Crohn's Disease Forum » Your Story » When life throws you curves, Learn to swerve!


03-24-2012, 08:00 AM   #1
T-Town-Boss
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When life throws you curves, Learn to swerve!

Hello Friends!

My name is Dwayne, I'm 19 and just beginning my life story.. I was diagnosed with Crohn's in my Ileum back in 2005, As a young child it really didn't take affect of my life I was a lucky one. Although my diagnosis process was long, drawn out and strenuous, quite honestly a nightmare I didn't let it bother me, like I said I was a lucky one, after being sent to 3 different specialist and hospitals, all over 100 miles from my home, I was sent to KU Med center. where I was diagnosed and told I was a week away from my death bed, Treating it quickly the doctors were able to get it under control within a few weeks of hospitalization with Prednisone and Asacol, As I said I was a young kid and quickly swept this behind me going back to a normal routine of life once i was out of the hospital. In all honesty not having the best immediate attention at home as far as watching my medications and what i ate after about a year i stopped taking medicine and watching my intake all together, which at the time was fine "so I thought" since i obviously was in remission with no signs of illness at all. A few tiny flares in between mainly a day or two of D and that was all I was doing great.

Fast Forward: This morning as I'm laying here in the hospital bed of St.Johns in Broken Arrow, waiting for the doctor to come and hopefully tell me i can return to normal diet and start to eat actually food again, I think to myself how lucky I have been in the past with this horrible condition. Although I've been struggling through a flare for the past 2 months of D and extreme stomach pain and gas I realize I'm truly lucky, many others have been faced with surgeries and extreme far worst then me, Yet I can't help but feel depressed on how the past 2 months have been, Within the last several months I've started my Asacol again and thought i was doing well, Then the past 2 months I had a turn for the worst and a flare started. It could of been caused by anything I just moved to Tulsa 9 months ago, started a new job, moved out on my own, bought a vehicle, facing the responsibilities of an American adult I've been through a lot of stress life and work related. also just the thought of my life coming together is really taking a toll on me, although I'm super excited about my life moving forward and actually becoming my own person and I'm thinking its moving in a great direction. It all builds together, so I'm sure that had something to do with the onset of the flare, although as we all know it could of been something as simple as something wrong i ate.
Two weeks ago I thought i was getting better, My primary care doctor had put me back on prednisone to try and kick the flare, my appetite had come back and i had started to see a major reduction in stomach pain and discomfort, I'm watching now what I eat and am trying to narrow "bad" food for me down so I know what i can and cannot have. and all of a sudden 3 days ago I started having extreme blood loss in my stools. this I call "Liquid blood" because quite frankly that's all it was.. feeling extremely weak not being able to stand, and dizzy to the point of passing out, I went to the ER, they drew some blood and took some test and wanted to send me home! That i knew would not have been a good decision so I decided to admit myself and see the doctor that came in the morning. This turns out a very good decision on my behalf. The doctor that came in the morning told me My Hemoglobin level was down from 12.5 to 7. obviously I had lost way to much blood for only being 130 pounds anywhere i knew didn't have much hah. The doc ordered a blood transfusion and told me I would be here that night as well. They also put me on a liquid diet the moment I rolled through the door, which was not good considering I had not ate anything put a handful of potato chips in the past 2 days to take meds. The doc also changed my steroid dose raised it by 20 mg and changed the type of steroid, He told me it was a stronger steroid and hopefully kick down the flare fast. I was happy so far, "besides the liquid diet". I've all ways been one to eat anything and anytime I want. Considering I was in remission nothing messed with my stomach except milk which i knew was a no no. so to fix that I drink Silk and it works great for me. anyway I've been in the hospital for 3 days and 2 nights, I had a CT scan which thank god showed nothing abnormal besides the flare up. and I've had a steady 4 units of blood pumped in me. My D has stopped which I'm guessing is from the Steroids and I'm Thankful because that means no blood loss. We've also setup an appointment with a GI since I just moved up here and obviously need one I can go to anytime I'm in need. I'm feeling 100 times better then when I came in the hospital and besides not getting but 5 hours of sleep in the last 3 nights I feel awesome! As said earlier, here I wait for the doc to come see me and hopefully change me to a full diet like he said, and hopefully today I can go home..

