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I have been so frustrated with the question of Can we work? I have been on LTD insurance since my surgeries (which I know I have been lucky). Now, they are looking to drop me based on being able to work a few hours a week. I am still not sure that I can. I do not sleep since I go several times a night. Have I gotten better...yes but am I where I need to be I don't think so.
I often have asked myself that question because I have been working since I was 12 years old. Do they really think I like to stay at home and worry about finances at this time in my life? I have read about depression on this site. Not working causes me depression and worry. Getting phone calls from LTD rep. causes depression because med. documentation supports that I can work a few hours. What company in their right mind would hire me? I was sick again Mon. and Tues. of this week! In bed in fetal position.
LTD guidelines are different from SSDI.
I have to say this jpouch surgery for me isn't any better than my UC at this time! I still go several times a day and night, I still have pain (more pain now than my UC days). No one seems to understand this only this site! So Frustrated and I don't know what to do next!!!!!!!!!! I don't run to the doctors every time I have a symptom, bleeding, vomiting, bone pain, muscle pain, blurred vision. I just live with what has been given me in this life and try to stay positive but I am so frustrated at this time!

UC 2007
1st surgery 2/29/2012 leap year
takedown 4/30/2012 several complications including pic line nutrition
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I am so sorry Roberta,
This is not the life that you are supposed to have with your pouch...a lot of people have a hard time in the begining of their pouch life but it is not supposed to are supposed to be better, functional and free of the worst part of it are not supposed to be curled up in bed suffering...why is this happening? Did your doctor give you a diagnosis. Is it pouchitis, cuffitis or what?
Yes, I suffer from pain (sacroilitis, joint pain and pouch problems but I am back to work and enjoying it even though I am suffering physically.
It may not be perfect but it is better than house-bound like the previous 3 years. I fast or limit myself to liquids and yoghurt in the daytime while out or I risk pouch problems during the is a sacrafice but I prefer it to what I lived the previous years...
I am heartbroken for you.
I agree that you shouldn't be living with a problem pouch. I second going to CC and seeing an expert. They may be able to remedy the problem because it shouldn't be causing you pain this far out from your surgery. I get up a couple of times a nights too to use the bathroom (it's my normal....I don't go all day long then, bam at night!) but it's quick I never have any pain. I know it's not good to have interrupted sleep but my body has grown used to it and I fall back to sleep right away. Still, I wish I could sleep all night. That's my one and only complaint with my j pouch. And yeah, I work. Part time in sales and a full time Mom. Try to get some help and I hope it works out for you down the road. Smiler
Roberta, I just started back at work after being on disability since January. I was able to work out with my job and MetLife that I could work 20 hours for 8 weeks and still have LTD pick up the remaining hours to start off. I didn't realize how great it is to be back especially not thinking about my pouch all day and it functions so much better now. When I was home that's all I was worried about so I had a much worse experience with it. It sounds like there is something really wrong if youre saying your days now are worse than your UC days. Have you talked to a dr recently and told them how you were feeling because you should be on the road to recovery and not getting worse. I haven't had those days anymore curled up in the fetal position that was only when I was suffering from a bad flare. The last time I felt a lot of pain with my pouch I had a partial obstruction that took me a couple days to pass. You need to make it urgent that you are having these issues to your Dr and not ignore them anymore. Yes there are things that we have to ignore now and realize that this is the way it is going to be but this surgery should not of made you worse. Please seek help ASAP and keep us updated.
I have an appt. with surgeon on Wednesday. I see a problem in my anus area which is white on one side. Feels like I am walking around with something in there. Did proctofoam over the weekend and saw much burning. Didn't sleep much when my intestine gurgles it wakes me up and I got to run to the bathroom. I know this isn't normal, now. Will see what he has to say on Wed.!
If you can see that white patch you've got a problem. If your surgeon doesn't do flexible pouch scopes please go to a GI IBD specialist that does. I'm speaking from my experience only here. My surgeon is a good surgeon but not good at treating cuffitis, pouchitis etc. My GI was great until the normal treatments didn't clear things up and he sent me to the Mayo Clinic, where he trained, to a GI specialist.

I am still on LTD insurance and I had my take down almost 3 years ago. I also have other health problems but I have chronic cuffitis and IPS. I know how frustrating it is to talk to the insurance company ALL the time. You need to show them that what you left work for is still what is keeping you from working. One of the problems you have sounds like depression from being chronically ill with the aftermath from the surgeries. This is all related to the UC and surgeries. You said it yourself, you feel worse than before and this is depressing. Look into the mind/gut connection and you'll see that chemicals are produced in the gut that work with the mind that are no longer being produced that can also lead to depression. I suggest you see your GP, if you have not already, and discuss your depression as you might need to try an antidepressant plus see a therapist. This will now only help you but will give your LTD insurance company one more doctor and therapist to send a confirmation to which will verify that you are not yet able to go back to work.

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