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My Crohn's Story and the Navy

Hi everyone, Was just browsing the web in search of other cases of people who recently finish a Physical Evaluation Board (PEB) for crohn's in hopes to see what I would have to look forward to when my case is reviewed soon. Then I came across this website and decided to tell my story, as I haven't really talked to many people since I've been diagnosed.

First, My name is Harold and I joined the Navy back in OCT 2000 and went through all the Nuclear Training and was assigned to my first Submarine in 2FEB 2003.
Everything was going great, I was qualifying everything when during an underway period, I felt really bad. Bad cramps and vomited. My first HMC was one of those corpsman you don't really complain a lot to. I mean he had 20 tattoo's, was qualified every warfare they had at the time and just had that don't bother me unless your arm is falling off and even then only if you couldn't stitch it back on yourself. needless to say he made an entry at least that's in my record. after a Day I started to feel better and nothing came of it again.
Then 2 years later in about March 05, I had a terrible pain in my abdomen as if my stomach was pushing and my food was going no where. I eventually vomited and again nothing came of it. This time it lasted about 2 or 3 days before finally was feeling better. Then I started this big weight gain. Now everyone and everything that I read talks about CD and weight loss, But I have never had that problem, always gain weight for no reason and hell to get it off.
The Following year we had a new corpsman HM3 who was really good. I had to go to the ER at Tripler Army hospital in Hawaii, They poked me gave me a GI cocktail and sent me home. by this time I was in lots of pain, still not the most pain I had but still not diagnosed with anything. 4 days later felt better.

APR 2007 I began hating life, always had bowel discomfort and abdominal pain which I just began to fell was just normal. I finally got seen by a doctor in Guam who ran some tests and well said my gallbladder wasn't functioning properly. So that got removed. JUL07.. Yay no gallbladder and things kind of cleared up and felt pretty good for about a month or 2.
Then same thing and only getting worse, plus more bloating, constant belching and sighing, plus more weight gain. Kept complaining to the HMCS and well it fell on deaf ears, I even begged for a colonoscopy. I mean who begs for that??
between 2008-2009 I had 5 episodes and I just didn't say anything anymore, nothing ever happened and I just began to think I would just have to live like this forever and became very depressed. which affected my work ethic and job performance. eventually I got removed from my ship because I lost my mind.
in 2010 I regained my composer and got placed back on a new submarine and I immediately began to work extremely hard, I fought to get my weight down working out 5 days a week and eating very little. eventually I went from 28% body fat to 18% body fat. and kept working on making sure I stayed in shape and within standards. I managed to find a way to ignore my pain and problem to make it happen. In APR 2011 I finally received my official orders to the submarine I had been busting my A** on for the past year,then tragedy strikes.
On, May 20th, 2011 during my morning PT something bad hurt inside. I felt it when it happened and stopped till it finally eased and continued my workout that day. That whole week I wasn't feeling good and wasn't eating much, but I just kept going.
I showered and returned to work as normal. Had a quick sandwich and a drink before starting the workday as the Enginneer scheduled a performance Monitor for one of my guys, for me to do that morning and I just found out about it. I had argued with the EWS that morning cause I wanted to do it later as I was still not feeling well, but in the end and him yelling at me and I talked to the ENG, I gave in and went to montior New MM2 (who happened to make MM1 later that day). As we started I became very very ill. It started with extreme nausea and then followed with Extreme pain in my lower right quadrant. I stayed with him to observe the sample and was fighting through the pain to see it to the end. This sample normally takes 40-50 minutes. When we got back to the Lab the pain became so bad I started to punch a locker when my MM2 said I got this you need to get help you might have a serious problem. Which I took his advice, even though I hate to not finish things, since he did everything pretty much perfect. I left and walked from the Ship (which was in Drydock) to the Barge to find HMC Hicks, after I got to the barge I didn't find him nor anyone, I remembered Quarters on the Pier which at the time was being done in a shop, which happened to be on the other side of the drydock opposite the Barge. So when I get there the CO is giving a speech when I signaled to the Duty Chief I needed help and if HMC was in. Turns out HMC was flying in from a conference today. but he got a duty driver to take me to the ER at tripler. After there he tried to get me a wheelchair but due to the renovation going on it was easier just to walk around and deal with the pain than to get up every few seconds to go over a bump. eventually, I got settled in and given lots of pain meds and a CT scan, which the Doctor came back and said "Your CT scan came back BAD!" that's how I found out my intestines perforated in 2 spots.
After emergency surgery that came about an hour after they told me my problem, I was diagnosed with Crohn's Disease on my 30th birthday....... How's that for a great birthday. But the cool thing was my CO and DOC fought to allow me to at least stay on the Sub while she was in the shipyard so I could finish what I started. But eventually, after about 6 months following the surgery and no medication, my symptoms returned including my weight gain. I was put on Endcort then prednisone, and then finally on HUMIRA, Humira is what finally got my symptoms in check and I still have pain and flare-ups, much smaller than before plus, my recent colonoscopy showed 3 small ulcers and the biopsies show active crohn's.
I have lost all my motivation and after 4 colonoscopies since my surgery. and being put on HUMIRA which make me non-deployable, I'm tired of fighting. I have been trying hard to get my weight back down but nothing. So right now I'm waiting to send my stuff up to DC and get my results back so that I can move back home and start my life again. I have a place to stay and just want to get out of this place I'm at now where I'm not doing what I love to do. Oh, on top of all that my wife just left me when she realized that I was not going to stay in Hawaii.
 