After that long drawn out story I know half people won't read because I am no way a good writer, if you did read it. Thanks, It feels good this being my first time writing to actually get everything out in the open on how I feel and what I'm going through personally lol. Feel free to post on what you've gone through or any "words of the wise" or tips you may have about this disease. I know it is different for everyone and it truly is a pain in the butt but I know we can all overcome any obstacle put in our way, after all, Its our Human nature to adapt.
03-24-2012, 01:42 PM   #2
Linnylou
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Join Date: Mar 2012
Hi T-Town,
I am new here too. Of course I read it, you are as old as my oldest child- interesting to hear how positive you have remained. YOu must have a strong fortitude and congrats too you for being such a driven young adult. Sounds as though you were a good listener and have knowledge beyond your numerical age.
Glass is either half full or half empty in lfe- both glasses are equal, it is the lenses that we view though that determine how we "see" things.
Keep your chin high and be proud of some of the difficult obstacles that you have already hurdled over. Any mother would be proud her child had attained independence and common sense at your age.
I certainly hope your recovery is a speedy, quick one-
Hugs
L
03-24-2012, 10:53 PM   #3
mickey
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Join Date: Dec 2011
Location: Illinois
What is wonderful is that at this age you have an understanding that you have been dealt a bad card, but you are looking for positive input to help you. Asking for help is always a good sign. Reap something from every situation and you will continue to move forward. Keep researching and trying things that may help you. Watch what you put into your body, so you remember "good/nutrious in, better health result"....try to get daily exercise (even if it is only walking for 20 min/day), keep that positive attitude. Search for your answers and you will find what works for you. Best wishes for great health!
03-25-2012, 04:28 AM   #4
T-Town-Boss
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Thanks for your reply guys!
And welcome to you as well L!

Great news, I'm out of the hospital!, everything returned to normal today and I was able to eat with no problems of running to the bathroom, hence no signs of blood loss and finally some energy back. so the doctor let me go of course with strict instructions for follow ups and more test but hey at least I can get back to my "normal" life hah.
I know I must keep my head up and keep heading in the right direction, sometimes its hard but I'm confident with the support from family and friends, and of course friends here at the the forums I can do it.
And Mickey I definitely will keep doing research and learning to keep this beast under control, the exercise is hard while I'm in the flare but I normally work out 2 or 3 nights a week whenever im going strong. only thing its that's been so long ago now I know all gain from it is gone lol. I agree help is out there its all in who you ask. I think the hardest part though is just the temptations to eat what I want hah, But one or another I'll find a way!

Once again Thanks for the positive reinforcement guys it truly helps!
03-25-2012, 08:15 AM   #5
Angrybird
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My Support Groups:
Hello there, just wanted to pop in and say to the forum! I am glad you are now heading home where you can get some rest and sleep. Definetly have a good nosy around here when you can as there will be a lot helpful info (and support) about things like diet, exercise and meds. I am sure your next appt will be a discussion on a long term treatment plan so at least you can start getting more informed on what may be suggested to you.

Wishing you well soon hun and keep us updated on how you are doing

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
03-25-2012, 11:30 AM   #6
T-Town-Boss
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Hey AB!

Thanks for the welcome, I will definitely keep snooping around here, I keep finding interesting stuff to read on the forums, your right there is a ton of information here! and I hope your right about the long term plan.i really would like to hear more long term plans from my doc. we'll see when that time comes I guess, one thing i really want to do is see if I can get off asacol and try something new, its just so expensive! lol but who knows we'll see. I'll keep updates going out if anything changes, once again Thanks for the warm welcome!
03-26-2012, 10:33 PM   #7
David
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Hey T-Town Welcome to our community, I'm pleased you found your way here and shared your story. And I really like your upbeat perspective. That's always nice to have around so I hope you join us regularly and spread your good vibes. I know I could use some at times

All my best to you bud.
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03-27-2012, 03:40 AM   #8
T-Town-Boss
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Hey David, Thanks for the welcome man!
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