Crohn's Disease Forum » Your Story » Coastie with Crohn's


08-19-2009, 09:43 PM   #1
bphenn
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Coastie with Crohn's

Hi, I am a new member here but found this site a great source of relief. I am 21 and have had Crohn's disease for 2.5 years now. I am in the Coast Guard and very proud of the fact that I can still have a job I love despite having crohn's.

When I first was diagnosed with crohn's it was a horror story. I was 19 and serving on one of our ship and I had severe abdominal pain. Our ship doc didn't know much about it, so I just got pain killers until we pulled into Puerto Rico. I was rushed to the emergency room at the VA hospital and the fun began. I lost 20lbs (i got down to 128lbs), the nurses and docs weren't too great with English, I was receiving food through my arm, and I was the youngest patient by 40 years. I spent a week in that hospital with terrible abdominal pain and consistently going to the bathroom.

I was then flown back to the U.S. to a Navy hospital and had a colonoscopy done and severe Crohn's disease in my illium region was the diagnosis. I was put on Cipro, Asacol, Entocort, and two other meds that I can't remember. That put my Crohn's into remission for a year.

After a year I had another flare up and my doc put me on 40mg of prednisone and that soothed the once again terrible gut wrenching pains. However I am on a flare up now and the prednisone isn't helping and I have tried allo pills and juice to no avail. I'm going to see my GI doc in two days and I really want to consider surgery because I'm getting married mid next year and I don't want Crohns to interfere at all. I am very happy that I can still make the Coast Guard my career, and I am even happier that I found this wonderful group of people on this forum.
08-19-2009, 11:39 PM   #2
shazamataz
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Welcome in!

I'm rather new here too and have found it useful for getting info, asking questions and basically knowing you are not alone.

I'm sure you will get things sorted for getting married. best advice I can give based on my experience so far is to be ASSERTIVE with the doctors. You are the best judge of what is going on in your own body.

shaz
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08-20-2009, 01:10 AM   #3
misscris
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I'm sorry to hear you're having a rough time of it, but glad to see you found us.

I'm still fairly new to this disease and trying to figure it out and sort everything out, but I have had a resection. Are you being told you will/might have to have surgery or are you just thinking surgery will help you to be in remission?
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08-20-2009, 02:31 AM   #4
Agent X20
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Welcome to the forum. Hope you continue to work as a Coast Guard for as long as you want and good luck with the wedding plans
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08-20-2009, 07:01 PM   #5
bphenn
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Thank you all for the welcome. I really want to have surgery because that is one of the few acceptable treatment options for me to stay in the Coast Guard. I have read all sorts of different treatments but i'm not allowed to have infusions so that pretty much limits my options. Being informed about different treatment options and being assertive is the best advice I could have ever received so thank you again. I really look forward to posting on this forum often and hopefully I can add my .02 cents somewhere
08-20-2009, 07:33 PM   #6
Lisa5326
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Welcome bphenn! I LOVE that you put 2 significant figures on 'two cents'! Awesome, but I'm a chemistry nerd haha!
08-22-2009, 09:29 AM   #7
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Welcome to the forum!!! I hope whatever route you decide to take, helps you to feel better. I know many on here have had to quit their job or have lost their job due to their CD. I hope it works for you so that you can keep yours
08-22-2009, 10:30 PM   #8
bphenn
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Oh their is no way I'm going to lose my job over this. The silver lining with Crohn's and the CG is that our medical manual only has a small little paragraph that says no prolonged use of steroids or use of I.V. infusions. That is why I am adamant about surgery. Plus my command is very supportive of me and wants me to get better. It's nice when your bosses like you On another/embarrassing note I have been noticing mucous when I have bowel movements. This has never happened to me and I've only had CD for 3 years now. I looked this up online and the only thing I could possibly think of is an ulcer or maybe a bowel obstruction. It hurts to go to the bathroom and I don't exactly have diarrhea but it's extremely loose. Any words of comfort would be appreciated so I can worry less and I can better prepare for my appointment on Monday. Thanks!
08-22-2009, 10:46 PM   #9
bphenn
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Nevermind about the mucous, I found another thread about it. It still kind of freaked me out the first time. Only two days till docs appt. My first appointment was canceled due to an emergency procedure, I told them to be ready for me next Thank God I have a supportive fiancee otherwise I would probably be crawling to the doc.
08-23-2009, 07:57 PM   #10
My Butt Hurts
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Hey Bphenn - awesome career choice!
Good luck at your appointment tomorrow, let us know how it goes.
Welcome to the forum!
08-24-2009, 09:00 PM   #11
bphenn
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Well just got back from the doc. So we decided that I'm going to go on Prednisone with 40mg per day and then get some blood and poop work done just to make sure I don't have any infections. I'm also going to call up a surgeon just to kind of get my name out there and to see what he says. Then after a followup appointment we're going to go to immunosuppressant drugs which I'm kind of scared of 6MP. I don't like prednisone too much At least I can eat normal food now kind of so that's a plus!

