Returning to Work After Ileostomy/Rectum Closure?

I am 7 months out from my ileostomy/rectum closure. I still have 2 small openings around the rectum area and they leak continuously. I am unable to do any lifting or squatting for fear of further damage. I forgot to mention I had hernia surgery less than 6 weeks ago. I was an elementary assistant principal in Texas and worked 60-70 hours per week. The stress, physical demands, and hours nearly killed me (disease included). I resigned from my job in Feb. I do not plan to return to work this fall for fear of Crohn's issues returning. I would not be able to endure the physical demands at all. My gastro doctor told me I was not an invalid and I should return to work as soon as possible. I have been an educator for 24 years. I have worked every summer since the age of 12 and put myself through college with athletic/academic scholarships. I was furious with his statement and wanted to curse him out. I have lived with this disease for over 20 years. I have had various hospital stays, surgeries, and a month-long stay after my ileostomy due to complications requiring emergency surgery. I lost down to 99 lbs. and I am 5'9". I really can't afford to stay home because we have 2 daughters in college but I am finally putting my health first. Have all of you been able to return to work without further complications? I am still so angry at my doctor I am considering changing. I am not lazy, I want to work....I wish he walked in my shoes just one day.

I don't know how it is in the US but I think resigning was the wrong move. Doing so might have lost any long-term disability you might have been entitled to. I would check with a lawyer and see if that can be reversed due to stress or some such. Even reducing your work week to considerably fewer hours might be an option. In any case, if at all possible, let them fire you or try to claim wrongful dismissal.

Next, I definitely would get a different doctor. Just remember a$$holes need not apply. I believe it is commonly accepted that an ileostomy is considered some level of disability. That, combined with Crohn's disease, should allow you to go on long-term disability and consequently obtain a reasonable income to allow your two daughters to continue college.

While I live in a different country, my surgeon has confirmed my "disability" by filling the required forms. These forms state that due to my ileostomy, it takes me considerably more time to do my daily functions. Therefore, I am eligible for extra tax deductions and/or additional government support payments. I believe Canada is not unique in this.

I wish you all the best and let me know if there is anything any one of us can do.

Ed

I think you were wise to resign, to do otherwise would just cause issues. Unfortunately, the disability system in America is so wrought with fraud that people who actually deserve it can't even get it. Perhaps you could qualify for "partial disability", you will have to be off work for at least a year...and get a lawyer to be seriously considered. The system is broken.

As to your doctor, on your next visit, ask to borrow a latex exam glove... fill it with water and tie it shut....now hand it back to him and tell him to imagine it's full of crap...then tell him to put it in his waistband and finish his workday with it in place.

Hi - Here is my story. Maybe you can pick up something worthwhile from this (note the internet sites):

When I first left work and applied for disability, I had been through several surgeries for intestines that were ravaged by Crohn's. I had most of my intestine cut out (short bowel). I had an ileostomy. I had holes (fistulae) that were leaking and not healing for a long time - years. I was low in weight and malnourished. I was taking intravenous nutrition (TPN) on and off.

I was successful in getting SS disability and Medicare health coverage the first time without a lawyer. I don't know a lot of the details because my parents did the paperwork for me as I was too sick. But I am sure that the doctors had to complete questionnaires supporting my case. As an ongoing measure, my doctors have to do those questionnaires periodically - forever. So you need to have doctors on your side. There are lawyers, like Binder and Binder, who can help you - your odds of being successful are much higher with this help. The government has specific guidelines they use to determine if you are adequately disabled for disability. You can read about this online (http://www.ssa.gov/dibplan/dqualify5.htm), but again, the lawyers really know this stuff. In addition to telling you whether you pass those guidelines or not, I imagine they can also advise you whether changing doctors is advantageous. If you try the application yourself and are denied, these law firms also help with appeals.

As far as your job, you need to find out what your health benefits are - whether you need to be severed by the company or if you can resign. I myself was severed by the company, but I do not know if that is why I got short-term and then long-term disability. As a side note (I learned this too late): because I opted to pay my long-term disability option with before-tax dollars (as opposed to after-tax), my long-term disability money was income taxed. It is too late for you on that point now, but others who read this, take note. Here is one (of many) internet articles on work disability: http://www.hcvadvocate.org/hepatitis/hepC/How%20to%20leave%20work%20on%20DB.html. It says not to resign, but I did not read the whole thing. Maybe you can take advantage of some of its ideas.

Anyway - I say, knowledge is power, read what you can, consult experts.

