I still never considered myself as disabled.

I think it’s aall about perspective. In no way shape or form do I plan on letting my situation keep me from working one day however for now it is just not an option to work full time. I saw one reply saying that you continued your career in the legal field, that is great! However, I am going to asssume that you completed Law School before your complications got severe and if so you are fortunate. Why should we be forced to work “night” jobs? Why should we be forced to find jobs that have immediate bathroom access? Even with my ostomy bag I could not work, the last time I did heavy lifting with my ileostomy it led to a prolapsed stoma which caused an emergency surgery/revision. I don’t think I explained my situation well enough. I am going to end my input in this thread here and conclude that we are all different as individuals. What works for me, might not work for you and vice versa. Just because some of you have great success with your pouches, and are able to work does not mean that we all are. If you are able to work full time you should feel very lucky, I know people who are fully abled and choose not to work. I judge them hard. I did not open this thread to argue, I opened it to ask for advice from other disabled pouchers. Also some of you mentioned that you could not sit back and feel disabled, you can work part time and be disabled. In no way shape or form do I plan to sit around and let this disease conquer me however I refuse to be forced into an environment where I do not get treated equally as someone who is fully abled. I refuse to be put in a situation where I have to suffer tremendous amounts of pain to earn near minimum wage. Let me also state that my UC forced me to stop attending classes and I have not competed my degree YET. Best of luck to all of you, I was offended by some of the responses and also took in some valuable information.  Thank you all. 

POUCHBRO, it's not that anyone disagrees with you, nor do I believe anyone wished to offend you.

I guess it's how we feel due to the success of our surgery.

You asked whether we see the removal of the bowel as a cure; well for myself, it was and initially, I foolishly refused such surgery because I didn't want a colostomy bag.

However, 6 years later, I had no choice but have emergency surgery and an end ileostomy was created.

Once I'd come to terms with the ileostomy, I realised I'd actually got my life back; yeah it was an inconvenience changing the bags, carry supplies and I hated the bag hanging from my abdomen but it changed my life for the better; it was a new lease of life, which I could of been enjoying 6 years earlier, if I didn't have such a hang up over the thought of a Colostomy Bag.  

During my 9½ with the Colostomy Bag, other than the odd issue with supplies, the appliance and leakage, I never experienced any medical issues or complications; I lead, to an extent, a perfectly normal life.

Since my takedown, other than issues regarding fatigue, my life with a J pouch couldn't be better and it's for this, why I don't see myself as disabled.

My BMs, are on average, 3 to maybe 4 per day, never less than 2,  with several hours between BMs; even with the ileostomy, changing the bag every 2 to 3 hours was an inconvenience but easy to overcome, because I had to.

Those of us who have undergone successful bowel surgery are more likely proud of what's been acheived and how we've managed to overcome adversity; so much so, we want to shout it from the roof tops, not to belittle those less fortunate but to inspire those who are considering J pouch surgery.

strange posted:

POUCHBRO, it's not that anyone disagrees with you, nor do I believe anyone wished to offend you.

I guess it's how we feel due to the success of our surgery.

You asked whether we see the removal of the bowel as a cure; well for myself, it was and initially, I foolishly refused such surgery because I didn't want a colostomy bag.

However, 6 years later, I had no choice but have emergency surgery and an end ileostomy was created.

Once I'd come to terms with the ileostomy, I realised I'd actually got my life back; yeah it was an inconvenience changing the bags, carry supplies and I hated the bag hanging from my abdomen but it changed my life for the better; it was a new lease of life, which I could of been enjoying 6 years earlier, if I didn't have such a hang up over the thought of a Colostomy Bag.  

During my 9½ with the Colostomy Bag, other than the odd issue with supplies, the appliance and leakage, I never experienced any medical issues or complications; I lead, to an extent, a perfectly normal life.

Since my takedown, other than issues regarding fatigue, my life with a J pouch couldn't be better and it's for this, why I don't see myself as disabled.

My BMs, are on average, 3 to maybe 4 per day, never less than 2,  with several hours between BMs; even with the ileostomy, changing the bag every 2 to 3 hours was an inconvenience but easy to overcome, because I had to.

Those of us who have undergone success bowel surgery are more likely proud of what's been acheived and how we've managed to overcome adversity; so much so, we want to shout it from the roof tops, not to belittle those less fortunate but to inspire those who are considering J pouch surgery.

Well said. Thank you..

And I do apologize if I offended anyone. 

I don't handle the power of words well.  I get too brash at time. I apologize.

