MEB after Proctocolectomy/Permanent Ileostomy

A place where Military Veterans with Ostomies and Diversions can discuss items of common interest.
Anyone can read. Only registered users can post.
No commercial posting allowed.

Moderator: Jimbob

Forum rules
Before posting, please read our Discussion Board Terms and Conditions and our Code of Conduct.
Post Reply
NavySailor
Posts: 2
Joined: 2013-11-11 00:21:21

MEB after Proctocolectomy/Permanent Ileostomy

Post by NavySailor »

Hey, everyone! I'm excited to have found this site and to get the chance to talk to other AD servicemembers and Veterans with ostomies :) To give you a little bit of background...

...I joined the USN in 2007 and didn't have symptoms of IBD until around the end of 2011. I had a colonoscopy at Tripler AMC and was diagnosed with UC (proctitis). Over the course of 2012 and half of 2013 we tried Asacol, hydrocortisone and rowasa enemas, prednisone, 6-MP, and Remicade to get me into remission, but nothing worked. I went from 150lbs down to 114lbs in a matter of a couple of short months. My PCM told me she was going to initiate my MEB paperwork since I had to be waived from a few PRTs due to my horrible symptoms. When I followed up with her several weeks later to check on the status of the MEB she said she didn't know what I was talking about and that I didn't have enough time left on my contract to initiate an MEB. I turned in my re-enlistment quota in May of 2013 when Remicade seemed to be working thinking I would simply separate at my EAOS, file a VA claim for my UC, and look at using my Post-9/11 for college. Little did I know that just 3 months later Remicade would stop working for me and I would land in the ER and eventually on August 21st of this year have to have my colon and a small portion of my small intestines removed and a permanent ileostomy created. I lost bladder function after the procedure and also developed an abscess that required the insertion of a drain to fix. Three months later and I am just now starting to get bladder function back, and the abscess seems to have cleared up, but I have been told that the UC is now causing painful swelling in my joints. Sometimes when I get up to walk after sitting for just 10 or 15 minutes I have to shuffle and can't bend my ankles due to the pain. A couple of doctors think it could be due to poor adrenal gland function from being on 40mg/d of steroids for about 10 months straight (which leads back to blaming it on the UC). I'm going through several more tests right now to figure out the cause of everything going on.

Anyway, I had the surgery on what was supposed to be my last day in the Navy, but I was extended for about 4 months in order to go through the MEB process that I should have been put up for last year. I am curious to know if there is anyone else in this community that went through the MEB with an ileostomy with a situation close to mine. I know of a couple of people that wanted to be found fit since surgery took away their debilitating symptoms. The difference with me, though, is that even if the board finds me fit I will still have to separate in 30 days after they come back with their findings because I turned in my re-enlistment spot in May of 2012 and that decision can't be reversed/changed. I realize each MEB is a bit different, but I am wondering if there's a precedence of medically retiring AD servicemembers with a permanent ileostomy (even better, anyone with experience of being med-retired with a perm ileo and lingering inflammation in their body from UC).

Sorry this is so long, but I wanted to add that "Chip" (my stoma's name!) and I get along very well, and I would go through the last 3 months all over again to be where I'm at today. The surgery not only saved my life but gave me my Quality of Live back, and I can't thank my surgeons, nurses, and family enough for all of the work and effort they put into my case. Now I'm just curious as to how this next part (MEB, poss retirement) of my life will play out!

It's still only 2050 in Hawaii, but Happy Veterans Day to you all tomorrow :)
User avatar
Mike ET
Posts: 634
Joined: 2008-10-23 06:23:43

Re: MEB after Proctocolectomy/Permanent Ileostomy

Post by Mike ET »

Hello, Navy.

Your post asks a few different questions that are somewhat related.

1. If your rectum was not removed then it is very likely that your UC related extra-intestinal symptoms will persist. As long as there remains any active IBD in remaining body parts, the disease will still present periodic problems. If the actual (final) diagnosis is UC and not Crohn's disease, the only known cure is total surgical removal of colon and rectum. Thus, you may have to reevaluate the status of your rectum and decide what long term course of action to take to be rid of or reduce recurrent IBD symptoms going forward.

2. MEB, which I assume means medical evaluation board, will likely require you to be medically discharged or retired from active service; especially since you remain with active disease. Given the overall economy and the drawing down of overall troop levels, it is more likely the case you will not be considered for active retention.

3. On a personal note, I was temporarily medically retired from active Navy in 1965 for UC. While on retired status my UC flared up very badly and necessitated a total colectomy and proctectomy, which was undertaken in a Naval hospital close to my home.

4. Your ongoing options for medical and surgical care will have to be determined by you and the VA. Make sure you get fully squared away with whatever entity will accept your ongoing needs as an ostomate and IBD patient.

