Not so helpful email response from TSA

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Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 1/11/2010 11:34 AM (GMT -7)   

You may recall I wrote the TSA asking them to consider digestive disorders when writing their new security procedures.  My email is in a prior thread if anyone wants to link it here for me.  Here is their response:

Thank you for your e-mail regarding the Transportation Security Administration's (TSA) response to the December 25, 2009, incident when an individual onboard Northwest Airlines Flight 253 set off a device and was subdued by passengers and crew. We apologize for the delay in responding to your inquiry.

As a result of this incident, TSA has worked with airline and law enforcement authorities, as well as Federal, State, local, and international partners to put additional security measures in place to ensure aviation security remains strong.  Passengers traveling domestically and internationally to U.S. destinations may notice additional screening measures. 

On January 3, 2010, TSA issued a new security directive to all U.S. and international air carriers with inbound flights to the U.S.  The new directive includes long-term, sustainable security measures developed in consultation with law enforcement officials and our domestic and international partners.  TSA is mandating that every individual flying into the U.S. from anywhere in the world traveling from or through nations that are state sponsors of terrorism or other countries of interest will be required to go through enhanced screening.  TSA directed the increase use of enhanced screening technologies and mandates threat-based and random screening for majority passengers on U.S. bound international flights.  Passengers should allow additional time to get through security on international flights bound to U.S.  These times may vary by airport--check with your airport or airline.

Additionally, the directive gives airlines discretion in implementing portions of the security directive.  This includes passenger movement within the cabin and access to carry-on items. Passengers should contact their airlines if they experience problems regarding these restrictions or for special needs.  For more information and updates, visit TSA's Web site at

We hope this information is helpful.

TSA Contact Center


My reaction:

I emailed them because the answer to my question was NOT on their website.  Directing me to their website for more information is pointless.  The first half of this email has absolutely nothing to do with my question.  The part that finally gets to my question is extremely vague.  I read it to say "airlines can do what they want.  Call them if you have a disability."  I also love that it says "if you experience a problem regarding these restrictions."  They didn't tell us what the restriction would be.  So in other words, if after the fact, you have been injured by a discriminatory policy, feel free to call and complain.  I'm sure that would do a lot of good.  I guess what I take from that is talk to your airline and flight crew.  At least it is discretionary.

27 Year old married female lawyer.  Diagnosed w/ CD 5 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant but can handle anything cultured and do well w/ lactose pills and lactaid. For Crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

Regular Member

Date Joined Dec 2007
Total Posts : 63
   Posted 1/11/2010 6:54 PM (GMT 0)   

That is a disappointing response. Not very personable, like a copy and paste form. You made a good effort for us. Thanks.


34 yr old Male from NYC, DX with Crohn's in oct of 1987
Resection in 1990
Remicade as of  Aug 6th. 2009
Entocort 3mg, 3 pills each morning.
 Cipro 2x a day.

Veteran Member

Date Joined Jan 2006
Total Posts : 3141
   Posted 1/11/2010 12:22 PM (GMT -7)   
Well Fitzy you made a valiant effort, but received a luke warm response. It sounds like they do not want to commit to an answer (is that our fear of lawsuit??)
I think since you are flying domestically within the US that you should be able to address your issue with the flight crew at time of departure. My experience has always been it depends on the crew how flexible they are. I think it will still be that way. I would carry your CCFA card and show it to them, then explain it like you have in the past. That is what I will be doing when I fly at the end of this month---I am also pondering just wearing some pads so I do not have to deal with the issue at all (a la the astronaut chick hehehehe)
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 1/11/2010 2:21 PM (GMT -7)   
It sounds like a generic letter to me, and I suspect they have no interest in hearing about individuals' problems in coping with the new regulations - in other words, "we're doing what we're doing, and we don't care what you think about it."

Don't you love bureaucrats...?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 1/11/2010 2:22 PM (GMT -7)   
ps. I still think you're a hero for writing to them.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Regular Member

Date Joined Jul 2009
Total Posts : 83
   Posted 1/11/2010 2:26 PM (GMT -7)   
I think it's great that you wrote to them - seems like they are passing the buck on to the airlines to deal with any specific issues. I agree with talking to the flight crew beforehand...also I may be investing in some "adult diapers" myself for future flights in the event of not so helpful crew members.
**32 year old female; Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009 (but still only impacts colon)
**Asacol (4800 mg daily), 6-MP (100 mg daily), Prednisone (10 mg daily...for a few more weeks), Nexium (40 mg daily)
**Previous meds: Colazal (allergic); Flagyl (off and on for rectal inflammation); Rowasa (enemas only when needed); various pain meds (but luckily none lately); iron IV infusions (when hemoglobin gets low)
**Thankfully only two major flare-ups...2001 and 2009. Hoping to have another 8 years in between the next one (sadly, I do know there will be a next one).

Regular Member

Date Joined Oct 2007
Total Posts : 44
   Posted 1/11/2010 4:34 PM (GMT -7)   
I got the same exact generic form letter response too today.

I agree that they just want us to call the airlines. That is all I could get from it.

Veteran Member

Date Joined Jan 2003
Total Posts : 6117
   Posted 1/11/2010 11:24 PM (GMT -7)   
what if we just sat in our seat and kept saying "im gonna blow, im gonna blow!"

Veteran Member

Date Joined Jan 2005
Total Posts : 1823
   Posted 1/12/2010 4:26 AM (GMT -7)   
Hey Fitzy, how about taking this subject to your local news channel as a consumer issue? Or an investigative report maybe? You never know they might just give you some coverage.