MMsh why do you agree with resigning? Would it not be better to have been terminated? Resigning leaves you no options for job-related disability support. As for your comment about the doctor, cute but he clearly doesn't understand the problems. Otherwise, he would not suggest returning to work, unless HfT doesn't have the problems he says he has or his problems are mental. Reading more and more about the difficulties associated with Crohn's disease, I'm just glad my problem was just a bit of cancer. In any case, it appears some doctors are just not worth dealing with.
I like the advice "aHappyGirl" gave.
Hopefully, there will be others who can advise you.

Hot, your post drew a lot of great and very useful responses. Here are a few thoughts that ran through my mind as I read this thread.

Social Security Disability Insurance is very difficult to get on your first application. People need to persist and reapply two or three times. My wife had to leave her nursing career because of breast cancer and I did all the paperwork. Fortunately, we got SSDI on the first shot. I made sure to complete all the paperwork with doctor's supportive information, etc. I also made sure to make a nuisance of myself with the local SSDI office. Two years after being on SSDI she automatically went on Medicare. If your GI doctor thinks you are capable of returning to work, however, your chances of approval are slim to none.

School building administration, on the other hand, has become an extremely difficult and stressful occupation with all the new evaluation models, bullying interventions, and assessments. You are well advised to stay away from that arena. There are some other positions in education, however, which you might consider in time if you feel your health would permit: e.g., curriculum, personnel, or subject matter supervision. If so, go see your former district's superintendent and discuss possibilities.

I think you need to give yourself time to see how your surgery works out and whether or not Crohn's will continue to take its toll. Good luck and all the best!

PB

Ed, I may not have been clear, I agree that being healthy and alive is more important than having a job... given that basic choice, and not even considering the finance issues.

Doctors are used to being treated almost like kings... I know from experience that if you are firm (but polite) with them... and hold their gaze... they will consider your views.

As an example, I refused the last third of my chemo treatments... My quality of life was poor, my lymph nodes came back negative (so I thought I had a good chance of surviving)... My doctor was not happy and insisted I complete them... I politely told him I would rather jump out his third-story window... Looking him directly in the eye and holding his gaze... Slowly... I saw a smile creep across his face. Today, all these years later... I still see him once a year, we have a very candid relationship and discuss world news and politics, etc... "Off the record".

Hi ... though I would throw my 10 cents' worth in... My issues were UC (Ulcerative Colitis), which led to an emergency ileostomy in '09 and a rectum/anal removal in 2011. I gave the latter surgery over a year to heal without much complaint, but there was considerable discomfort from scar tissue. It felt like I was walking around with a stick in my butt... literally! I went back to the surgeon, had an MRI, and they discovered a sinus, otherwise known as a small cavity, which led to a referral to a plastic surgeon and a quick, uneventful repair. However, I did not have any leakage, but the area was continuously sweaty... This isn't how it's supposed to be... It should not leak, and it should be dry.

If the comments regarding going back to work came from your primary surgeon, kick him to the curb. He is a quack. Crohn's, since it affects the small intestine (unlike colitis, although colitis can affect all digestive organs but is commonly a rectal/colon issue), does leave many sufferers with continuous abdominal distress. Add that to anal discharge, possible surgery complications, apparent weight loss, not to mention the stress relating to your health, family, finances, and possible work stresses... It seems doubtful to me that you are in any position to quickly return to work. You need to find a surgeon who really knows his stuff, who can help you get healed and then move forward. I am not familiar with the American public disability system, but I do know Americans who, for health reasons, have been awarded early disability through the federal pension system (sorry, I do not know the proper term for it). In Canada, I believe it's called the Canadian Pension Plan Disability Benefit. Good luck... I empathize... But finding a surgeon who is current and highly skilled is of utmost importance to healing timely and properly.

Everybody heals differently and at different rates. I had ulcerative colitis and lost my colon and rectum. I have an ileostomy and my rear end was closed up. I had a small portion of that open shortly after surgery but it healed up. If you have openings that shouldn't be there, try a different doctor. I was able to return to work within 2 months of my surgery, and I was doing very physical work and have since then. That was over 20 years ago, and I'm still going strong. But we're all different, see if you can find someone to help you, and once you are completely healed, see how much you are able to do. Go at your own pace. Good luck to you, and I hope you start getting better.