afidz

Super Moderator
First of all, Thank you for protecting my freedom!
I'm sorry that you have been through so much, I am not up to date with military lingo, but fro what I could understand, you are a very strong person, and you loyalty to serving our country under such poor circumstances is very admirable. Its hard for a civilian to go about everyday life, let alone an active person in the military. Where is home to you?
 
Afidz, thanks for taking the time to read my mess, but home would be with my grandparents in Eufaula, Alabama. If it wasn't for this weight gain problem I'd try to stay in and finish my 20 yrs. but with being on humira and now having a lot of joint pain, trying to workout so I can be within navy standards just isn't working out for me anymore. I can work past the pain, as I did it before, but this is too much and I'm terribly afraid to perforate my intestines again.
 

afidz

Super Moderator
its understandable, you did the best you possibly could for your country, no one can fault you for that. Are you seeing anyone for your joint pain?
 
My GI doctor gave me a prescription for tramadol ( ultram) which if I take more than just the one pill makes me sick, but one pill doesn't completely kill the pain but makes it bearable. Normally not too much of a problem once I get moving but when I stop or sit for a while and try to start moving again, my ankles are so stiff and going up and down my stairs just hurts like hell, but I just deal with it. He doesn't want to give me anything stronger because it will cause me to become constipated. See, they took my illuem out cause that's where my crohns was.( 6cm small intestines and 3cm of my large.) this causes me to have bile acid diarrhea pretty much all the time, for which I drink questran to stop that and that has been a god send since he prescribed me that, but I have to balance it out. Recently I had a trip to the ER because of severe pain but I didnt have a bowel movement for 3 days. Extremely painful, after the CT came back neg for inflammation I got some pills to help me go and well now I'm much better but it's a pain trying to manage this side effect of the surgery. I usually go about 6 to 8 times a day. On a good day 3 or 4. Mostly small diarrhea squirts, but the first 2 of the day nice soft.... Ok I think this is getting too descriptive.... :ytongue:

Edited: stupid auto correct!
 

afidz

Super Moderator
My dad is the same way with "D". His resection will cause him to have diarrhea for the rest of his life. I hope you start feeling better soon
 
I'll be drinking questran for the rest of my life and not sure when I'll be able to come off humira. Been on humira since about May last year. My doctor has no plans on stopping my treatment anytime soon.
 
HaroldG, you sound like you could be a Seal/Recon with your "intestinal fortitude" :)

Sorry you have had such a tough road. Tripler is a good facility, even if we jokingly refer to it as "Crippler". We were stationed at K-Bay, lived in Temple Valley back in the late 80's.

I, too, am a Crohnie that does not have weight loss as a symptom. In fact, quite the opposite. I have some other stuff that contributes, but if one more person says "I thought people with Crohn's were skinny" I may just snap.

Although I am married to a Marine, and have a child each in the Marines, Air Force, and Navy, I am only familiar with med board procedures for the jarheads and zoomies. I know my sailor sometimes rides the bike for PT and PT tests, don't know if that is a less painful option for you or not.

I hope the board gives you a high enough % so you can get the care you need after getting out.

Never worry about being too descriptive here. I am pretty sure it's not possible ;-) I hope your illness doesn't interfere with your ability to enjoy eating manapua.

It really sucks that your wife bailed when you need support. I am truly sorry to hear it. You have a whole bunch of friends all over the world who completely understand what you are going through, and we are here for you when you need us.
 