Last edited by bphenn; 08-24-2009 at 09:04 PM.
08-24-2009, 09:02 PM   #12
jamie2462
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whooo 40mg....that should be just enough to keep you up at night and just shy of raging mood swings. :P O fun...but at least you should improve. keep it up. Hoping you get out of this flare and on to "smooth sailing". Sorry i'm tired...thats all i got. :P
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08-25-2009, 02:09 AM   #13
Agent X20
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bphenn said:
It's nice when your bosses like you
That's 50% of the battle. Bad bosses = stress = bad for chrohns

You'll find a lot of us are on immuno-suppressants... everyone's different, but some of us (including me) seem to get a lot better on them with no side effects (but I don't want to tempt fate, so I won't say any more on that). You can always come off them if they don't work, and it may be the best thing that's ever happened to you
08-25-2009, 03:54 AM   #14
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Yeah, wouldnt be too frightened of the immunosuppressants mate, they are not as scary as they sound, and boy i am a nurse and even i freaked myself out when it was mentioned, but best thing i ever did. Slowed down the flare up times, and lessened the times i needed prednisolone. Wouldnt jump for surgery just yet, leave it for the dire straits.....

Hope all goes well mister
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08-26-2009, 04:22 AM   #15
Peggy
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Hi Im new as well, Crohns is no fun, good to here you can still do your job, good luck with the wedding plans, and seeing the doctor, Hope you get what you want. Peggy
08-26-2009, 04:09 PM   #16
bphenn
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Well blood and poop test are in for testing. My GI doc just wanted to completely rule out I don't have parasites or some sort of food poisoning, but I think we both know it's my Crohn's. By the way, dog poop tests are easier to complete than human ones...
08-27-2009, 03:55 AM   #17
gibby
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Good to know.....never done a dog poop one before.....
08-31-2009, 07:04 PM   #18
bphenn
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Bit of a rant: Well the pred. seems to be doing its job quite well. My abdominal pain is substantially less and I can eat almost normal food BUT... (always a but...), this stuff is really messing with me. I keep getting all "moody" which isn't too much fun and . I also have some pretty good moon face going on but at least I am gaining some weight back even if it is little by little. For some reason too I keep having weird dreams and can't sleep too well. My dreams aren't even in English!!! They're either German or Russian and I don't even know Russian. That part is kind of cool though I think. My joint aches are starting to happen too, but I start to taper off pred. starting tomorrow since it is doing its job. I hope this dose of prednisone gave Crohn's the K.O. for a bit... or forever. Well end of my little rant. Just figured I'd add it to my previous post and I go see my G.I. doc in a week and a half. Going down to 30mg tomorrow!!!
08-31-2009, 11:40 PM   #19
shazamataz
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Hiya,

We are on a similar path I think. I am recently down from 40 to 30 mg as well and, if it helops, I have found the side effects have lessened quite a bit. I wasn't moody, but actually quite manic. Was kinda fun in some ways but also exhausting as it interferes with sleep.

I am sleeping better but still not long enough. I am fascinated by your dreaming in other languages though! You may not believe in this stuff but perhaps it is from a past life?

Good to hear your insides are feeling better - mine too

OOh, I just had a thought. I was scheduled to drop from 40 to 30 and 20 and ten with three weeks on each dose.

My initial drop was 60 to 40 and that completely threw me for a loop - felt REALLY weird for several days. After reading a few posts on here, I decided to go 40 -35-30-25 and so on, changing every week and a half instead of every 3. When I went 35-30 I didn;t notice anything at all.

Good luck and keep us posted on your interesting dream states!

Shaz
09-09-2009, 08:55 PM   #20
bphenn
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Well another doc appointment in the books and I get to start 6MP. I'm kind of nervous about this but I guess it is monitored pretty well and I will be taking 100mg daily. The thought of taking pills forever is daunting in my head but hey, hopefully this works for a long long time.
09-09-2009, 11:03 PM   #21
shazamataz
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Snap! My doc wants to start me on that as well and I have been majorly freaking - he's given me 2 weeks to decide.

Will be interested to know how you are getting on. How is the pred doing with you?

shaz
07-04-2015, 04:10 PM   #22
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Hello,
My daughter was diagnosed with Crohn's when she was 10 years old. She is now 20 and has married a man who also has Crohn's and is 25. He wanted to be in the Army and was rejected for having Crohn's. Does anyone know if you can get into the Coast Guard already knowing you have Crohn's?

About 6MP. My daughter was on it for years. Have to be monitored for liver counts while on it. May have to have one in the morning and one at night so as to not overwhelm the liver. All heck broke loose when she developed Epstein Barr virus and white cells were way up and liver was compromised. The dr stopped mercaptopurine until she recovered and she is doing fine on Pentasa. Never had a flare since her diagnosis when she was 10 years old.

Her husband had a lot of flares until he recently started up the 6MP. Both are doing very well. What do you think how long is too long to be on a steroid? They are neither one taking it now, but have before. You shouldn't worry about taking 6MP as long as you are monitored well. It works.
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