Question about SSDI

When I was approved for SSDI I was still in the mess and suffering after my 3rd surgery in a 4 month time frame and heading for another.  I was wondering though has anyone ever lost SSDI after their symptoms lessening again i.e. remission or still flaring but more mildly than when you were approved? 

The reasons listed of IBD rulings that are used to determine disability for social security are

Inflammatory bowel disease (IBD)documented by endoscopy, biopsy, appropriate medically acceptable imaging, or operative findings with:

A. Obstruction of stenotic areas (not adhesions) in the small intestine or colon with proximal dilatation, confirmed by appropriate medically acceptable imaging or in surgery, requiring hospitalization for intestinal decompression or for surgery, and occurring on at least two occasions at least 60 days apart within a consecutive 6-month period.

OR

B. Two of the following despite continuing treatment as prescribed and occurring within the same consecutive 6-month period:

1. Anemia with hemoglobin of less than 10.0 g/dL, present on at least two evaluations at least 60 days apart; or

2. Serum albumin of 3.0 g/dL or less, present on at least two evaluations at least 60 days apart; or

3. Clinically documented tender abdominal mass palpable on physical examination with abdominal pain or cramping that is not completely controlled by prescribed narcotic medication, present on at least two evaluations at least 60 days apart; or

4. Perineal disease with a draining abscess or fistula, with pain that is not completely controlled by prescribed narcotic medication, present on at least two evaluations at least 60 days apart; or

5. Involuntary weight loss of at least 10 percent from baseline, as computed in pounds, kilograms, or BMI, present on at least two evaluations at least 60 days apart; or

6. Need for supplemental daily enteral nutrition via a gastrostomy or daily parenteral nutrition via a central venous catheter.

Short bowel syndrome (SBS), due to surgical resection of more than one-half of the small intestine, with dependence on daily parenteral nutrition via a central venous catheter (see 5.00F).

Weight loss due to any digestive disorderdespite continuing treatment as prescribed, with BMI of less than 17.50 calculated on at least two evaluations at least 60 days apart within a consecutive 6-month period.

At the time I applied I had a draining fistula and had had 3 surgeries and was on TPN via picc as well as being underweight according to the BMI the nurse said it seemed like I also had SMS however I did not have a huge portion of my small bowel removed more of large than small...ATM I am not anemic (for now) I am in my proper weight range, etc.  I am on entocort (max) pentasa (max) and Humira (weekly) and in my latest scope I was still mildly flaring.

When I get things such as a cold and cannot take my Humira within 2 days I notice the effects of not being able to take them and obviouslt the more people I am around the easier it is for me to fall ill

This was off the SSDI site, yes. 1

Hi Dragonfly
I am on SSD as well but not originally for Crohn's..
I have had it for the last 10 years and have never been called in to speak with anyone
They have sent me several sheets of paper to fill out and send back and then mailed me back a letter that they weren't going to "reevaluate" me now..
there is usually 2 or 3 years between these mailings.

I have also read that during times of very high unemployment (like now) they only "reevaluate" cases that they think might have been "cured" guessing they are thinking about bad knees or back pain or someone that may have had an operation that could fix them for good. It also depends on your age.. If you are over 50 there is less of a chance of them calling you in. Also I've read one of their memos that they have a grading system and depending what Grade you are is how often they reevaluate you.

IF you should EVER have to fill out their questionaires.. I was told by my disability lawyer to keep your answers simple.
You should also know that they send forms to all the doctors that treat you for your disability so they will tell SS the truth
They also have access to all your meds and other treatments so they know what you take and how often you need an infusion of humira etc etc

If you have A LOT OF PAIN (and I don't know ANYONE with Crohn's that doesn't) this alone should be enough for you to get by without them discontinuing your SSD.
If you have to lie down several times a day etc etc... You just have to word it in a truthful way and also mention perhaps the other "new" things wrong with you and other new doctors you have to see now on a regular basis since the original ruling... for instance.. now you have migraines twice a week that last for 6 hours.. etc etc, or if you are profoundly depressed or anxious.. or have diarrhea all day

about narcotics and pain.. (B3 in the thing from SS you copied) What employer would theoretically want someone working for them that has to take real narcotics all day for their pain?? and what police department would want that person to drive in rush hour to work like that ? (sorry if I'm offending anyone in here because I know that a good deal of you still are able to work) SS has to consider all these points when making a new ruling on you.

There's no point of them to discontinue your benefits if you can't hold a job because of your Crohn's, time you need to get your infusions etc etc, pain you are in, other conditions... etc etc.. IF they do somehow make the grave error of discontinuing you .. you are allowed to appeal
NY Veggie

I have been on SSDi for years.  No worries. they mail stuff to my GI and he says I am still disabled!  Hope your GI does the same.