Mike ET
ostomy can present an identity crisis of image and function, and require tradeoffs.
Rotorhead
Posts: 385
Joined: 2008-08-27 23:45:48

Re: MEB after Proctocolectomy/Permanent Ileostomy

Post by Rotorhead »

I went through a MEB for colon cancer/permanent colostomy. I was treated rather poorly and have since fed that info back through to the medical community. Basically, you are lumped in with the malingerers and those who are looking for a way out of service. Everyone assumed I wanted to get out. I did not; I had to change a few minds and have a few one-way conversations, but I got the point through and ended up being found fit for duty, and eventually regaining flight status (with a waiver). Unfortunately not deployable so my career timer is almost out (not much use for a sailor that can't deploy).

You have to be proactive and reach out to your limdu coordinator, Navy doc (since it's unlikely your Tripler doc is consulting with the Navy doc at Makalapa or K-Bay), tripler team, and command. No one will work together voluntarily and if you wait for folks to take action autonomously, it generally won't happen. As we're lumped in with the bad eggs, we get the appropriate priority. Keep folks in sync and make sure you document every visit, the name/rate/rank of who you speak with and their contact number. If there is an expected date for the MEB to make an evaluation (not all cases go to a board), find that out and track it close. They will determine a few things: Fit for full duty, fit for partial duty/limitations, or not fit for duty. Not fit and partial are basically the same and will end in a discharge. From there it will be a determination of your disability and whether you will be medically retired (based on a number of factors, tied to a minimum time of service) or simply put on a permanent disability rating (meaning you are eligible for VA care once out). It would be hard to imagine any other contingency - you'll clearly get a significant disability rating. Do your homework here - ensure all your side effects and changed body functions are well-documented in your record. It's not too early to talk to the VA disability folks - I think they are at PSD by the exchange on Tuesdays. If you haven't been to TAP, get in there as soon as you can.

Hope some of this helps. I know when I was at Tripler, as bad as things got, all I had to do was walk around a bit to find folks who had it much worse.

Aloha
RH
CRC, finishing chemo Sep 08
http://rotorheadsblog.blogspot.com/
xctm1
Posts: 25
Joined: 2013-11-21 23:04:55

Re: MEB after Proctocolectomy/Permanent Ileostomy

Post by xctm1 »

I was given an MEB and placed on TDRL for UC back in '82. I got a 30% disability rating from the Navy and the VA. Permanently retired in '87. In 2004, I had a total colectomy resulting in a permanent ileostomy. The VA reviewed my situation and offered me a 60% rating. After a little research, I found that the applicable legal document is 38 CFR Book C. And after searching that document, I found that the term colostomy (which is what an ileostomy is, after all) is only mentioned ONCE and that is for code 7333, anal fissure. I appealed the VA decision based on the fact that I had a colostomy and therefore deserved a 100% rating. They agreed and I was awarded 100%. If you are receiving an MEB, make sure you know what code they are using to process you. Code 7323 is the code for colitis but don't expect to receive more than 60% unless you are well and truly debilitated or have a colostomy and appeal. Take care, Larry
Rotorhead
Posts: 385
Joined: 2008-08-27 23:45:48

Re: MEB after Proctocolectomy/Permanent Ileostomy

Post by Rotorhead »

Good gouge xctm1...will use it when the day comes to retire.
-RH
CRC, finishing chemo Sep 08
http://rotorheadsblog.blogspot.com/
NavySailor
Posts: 2
Joined: 2013-11-11 00:21:21

Re: MEB after Proctocolectomy/Permanent Ileostomy

Post by NavySailor »

Thanks to everyone that has replied so far! I really appreciate that you're willing to share your advice and personal experiences with the military and these diseases. Just for clarity--I had to have everything removed from rectum all the way up to even a small portion of my intestines leaving me with my permanent ileostomy.

Middle of December my PEBLO called me to let me know the Board in DC found me Unfit and would be forwarding my case to the VA for ratings. With the government shutdown last October they are even more backed up than usual so I've been told it could be up to 6 more months before we hear back. I'm taking advantage of Voc Rehab (chapter 31 benefits) while waiting so I can't complain too much.

Hope you all have been having a good start to 2014 :)
Nomadic
Posts: 20
Joined: 2018-10-26 18:16:43

Re: MEB after Proctocolectomy/Permanent Ileostomy

Post by Nomadic »

I am super tardy to this conversation but will add my two cents in case it benefits someone else. It is the medical review board's (perhaps unwritten) job to reduce the disability ratings whenever possible. But there are advocates, such as VA medical reviewers or the DAV, that can help retiring service personnel to know their rights, can review your records, if you want, and will fight with you. I have no first hand experiences since I'm only 2 weeks past surgery, but will be researching.
xctm1
Posts: 25
Joined: 2013-11-21 23:04:55

Re: MEB after Proctocolectomy/Permanent Ileostomy

Post by xctm1 »

navysailor, how about a status update? Hope all is well.
banbmn3022
Posts: 4
Joined: 2019-07-15 13:21:26

Re: MEB after Proctocolectomy/Permanent Ileostomy

Post by banbmn3022 »

It is possible to continue service after total proctocolectomy, I did it. Diagnosed UC in 2017, failed medical treatments and final surgery was February 2019. Permanent ileostomy with no restrictions, medications, or diet. Current Air Force pilot allowed to return to flight status. I do have restrictions but i do believe this is a data collecting. I was allowed to return November 2019 and have continued without a single issue.
Post Reply