Richard  

Pouchbro posted:

IHowever, I am going to asssume that you completed Law School before your complications got severe and if so you are fortunate.

This would be a wildly inaccurate assumption. My 3 years of law school were my last 3 years before I had J Pouch surgery. I missed extensive time and numerous classes, and the bar exams were difficult for me to complete because of all the bathroom trips. I was on 60 mg Prednisone during 3 days of bar exams and wouldn’t have made it through the third day but for the Prednisone slightly ameliorating things. That was when I decided to have surgery. I realized a legal career wasn’t going to happen for me unless I had surgery. There was then a final scope showing dysplasia in my colon and a wait for a period of months to get the surgery scheduled in New York City. My surgeon reported my colon was dissolving in his hands when he removed it and that toxic megacolon was in my immediate future if I didn’t have surgery. My actual 26 year legal career started 6 months after the surgery. Before the surgery I passed the bar exams for CT and NY, but had not yet gotten my first job as an attorney. The career I have had wouldn’t have happened without J Pouch surgery- of that there is absolutely no doubt.

CTBarrister posted:
Pouchbro posted:

IHowever, I am going to asssume that you completed Law School before your complications got severe and if so you are fortunate.

This would be a wildly inaccurate assumption. My 3 years of law school were my last 3 years before I had J Pouch surgery. I missed extensive time and numerous classes, and the bar exams were difficult for me to complete because of all the bathroom trips. I was on 60 mg Prednisone during 3 days of bar exams and wouldn’t have made it through the third day but for the Prednisone slightly ameliorating things. That was when I decided to have surgery. I realized a legal career wasn’t going to happen for me unless I had surgery. There was then a final scope showing dysplasia in my colon and a wait for a period of months to get the surgery scheduled in New York City. My surgeon reported my colon was dissolving in his hands when he removed it and that toxic megacolon was in my immediate future if I didn’t have surgery. My actual 26 year legal career started 6 months after the surgery. Before the surgery I passed the bar exams for CT and NY, but had not yet gotten my first job as an attorney. The career I have had wouldn’t have happened without J Pouch surgery- of that there is absolutely no doubt.

This is very insipiring and I apologize for assuming. As they say, assuming makes an a** out of u and me. a-s-s-u-m-e ( On a lighter note, someone feel free to insert poop joke here) 

Pouch bro ; I will have to apologize for not needling to apologize.  I do not have some of the adverse side effects or , associated symptoms related to having a ileoannal reconstruction . I guess nobody dose being that we are all cured, right. 

I know that there are systemically several conditions and combinations that Social Security uses to determine a disability . I was trying to plan for when I got worse and I was employed working as long as I could.  Social  Security  list the pouch surgery as cured for IBDs`.  with any large system the main thing is preserving the  solvency of the system.  Some pouch surgeries preformed  on persons whom can not afford it or back then had no health insurance and  become disabled  from Crohns or CUC ect... and determined to be disabled by SSI, are able to have the surgery based on it is justified as a "CURE" to get them back into the Medicaid, tax paying workforce.  Which is all good and well but, for the people that let say have a more sever autoimmune disorder and complications and as they get older and try to stay employed as long as they can for their own betterment  in order to keep there employee benefits that they have been paying for and, lets say they have disability insurance  and, then after 25 years of factory assembly line work  and, after the 21 years of symptoms  and complications of being "CURED" becoming increasing worse  your G.I. surgeon/doctor has to eliminate your FMLA  because as you need it more for what it was in acted for it has been brought to his attention that your patient  is adversely effecting his reputation . I think this is where Paul Harvey would say " and now for the rest of the story".

 I do not mean to get off track but, it can be unreasonably ; I would not say "difficult" because I am using the word "unreasonable"  in its` true definition. The systems can be unreasonably opposite for some individuals` cases/ lifes. An analogy that persons can see is when a national or international injustice is only addressed when the media has brought it to public attention.  Like the Gulf War Sickness or,  I would mention young males having been molested for decades, but I well have to stop there stating that as only an analogy of how unreasonably opposite a system can be for the individuals.  The determination that SSI uses as the pouch is a "CURE" is final and one factor.   That is for the physicians also.  If you are fortunate that you are cured than, that dosen`t matter to you, you don`t need to be told that.  For our other brothers and sisters whom prognoses is a hard road  ahead and have so much on their plate it can be one giant steam roller.  Imagine if they were on a voucher system of health care. 

 Thank God for the right to a free press.             

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