I'm SO sorry. I know what it's like to deal with military "docs." If you look up my story, you can see what they did to me at MAMC at JBLM.

I'm sorry your wife left you after all you have been through. Things will get better though. Sometimes you don't see something for the blessing it is until some time has passed. Hugs to you!
 
Well I wanted to kind of tell the story more following my surgery it was late last night when I started and currently I'm still stationed in Hawaii at the shipyard.

Like I talked about before I had told my HMC "DOC" that I wanted to stay until the ship left the shipyard, So after my surgery I was in the hospital for 5 days followed by 14 days convalescent leave I went right back to work. Now the first few days was really hard, mainly my scar was still healing and it was kind of painful going up and down on the office barge (we moved all the computers, and all our paperwork off the Submarine while in the dry dock to a Barge). My DOC refused to let me go down to the Submarine now matter how much I protested and (I hope he doesn't see this) I did so anyway once or twice..... At least for the first two months after my surgery. I had a colonoscopy about 6 weeks after and there was one staple still inside, but everything looked great and I felt great! I was regular and I wasn't bloated, didn't have a hint of abdominal pain and life was wonderful again and I wasn't taking any medication.

Then Dec 2011 came, and everything started to go down south. First, I started to bloat up really bad and belch a lot, then started to gain weight like mad again. (I had already started my 5day/week workout routine again after doc finally stopped getting on me about working out). So I called my doc and he thought since my ileum was gone, bacteria might have started to travel backup my system and gave me some anti-biotic which helped with the bloating and feeling better till the pain set in. I mean some pain at random times and the Bile Acid Diarrhea. I have never pooped myself this sore in my life. I don't know why all this happened at once but man it's been hell.

Now I got a colonoscopy in FEB 2012, this showed one small ulcer which this guy who did the scope attributed to just using too much asprin or as the military put it vitamin "M" (Motrin). I had to wait for the biopsies to come back, but I talked to my GI doc and told him that I don't use asprin or motrin or anything like that, if anything it's Tylenol and very rarely. so the biopsies came back inconclusive and my GI doc started me on endcort because I was having symptoms.
So after starting those my pain level still was going up, to the point I had to make sure that I had used the Head before I left work or before I went to work because I would be in hella pain trying to hold it walking into work from the parking lot. One time I didn't think I was going to make it. I really had to slow walk to there because I was in so much pain. I was crying on the toilet when I finally got there. (I refused to shit myself)

So eventually I couldn't even do basic stuff on the ship or put a locker back and secure it and my HMC sent me to the ER. they did a CT scan and didn't see any inflammation..... (I'm really beginning not to trust that CT scanner though it did save my life that one time).
Then the next day my body clinched up tight and I was in worse pain that wouldn't let go and called an ambulance to take me to tripler. I my SGPT levels were abnormally high and now have since been elevated for the longest time. so they did a ultrasound to check my bile duct for problems (note I don't have a gallbladder) My HMC was not very pleased with them and thought they were retarded and really wanted them to put me on something better than what I was taking.
So eventually I talked to my GI doc about the whole thing and he put me on prednisone which still didn't help the pain but I gave it a little time but just kept getting worse and had another colonoscopy in APR 2012, this one looked worse than the other one and this time the biopsies came back definitive active crohn's disease.

So then in May I got pulled off the ship because I just couldn't handled the pain and trying to work, I tried like hell and they knew I was trying and I did a great job, they told me all the time and my Eval and award shows it. This is one I am proud of. I was started on Humira and ever since have been on this medication. I didn't see results till a little after a month when everything started to slow down. I was finally starting to have a normal feeling but not quite all the way. I still have some pain but it wasn't all the time and I could actually do some work again, except for the fact when I start a project, I have to run to the Head every 10mins. So very annoying. Eventually though I would stop and could finish but this happens everyday. If I don't do anything physical, well I can manage but eventually I will have to go 5-6 times avg./day.
So sometime last fall I started to slowly have ankle problems till November when I really started to notice a lot of my joints were aching, then a flare up in novemeber drove me crazy and I had a colonoscopy already scheduled in DEC 2012. it showed 3 ulcers, and some tan tissue. the biopsies showed definitive active crohn's. so that leads me to recent event. constipation is definitely an enemy for me as well. didn't go for a few days and well I had this very very bad pain in a one spot that if I touch or even slightly bumped it cause terrible pain. got that problem corrected and my pain is gone, (just that local pain spot I still have abdominal pain but only a 1 or 2 at most normally. sometimes if I really have to go it's about a 4 or 5.
 
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