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Irritable pouch syndrome in the state of CA- elligiable for disability?

D DAS 2680Member
Hey all, so long story short, I got UC in '06, shortly thereafter (a few months) had my colon removed in a J-pouch surgery, hate-hate-HATED my temporary colostomy bag. Have suffered on and off in the last 7 years, especially since 2010 when I had my gallbladder removed. Opium was the only thing that helped at that point which subsequently caused me to lose my job. I got off the opium, but BM's are around 15-20 per day. I'd been on disability for around 6 months but it was denied in Dec. based on the fact that I didn't have "documentation" from a specialist of the disease. I haven't been seeing my regular GI doctor as he wouldn't sign my disability papers the first time around because "his office doesn't deal with that stuff." I'd been his patient for over 5 years, and that really stung. So I started seeing my family doctor and she was happy to sign those papers for me. So after the disability was denied in Dec. I made another appointment (for today) to see a different GI to see if I could get him to write a letter that would provide documentation of my disease. But when I saw the doctor today, he gave me the same cop-out of how he "doesn't deal with disability;" however, he agreed that I was disabled and referred me to a surgeon on the grounds that what I have is "fixable," and I need to get a colostomy bag. He didn't do an exam, but if he had, he'd have seen that my ass-hole is red and inflamed approx. 6 inches all the way around, and I have an awful rash in my groin area from all of the moisture.

I have 3 small children under the age of 5 and my wife works full time and can't miss any days since she's the only one bringing in any money at this point and already used all her sick days on maternity leave. So how am I going to fit in this surgery? and with what money? I'm at my wits end, because the doctors have made me feel like I really don't deserve the money from disability but I don't know how I could work (I was a high school teacher) without my job performance being seriously affected by my disease, then come home to a house full of 3 young children where I literally never get a break. I need 12 hours of sleep a day to feel rested, plus I struggle with depression.

I have tried everything there is to try, I know there are no other alternatives other than surgery. How can I get the doctors to sign? Why is it so hard to get them to do that? Do I just need a new doctor? It seems weird that I should have to keep switching...
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S StoneMember
I had a doc once that said he would not do my paper work either. Then I went to another doc he was a gi doctor he said if my primary doctor was up to doing the papers he would be glad to help. Its pretty screwed up how they go about it. If they want to. They no your sick as hell but only if they want to. They no u can't work while running to the restroom 25 times a day . Its pretty sad my friend. You just have to find the right doctor thats it. Someone who wants to do it for you. The fact is i don't no if a new doc will do it for you right away he might want to get to no you first. I hope you find someone to help you. Try to find a doctor with some heart. Good luck my friend ..
C chiromancerMember
Not sure but I thought The CA disability program was short term, 6 months. That was all I got. This was due to surgery and cancer treatments. I was on unemployment compensation when diagnosed. At some pt it was impossible to even consider working and I went on CA disability. My recollection was that after 6 months you went to SSI the federal program, through social security. I at some pt recovered got a doctors release and stared looking for a new job I was then eligible to go back on unemployment compensation. Because you are unable to work you may have to apply for SSI which is not easy to get
D DAS 2680Member
Thanks guys. I have disability insurance through my old job. I should be able to get short term disability for 2 years, and would then be required to apply for soc. security if I still needed it at that time. My wife wants me to her a lawyer...do you think it's necessary our should I just keep trying doctors until I find one who will sign for me?
Scott FScott FMember
From what I hear SSI is almost impossible to obtain without a lawyer's assistance, and difficult even with that assistance. Sue's point is very important, though, even if it's hard to hear. As much as I also hate hate hate the idea of an ostomy bag, I hate the idea of *being* disabled even more. If there's a way to get well, or at least able to function effectively, that's a brass ring worth reaching for, IMO.
D DAS 2680Member
You're absolutely right. And after my visit yesterday with the GI, I'm setting the wheels in motion for it to happen. Is it true that ostomy bags nowadays don't fart and make lots of noise? How often do you have to empty it? It seemed like my temporary one needed to be emptied 6 or 7 times a day...
Thank you for your post about the CCFoundation...will definitely look into that!
C chiromancerMember
There are two ways to approach going to an ostomy. One is disconnect J pouch and create end ileo leaving J pouch in place. The other is to excise the pouch and create an end ileo. The first option is what I tried, pretty simple surgery but it didnt work well due to excretions from the disconnected pouch. I had the pouch excised in mid December. I am pretty happy so far. Probably empty maybe 4 times a day and once during the night. It takes only a minute or two. As far as farting/noise I dont have much problem with that though it does make some noise once in a while. You need an experienced surgeon to do a pouch excision it is a complicated big surgery with potentially some undesirable "side effects" ie sexual dis-function.

Have you been tested for C Diff?
fqfqMember
glad to hear you have decided what to do. Just wanted to say i had a friend in a similar situation in CA with disability. the disability insurance company is very strict and will outright deny any claim not supported by medical evidence/documentation. my friend's family dr. submitted documentation and it was denied. they specifically wanted "clinical evidence" (test reports, MRI, etc) that showed she was actually disabled from performing her job duties. then they have an in-house expert/nurse review the documents. people work all the time with IBS/IPS and all kinds of other ailments. So the insurance does not consider those things as "disability". doctors don't want to deal with insurance companies and the headaches and legal implications associated with them. Also, some doctors feel that working some job (if we can) is good for us psychologically and physically. They KNOW we are most likely depressed from the disease and surgeries and encourage us to move on with our lives and have some normalcy as much as we can. They KNOW if we are out and about we think about our condition less. They KNOW there are tons of j-pouch patients they have with issues that still work. So you probably won't get a lot of sympathy from them. Some people are lucky and find really good doctors that know how to properly document. Or they go to a disability lawyer who knows all the loopholes. it's tough, but guess they err on the side of overly strict to prevent people from milking it. Once it turns into long term disability it's even more strict (probably depends on the state). If they find out or think the claim is not supported (e.g. you are out doing lots of activities and not working), it could impact your ability to get paid or hired. They put cameras and followed someone I know on LTD, and eventually stopped paying him because they saw he was out playing sports and other things. Not sure if that is legal??

anyway what they told my friend is that she needs to figure out with her employer how to make accomodations for her work. Whether it be working part time, working near a restroom, working from home, or even finding a new job at some point...that's what she needs to do. Most of what we go through is not considered a disability from work, depending on our job, unfortunately. Sucks, I know. Anyway, just wanted to share what I heard. good luck with everything.

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