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In the Navy & playing the waiting game

Hi everyone. My search for answers led me to this forum which is a wealth of information and great comfort. My hope is by sharing my story, someone with a similar experience will be able to offer me some guidance.

First off I'm in the US Navy and its been nearly a year since I was commissioned. I am stationed at a shore command due to the nature of my job, but am a deployable element. Due to the qualification process, I have to be able to deploy and stand night watches <----where all my drama basically began.

My shift works two twelve hour days back to back, then two midnight shifts back to back. 8am-8pm, 8pm-8am. With turnover and training, we are there much longer than twelve hours, so it's closer to 14-16 hour days depending on what we are doing.

I began my shift work in November and during my very first midnight watch in November I began throwing up. Thought it was a bit of flu or too much caffiene, so they sent me home. About this time of the month I began to become exhausted. I mean, falling asleep driving to work, unable to workout, can't muster the energy to go grocery shopping kind of tired. I stopped going out with friends, doing anything basically. I continued on with my shift work, fighting nausea in waves everytime the night shift rolled around. My mother, an army vet, told me she used to battle the nausea late at night as well and it would get better.

It did get better, through December and into January I found a good system that worked for me and was more functional at work. Not at home though. I would come home and collapse and during my days off they gave us after coming off these late night shifts I would literally remain in bed for almost 3 days.

After a brief leave period for my sister's wedding end of January I resumed the night watch, which was when things went haywire. My first night watch I began to have a deep burning/throbbing pain in my left side. Began to worry since I have a history of ovarian cysts and was shortly after let go to the ER. They performed no tests, referred me to gyno and gave me pills for a UTI. The next day, extreme nausea. Woke up in the middle of the night and it felt like my guts were literally boiling. Rolling bubbles, I can't describe it, like a caldron was being stoked in my stomach. Finally went away at 6am and I could sleep. Mustered the strength for a run the following evening and a few hours later was back in the ER in extreme pain again on the left side. They referred me to gyno and gave me roxicet.

Went to gyno who performed an ultrasound. Totally normal. Quickie pelvic revealed nothing abnormal. They told me I never had a UTI and to quit taking those meds. After a quick questionaire where I revealed my wrestling with constipation and noticing quite a bit of mucus in my stool, she decided I needed to see Gastro. The earliest available appointment was a month from then.

In between that day and the following weeks, the pain meds complicated what became some pretty bad constipation and I quick taking them because they were messing me up. Went in and out of the ER 4 more times alternating between extreme pain and extreme nausea. Never ran a fever once. No urine or blood tests indicated anything abnormal (beyond whatever the ER actually tests for). My stomach is haywire at this point, contracting and burning when empty, nausea and bubbling when it has anything in it.

During this time my primary care doctor sent me off for my first real test: an abdominal xray. He tells me what it reveals he has never seen in his 30 year medical career. My colon and is nearly devoid of all fecal matter but is literally stretched to it's max with gas. Tells me to avoid fat and milk til I see gastro and to take anti gas meds til we figure out what is causing the crazy gas buildup there. We all breathe a sigh of relief as cutting out those foods does help ease my pain.

Two weeks later I see the doc again. I go over my symptoms again and add in at this point I am weak, exhausted beyond belief and losing my hair for a couple months at this point. She asks to test my thyroid. My results come back and I find out I have hypothyroidism. So I began taking medication for that with the hopes my energy will improve and my hair will grow back.

GI appointment rolls around where I am due for an endoscopy/colonoscopy. I tell the doc about the new diagnosis and he seemed very optimistic that the thyroid is causing all the ill. Tells me since I'm on the table he'll take a look, but expects me to be a ok from top to bottom.

When I wake up, I am handed a print out and told to modify my diet to high fiber, no nuts, seeds, alcohol or milk products and absolutely no smoking. Later in the evening once the drugs have worn off I began to google what my findings were.

I have Grade 1 esophagitis (basically an inflammed esophagus from acid bubbling up from my stomach). I had been biopsied in 4 places due to "a mild erythema of the stomach". Lookup revealed that meant my stomach was inflammed. I expected them to find an ulcer in there so I was surprised they didn't see one. Next page I see my colon checks out normal but they found an ulcer in the terminal ileum of "uncertain clinincal significance", which they also biopsied. When I googled "ulcer terminal ileum" my world literally rocked. Everything comes up Crohn's. In the days since as I have continued to search and read up on IBD my fear builds. Does anything else caused ulcers there???? I have gone through hundreds of medical articles and found nothing but Crohn's. I know ulcers in that particular spot is one of the big ways they can distinguish it from UC.

I am at a loss. Until 4 months ago, I was an energetic, bubbly 26 year old proudly serving her country. Now I could potentially be facing a lifelong disease and a medical discharge. I should have the lab results back in 3-6 days and am patiently waiting. My symptoms basically remain although the pain is a little less. If anyone has had a similiar situation I would love to hear some advice. Particularily from anyone in the military. Thanks for reading guys. I know I'm not a doctor and I'm not trying to diagnose myself, but can't help but feel that tug in your gut when you know something is wrong.
 

xJillx

Your Story Forum Monitor
First off, thank you for what you do for our country!

Unfortunately, I don't think there is too much else that causes inflammation and ulceration of the TI. I asked my doctor the same thing (my Crohn's is in the TI and rectum), hoping I had something less serious, but no luck. Instead she just told me that the TI is the most commonly affected area for those with Crohns. But, remember, I am no doctor! Have you discussed your results with your doctor? Did he suggest Crohns?