Wow, I can't thank you all enough for all of the responses. I resigned due to pressure from my human resources and benefits coordinators in my district. Legally, they cannot do that but I was not at a point to fight them because I knew I had another surgery (3rd in less than 4 months) coming up. I was using FMLA benefits and only working half a day prior to my first surgery because I was losing weight and malnourished. I paid into disability through my district every month for over 23 years and I am receiving those payments. However, the income is one-sixth of my original salary. I am not a candidate for Social Security benefits because we do not pay into SS in Texas as educators. I can only receive those disability payments if my doctor will fill out the paperwork and I am only entitled to it for a maximum of 3 years. I have every intention of going back to work when I heal but I am not there yet. I would have to return in less than 8 weeks and I have pain and leaking associated with the rectum. I see my surgeon in June and he will let me know what is next. I am considering changing gastro doctors because he really ticked me off at my last visit.
I just want to say again how much I value this site. I am new to all of this and it has really lifted my spirits knowing there are other people out there who can relate. My family is supportive but they don't realize what we have lived through and will continue to deal with. God bless you all!

While I am not a lawyer, a good friend of mine is. And since I maintain his computers, including ensuring backups, we have often discussed various aspects of the law, including wrongful dismissal. I assume that both Canada and US law are based on British law, except for Canada's Quebec province, which is based on French civil law but British criminal law. The same concepts apply in the US, and having your human resource department pressure you into resigning may very well constitute wrongful dismissal. It certainly would here in Canada. So if you are up to it, you might want to consult a lawyer (on contingency?) and have yourself reinstated so you can go on long-term disability.
Just a thought.
Good wishes. I hope you do well.
Ed

I am living in the UK which has different laws to the US. I have only just turned 60 and not due to retire until I am 63. I work in the operating theatres, clinic and around the hospital as a Surgical Care Practitioner. I had a subtotal colectomy in 2011 with emergency complications post-op and ending up in ITU. In 2012, I had the second part of surgery with proctectomy. The very short time between surgery and 6+ hours each time on the operating table has left me very weak, tired, and other symptoms from the surgery. Since day one of my last surgery, my stump has retracted in and I have to have further surgery. The problem here is, I now have a highly active bowel and I have no formed stool but liquid. When I am assisting and suturing up in theatre, I always find I leak from the bag at least twice per operating list and this is embarrassing, not fair on the patient, and making me so tired as I have to assist with every patient for that day. During the night, I get up 2-3 times to empty the bag and by the morning I am knackered. I have decided to see if I could be retired medically early. I saw the doctor in the Occupational Health department and he agrees that I am medically unfit to work. I am pleased with this as I want a quality of life now. I may find that it will be hard moneywise but hey, life is short, embrace the moments. I am just waiting for an answer from the board of governors to see if they agree and know I will have my life back.

Hello, I have read your topic about the problems you face with work. I am attempting to get back into a working job, and I am not sure how I will go and am worried about problems that can occur, or the other thing is if I don't go back to work then what do I do to occupy my time.

Some of my week is spent volunteering to work, I immediately seem to be getting problems with my ileostomy bag. Not physical symptoms just that people seem to want to know what I'm hiding under my shirt or why is there a belt around my stomach? These are visible to people and I had an argument with someone not even about this situation however I get the impression it was about something else. So at the time I was aware that when my shirt pulled tight or I was feeling my stomach the other workers think I'm hiding something, which I am, which is none of their business, yet I end up getting in an argument! So these are just what I'm experiencing in a volunteer work environment and I'm not sure what to expect in a paid situation.

I read what you said about the return of physical symptoms and that totally puts me off wanting to do any more work. If I get sick again I don't think I'll cope too well. I know what you mean with heavy lifting and some real physical stuff and how it's difficult to do, difficult to do properly. So I'm really lucky that I have not had complications recently, yet I'm trying to figure out where to go next. Jeopardize my health and be working for a living, I'm really unsure what to do with myself.

Any advice?

I'm going to keep in contact with as many health professionals as humanly possible. Needy huh, well it's keeping me stable until I can figure out what to do.

Thanks everybody

I had UC and Crohn's - had my colon removed and now have a permanent ileostomy. Thankfully, I have had no other symptoms regarding the Crohn's.

I went back to work after two months - my friends and managers know I have an ileostomy - I'm not embarrassed by it - it's what cured me.

I had gall bladder surgery three weeks ago and am back to work this week.

I would not go back to work until I felt secure about my ostomy and my health - my surgeon made sure I was ready to go back to work before he released me.

I was physically ready to go back to work both times but emotionally I was unsure. I had good and bad days when I went back but am happy to be working and getting out and about - before the ostomy, I was housebound.

If you are not physically able to go back to work, your surgeon will support you. I find GI doctors to be useless for the most part - once I had my ostomy, my GI pretty much cut me loose.

To heshootsshe scores - I think you should at least try going back to work - it sounds like you might be ready - you can change your clothing options if you think they are drawing attention to your ostomy. Some people can be ignorant and ask insensitive questions - develop a pat answer for those people - don't let them hold you back.

Marisa