Discouraged; and SSI question

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Regular Member

Date Joined Sep 2007
Total Posts : 32
   Posted 10/22/2007 7:04 PM (GMT -6)   
I had my second five week follow-up appt. today with the GI, a total of 10 weeks since my colonoscopy and dx of non-specific colitis.  Visually, there was inflammation and ulceration in various parts of the colon, but the biopsies didn't prove Crohn's, thus the "non-specific" part.
I've been on Colazal for the last five weeks, although admittedly I'm not taking it as directed.  I get headaches after I take it, so I take one capsule instead of three, twice a day rather than three times.  I can't blame anyone else for that-it's my own bad judgement.
Luckily, the d has cleared up, now I have trouble going at all lots of days.  I have gas and loud bowel noises, and pretty much continual pain in my left side.  I also have recurrent diverticulitis infections on the left side, though I haven't had that since June. 
Since July, I have only been able to eat plain Greek yogurt, plain crackers, noodles with bland sauces, and turkey sandwiches on white bread with cheese.  Every time I try to add a new food, I either have intense pain, bleeding, or d.  Plain baked chicken breast with no seasonings made me hurt for three days.
The GI was concerned that my left side is still so tender, and that I'm still eating such a limited and bland diet.  She said she would put me on a medication that would help me a lot, but there's no way I could afford it without insurance.  She didn't say what med she was thinking of.  She suggested I try to get on our state's group insurance.  The trouble is that the group insurance doesn't pay for any expensive meds, anyway.  They have a list, and only one GI med is on it, and it's the one I can't take at all.  You can only go to the doctor five times a year...yeah, right.  That'll work.   eyes
For now, I'm sticking to the Colazal, and going to take it correctly, plus she added Canasa for my poor sore ..... you know, and added Miralax daily, as well as Balneol cream, which I am already in love with after two uses.   :-)    I'm supposed to stick with the bland diet for now, and go back in two months.  She suggested I apply for patient assistance for the Colazal.
I think I'm going to attempt SSI.  Has anyone here had success with that?  I haven't worked for about ten years, will that hurt me? 

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/23/2007 8:48 PM (GMT -6)   
Hi Not sure what you should do about your insurance. I do know ensure is good for when we cain't eat much. A person can buy them at Wal-Mart over the counter. Glad the cream is working for you. lol gail

Regular Member

Date Joined Oct 2007
Total Posts : 106
   Posted 10/23/2007 9:03 PM (GMT -6)   
I applied for my SSI/disability but got turned down by the state go see a lawyer friday to fight the case! So good luck with that!
DX: Crohns in March 2007
Meds: Remicade

Regular Member

Date Joined Jun 2006
Total Posts : 267
   Posted 10/23/2007 9:24 PM (GMT -6)   
Hi Sweettea,
I have never applied for disability or SSI because (thankfully) I have still been able to work even with my CD, every day I pray that my luck continues in that aspect because without my medical insurance I would be screwed (as you well know because of your insurance woes). But I recommend you retain an attorney to try and get you SSI, a lot of them take these type of cases on a contingency basis so they don't get paid unless they win your case for you, so their success rate is going to be pretty high cuz nobody wants to work for me. Anyway, that's my suggestion on the best way to get your benefits. I agree with gachrons about drinking Ensure, sounds to me like you aren't eating enough to be getting any substantial nutrients into your body and I don't have to tell you how bad that is for your health. Please make sure you take supplements and I recommend you eat small "meals" every few hours, even if it's only cheese and crackers or toast/bagel, something like that. Please take care of yourself and keep us updated.
38 years old, dx with Crohn's disease March 2006, currently on Humira, Entocort and hydrocodone (for pain), and Effexor

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