I hope you get the answers you seek soon. And, remember, if it is Crohns, there are many treatment options available (not like years ago). Many people achieve remission for many years with the right medication. Please keep us posted and I wish you luck!
 
Hello Nina and glad you found your way here. It's been a godsend for me. I'm a bit like you in that I'm currently undiagnosed and waiting for test results, but was struck by the similarities in our 'predicaments'.
My symptoms started too with the onset of what I thought was a stomach upset: vomiting, fatigue, no fever but pain in my lower stomach and pelvic area. Then I developed the symptoms of a UTI. Had several visits to my GPs surgery where the first thing I was told was that it might be a grumbling appendix. First sample test showed no UTI but they gave me antibiotics for the appendix. Symptoms continued and subsequesnt sample tests sometimes showed a UTI and sometimes not.
Eventually my now favourite GP sent me for an ultrasound as I too had an ovarian cyst, tho that was 25 years ago. This showed narrowing in the small bowel and they sent me for a barium meal which is what I'm waiting for results for but the hospital said the likely cause is Crohn's.
Cutting caffeine has eased the bladder problems a bit, but a lot of foods cause me pain which is now in the lower right of my stomach as well as the pelvis and my stomach gurgles and moans all the time!
I can't offer much advice, but I can really sympathise with getting your head round the implications of having the disease and wanting to know for sure it that's what it really is.
Let us know what happens about your test results.
Helen x
 
Hi and Welcome
You have come to the right place :) I had some of the same things that you are explaining. I am so tired all the time I can't stand it, therefore the fact you have to stay up as much as you do makes my heart go out for you. My Chrons come on really fast just liked you explained. I hope your answers come quickly.
 
Hi Nina :) Welcome to the forum

I don't have anything to offer as far as advice on being in the military with Crohn's disease. All my knowledge indicates that it would lead to a discharge if it comes back with Crohn's. But, I have no experience with the military, so I am not sure if there are any other ways of getting around that.

I am glad you are feeling better and the treatment you've received thus far has been speedy and efficient. You are very fortunate! :)

I know the idea of having Crohn's disease is not a fun one, especially when you are told "maybe" and then have to wait to find out whether or not your life is going to change drastically if it is a definite thing. Whatever your plight may be, just know there is a wealth of knowledge of people on here that will help get through the process a bit easier.

It's tough trying to figure out how to live life differently once you get that diagnosis, but it is by no means the end of the world. :) I agree with Jill--there are many treatments out there.

Hang in there and keep us informed!
 
Hi welcome :)

I am not sure if having an ulcer in the area is a definite for crohns. I hope that the results come back showing no crohns though for you. Keep us updated and I hope that everything goes well for you.
 
Thanks for the feedback everyone. I really appreciate it. I'm remaining hopeful and praying for good news when my labs return. Again, thank you for your responses and your encouragement, this is a wonderful online community.
 

ameslouise

Moderator
Hi Nina and welcome!

The news that you may have Crohn's can really hit you like a bag of bricks. For many of us, it has taken months if not years to mentally come to grips with the diagnosis.

And if your disease keeps you out of your military career, that is a double whammy. You may feel like someone pulled the rug out on you. So - don't kick yourself if you are having trouble accepting everything - that's totally normal!

The good news is that there are tons of treatments out there and with the right one and proper diet and care, you can lead a normal life. Sometimes it takes a while to find the right mix.

Good luck and please keep us posted on your progress!

- Amy
 
Hi Nina,
Thanks for sharing your story. So tricky but hopfully you will find out what is going on. Then you can start the right treatment.

I hope it works out, but if it's Crohn's - does that mean an automatic discharge?
 
This morning it was going on 11 days since my colon/endoscopy and still not test results. I went to see our medical Chief to see if he could access them in the system since they hadn't been mailed to me yet. He could, and handed them to me saying "looks like they didn't find anything". I'm inclined to agree with him based on what I read and could find through research but still haven't spoken to a doctor. I thought I'd post them on here in case someone out here has had a similiar reading and can explain it to me.

On Final Diagnosis:
A) Duodenum biopsy: Small bowel mucosa with no specific histopathology
B) Stomach biopsy: Reactive gastropathy, no helicobacter pylori like organisms identified on HE or special stain.
C) Terminal Ileum biopsy: Small bowel mucosa with mucosal lymphoid hyperplasia. No ulceration or increased intraepithelial lymphocytes noted.

Now here is where I am confused:
1.) What is mucosal lymphoid hyperplasia? From what I read it's an overproduction of cells, which doesn't seem normal to me.
2.) How did my labs come back without an ulcer but I can see it imaged clear as day from my print out of my colonoscopy.

I don't feel relieved because as I sit here I have throbbing/stabbing pain in my left side that never goes away. My nausea is better this week as is my energy, but I am constipated beyond belief (its been 4 days since my last BM) and I still have no answers. And because my medical is military, trying to make more appointments takes months. So I have no answers, no mitigation and nothing to make the pain better. Any suggestions on where to go from here?
 
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ameslouise

Moderator
Hi Nina - I'm afraid I can't help you decipher the results, but I am sure someone else can translate them for you.

Hope you can get an appt soon to discuss directly with the doc.

- Amy
 
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