Community Forum

I had surgery back in March.  I had a ileococic resection and based on my health, weight, and age I was told I would have no problems.  Unfortunately, from day one after the surgery I have complication after complication.  I had the normal issues such as needing to have my intestines working again and plenty of gas to go with it. 

The issues that I have faced and I am facing are throwing up bile, an abscess, a fistula which they finally discovered after 8 CT scans.  The first hospital missed it the first 7 times and the next hospital caught it and says it looks better than before.  I have been in the hospital 5 times since March.  I have missed work and it is passed the 12 weeks allotted for medical leave.  I am primary insurance holder for my son and I.  I am still, after being on tons of antibiotics and remicade having problems with a fistula that has attached to my back.  My job requires me to be on my feet all day long and I have a hard time walking now, I am having high fevers every time they take me off antibiotics,  I keep missing work.  I am unsure if I should have surgery to remove the fistula or what my other options are.  The doctors are still not sure if there is an underling infection they can't find.  I know I will lose my job.  I not sure what to do.  Any advice?

 Reply posted for Chrissy4JC.

I hope you have taken the advice given.  I have had Crohn's since 1980 and had my only surgery in 2001, from an abscess.  After the surgery I then developed rectal/vaginal fistula, short bowel syndrome just terrible. I applied for ss in 2004 after trying to work and I was approved right away. I know it is very unusual to get it your first try, but I did.  All the meds you take for nausea, weight loss, pain meds.  Humira has now helped, but the malabsorbtion problems I will always have, with short bowel and the fistula is still there you just never know when you are going to leak with absolutely no control.  I have had pig intestine to fix my fistula and one went away and the other is worse than before.  I am not sure why the humira isn't helping with the fistula, but it sure has helped with diarrhea and fatigue.  I wish you well, please try for the social security, you have earned it.

 Reply posted for Chrissy4JC.

First, you should not be able to loose your job for heatlh related issues, not to say they wont come up with some other reason.  Second I had a terrilbe time after my surgery alot of similar problems then six months later I was so sick they found out I had gotten C-Diff from to much atibiotics or from the surgery.  Make sure your doctor test you for that.  Also, try to apply for SSDI benefits it sounds as though you may qualify, if not if you are denied there are attorneys that will get it for you if you really do need it. Also if you get denied once it is likely you will get it the second time you apply. 

Other wise hang in there, and try HUMIRA.  I finally did and its been a blessing.

Take Care

Kim

 Reply posted for ucshawn.

Hi Shawn,

Thank you for your posting.  I'm glad you were able to get help.

I worry constantly about what will happen if I have to have surgery.

Are you happy you had it?

thanks, and best of health...Laur

 Reply posted for Chrissy4JC.

Hi Chrissy,

It sounds like you've had a terrible time, and I am so sorry.  I really don't know a lot but you might even investigate some kind of Social Security Disability benefit as you truly have been unable to work. 

You might start by looking up the number in the Blue Pages of the phone book; there should be an office in your area.

Also, if you do lose your job you should be eligible for unemployment and continuing to pay your own health insurance which of course is ridiculously expensive.

Keep writing as you are not the only one in this situation and until we have some laws in place so that people don't lose everything when they get sick, we will all continue to suffer.

I would like to lobby our lawmakers to understand the seriousness of this disease and the need for help ....Please keep the faith and write soon.

Laur

 Reply posted for Chrissy4JC.

Chrissy,

I think you should investigate all of your options at work including STD, LTD and FMLA.  I also think you're a good candidate for Social Security Disability and Medicaid.  It is a complicated process; but with perserverance and possibly some legal help, I think you should qualify.  I'm so sorry to hear about your suffering.  I'm also the sole provider for my son.  I was able to get Medicaid for my son right away since I had been out from work for so long with Ulcerative Colitis.  I just had J-pocuh surgery and have not worked since April of this year due to all the complications.  It's been a rough time, but I've made it through and finally starting to see the light at the end of the tunnel.  I think you will too.  Best wishes,

Shawn

 Reply posted for Chrissy4JC.

Do you have any short term or long term disability coverage at work? I had the same surgery and was out for 8 weeks.  I am so sorry to hear you are having so many complications. I was on STD the whole time and my FMLA ran concurrent with it. My employer let me continue to pay my premiums out of my STD checks. Another company I worked for let me do the same during LTD (even though FMLA had run out). Is there a human resources person at your work that you could contact? Also, I lived in another state years ago and was able to get state disability for a short time and it was only for maternity leave. Maybe that might be worth looking into where you live. I really hope you get to feeling better soon!