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 1/12/2010 6:05 AM (GMT -7)   
Would it be bad if you say to the flight attendants (really loudly), I just dropped a bomb...what should I do now??
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 1/12/2010 11:00 AM (GMT -7)   
I actually flew on dec 13 as well as dec28/29 (fights cancelled etc oh the joy) There were no additional restrictions at either flight I know since then they have upped security again a couple of times. The cabin movement was only for non domestic flights from what I was told again that was prior to the 2 more recent adjustments. GL
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987

Veteran Member

Date Joined Dec 2005
Total Posts : 544
   Posted 1/12/2010 11:40 AM (GMT -7)   
I fly a little over 100,000 every year ...been doing that number since around 1996 and so I had and have very limited concern about the most recent edicts to come out from the Airlines and TSA.

Having been through this before right after the 9-11 attacks i was sure they would do what they did before.. ..relax the rules.

In late September of 2001 I had to fly to Washington D.C.... by then I had already flown about 3 post 9-11 flights and had no problems. I was not aware of any real "in-flight" changes and so i was very surprised when they announced that during the last 30 minutes of flight into Reagan International no was allowed to leave their seats for any reason. If someone did get up, we were told, they would be dealt with quickly, harshly and the flight would immediately detour to Dulles. I was concerned about my ability to hold things in if the need arose so I called for the flight attendant... I explained my crohns issues. The attendant looked at me like I was from Mars and then told me in a not so polite manner "tough" She said I would have to hold it and then asked if I was willing to be responsible for all of the people on the plane having to divert to Dulles. i told yes...if it came down to a choice of me soiling myself, my clothes, and the seat I was sitting in I would have no problem getting up...I explained that regardless of the policy my intent was if needed to get up and go. I suggested that she go find the lead flight supervisor and the pilot. She huffed off, but did get the supervisor and the co-pilot. I again explained the situation...they both said "ok, fine, sorry you have to go through this." Then they asked if i would be okay moving to a seat closer to the rest rooms and if i could try to signal them of my intent if the need became evident. I agreed. That was that... I didn't have to go... and on subsequent flights to Reagan (until the rules were relaxed) I explained the problem calmly once the restriction was announced. I purposely did not mention any issue until in flight because I did not want to chance the airline refusing me travel privileges.

Cool heads do prevail. My brother-in-law is a 25 yr pilot for NW and 5 before that with Eastern...he sits left seat and his statements to me prior to this and since have been that the pilot calls the shots in the air and that the comfort and safety of the passengers comes first.

If once in the air it looks like it may be a problem or they announce enforcement of the rule...just explain the problem with your being able to comply and then do what you have to do. I already have my next several flights booked...including international and do not forsee any issues rules or no rules.

I also have to add that the answer from the TSA is probably the best you can expect since they either can not or are not willing to impose their will over the individual airlines. It is what I would have expected given the previous experience with this stuff.

Good luck to everyone who flys
Tested BIOGEN TYSABRI (gave me 2 years of remission)
Naltrexone Surgery Nov 4th, 2008 removed 30 inches of small bowel.
Tried Humira for over a year no help....been on Cimzia since April 2009 very little change

Crohns is currently active and has been since April of 2005

Just started back on Prednisone 50mg and now 6MP (150 mg) started as of Jan 2010

53 yrs old

Regular Member

Date Joined Jan 2010
Total Posts : 20
   Posted 1/12/2010 5:33 PM (GMT -7)   
This is great information. I am new here and am just soaking up the info. Quick question, what is a CCFA card? My husband and I are travelling to Panama in 3 months and my Crohn's isn't fully under control. Pretty nervous about flying in the first place but these restrictions make it even more nerve-wracking. What does a CCFA card do?

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 1/12/2010 7:04 PM (GMT -7)   
Good post, Hpspenser.

These restrictions are only on inbound flight to the US from other countries. This is not a worry if you are flying within the US.

Second, the TSA is not administering these restrictions - the pilot and crew are. If they want to restrict movement in the last XXX of the flight, they will tell you then. If they do, which does not seem to be consistent even on international flights, talk to the FA about your potential issue and find a solution that works for the pilot/co pilot and you.

I'm sure that is why the TSA can't give more info - they aren't on the flight making the decision.

I honestly think that the likelyhood of any of us experiencing this issue is slim to none. Having a game plan before an international flight back to the US is always a good idea, and the situation Hpspenser posted above sounds like the likely scenerio.

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 1/14/2010 8:37 AM (GMT -7)   
Thanks, all. To the poster asking about going to the media - it is something I would definitely do but unfortunatly I just don't have the time right now. I'll consider it in the future though.
27 Year old married female lawyer.  Diagnosed w/ CD 5 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant but can handle anything cultured and do well w/ lactose pills and lactaid. For Crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

Veteran Member

Date Joined Mar 2006
Total Posts : 1034
   Posted 1/14/2010 6:30 PM (GMT -7)   
i got no problem dropping my pants in the aisle if they wont let me use the bathroom. it will be such a raucous that all the passengers will know what is going on and will be on my side to get me in the bathroom. i'll also push my way in to use it - let the air marshal stop me. i will not have an accident in my shorts and sit in it, unable to change or clean myself, cos some one would not let me use the bathroom "for my protection". lame. i'd rather the whole plane share my embarrassment then sit in my shame by myself. i truly dont have a problem doing this. the way i see it, two can play at this game. they can clean up the carpet cos i dont plan to clean up myself or my clothes after an accident they caused. i would do this pride too.
Crazy Harry

Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

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