Crohn's Disease Forum » Your Story » New Member Here


03-25-2018, 12:58 PM   #1
jacinthebox
 
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Well hello, my name is jess, from Grand Rapids Michigan, I was diagnosed when I was 11, I was on medications for most of my childhood until I graduated and unfortunately just kept putting off getting into an adult GI doctor and so pretty much just quit all my medications once I ran out of refills. For a couple years I was absolutely fine, started a job at a fast food chain, never missed a day of work for three years, always full of energy and got suckered into overtime, got a promotion and have been working my butt off.

Now I'm 21 and I'm not nearly as bad as I was when I was first diagnosed but it's getting to a point where I can't ignore my body and I have to start taking responsibility for my health. So these days I'm not exactly getting constant stomach pains or vomiting my meals. I just simply am not very hungry. I eat once or twice a day in very small portions otherwise I bloat up and become uncomfortable. In the past month I've also started getting some pretty annoying joint and such pain. Usually It's either in my hands or hips/legs and am actually in the process of figuring that out.

So if you're near the area, have any kind of advise for dealing with missed work and emotional well being throughout this, or just a common story then I'd love to hear from you.
03-25-2018, 01:30 PM   #2
ronroush7
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Welcome. I am not near the area. Are you back on medication? You might consider going to see a rheumatologist for the pain you are describing. You said that you eat once or twice a day in small portions. Shortly after my resection, my GI recommended eating smaller meals more often. Just a memory that was brought up. Wishing you the best.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-25-2018, 05:48 PM   #3
jacinthebox
 
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Thank you for the advise and concern. I am actually having a cat scan done tomorrow for the leg/hip pain and I suppose they intend on getting a good picture of what's going on in my stomach as well. And I had my resection surgery about two years after I was diagnosed and they either never told me this or I simply don't remember. Anyways, I'm not on any medications atm and haven't been for three years. However at my last appointment with my primary he did put in a referral with a GI so I should be getting a call from him pretty soon and I'm fairly certain he'll want me on some of the basics I was on at the least. Previous meds I've been on before are; pentasa, prednisone, mercaptopurine, folic acid, remicade, and humira. Hopefully I won't need the majority of those (fingers crossed).
03-25-2018, 08:45 PM   #4
ronroush7
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Hoping the best.
03-25-2018, 11:24 PM   #5
cmack
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Welcome Jess,

You have my support, being sick is no fun. At least it sounds like answers are on the way fairly quickly. I hope you can get your disease under control as soon as possible. You are doing the right things in my opinion. I would definitely choose to take meds over surgery if I was given the choice. Best of luck to you!
03-29-2018, 11:07 PM   #6
Lynda Lynda
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Jess, Yes, I agree, it sounds as though you are heading in the right direction. Thanks for sharing with us.
06-21-2018, 03:51 AM   #7
jacinthebox
 
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Thanks so much you guys for all the support i also hope everyone is doing well and staying positive!
06-21-2018, 08:53 AM   #8
scottsma
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Have you had the results of your scan / tests yet ?
07-03-2018, 09:20 PM   #9
adamlevine
 
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Welcome
07-04-2018, 10:12 AM   #10
scottsma
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And welcome to you too Adam
07-06-2018, 07:39 AM   #11
crohns35
 
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Well hello, my name is jess, from Grand Rapids Michigan, I was diagnosed when I was 11, I was on medications for most of my childhood until I graduated and unfortunately just kept putting off getting into an adult GI doctor and so pretty much just quit all my medications once I ran out of refills. For a couple years I was absolutely fine, started a job at a fast food chain, never missed a day of work for three years, always full of energy and got suckered into overtime, got a promotion and have been working my butt off.

Now I'm 21 and I'm not nearly as bad as I was when I was first diagnosed but it's getting to a point where I can't ignore my body and I have to start taking responsibility for my health. So these days I'm not exactly getting constant stomach pains or vomiting my meals. I just simply am not very hungry. I eat once or twice a day in very small portions otherwise I bloat up and become uncomfortable. In the past month I've also started getting some pretty annoying joint and such pain. Usually It's either in my hands or hips/legs and am actually in the process of figuring that out.

So if you're near the area, have any kind of advise for dealing with missed work and emotional well being throughout this, or just a common story then I'd love to hear from you.
My name is Tim I go by Crohns35 because when I signed up that's how many years I have had this disease.The reason you don't eat much or feel hungry is everything moves through your body slowly due to scaring in a spot somewhere in your intestines. Mine was where the small meets the large colon which is pretty common. The scaring causes it to narrow basically making it like a hourglass. I can't guarantee this obviously but I have had my scaring or narrowing removed 4 times now. The joint pain is every bit part of Crohns as the stomach pain is. I have had both of my hips replaced and now my shoulder is going out. You need to see a gastroenterologist asap to get back to taking meds.they are very good these days and I have been in remission for 4 years because of Cimzia. Do not wait or ignore what you are going through it will just make things harder once you do. I did the same thing at your age. Good luck to you
Tim

07-06-2018, 09:44 AM   #12
cmack
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Hi Tim. I'm glad you joined us.
07-06-2018, 03:27 PM   #13
Jasonaldean
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Welcome from New York.
08-09-2018, 08:37 PM   #14
jacinthebox
 
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UPDATE

So Im back.. And thanks everyone for the welcome and kind comments! Unfortunately positive thinking did not go as well as I would have liked and I did end up having surgery in June; ileocolic resection with abscess drainage. My recovery time went fairly smooth. Incision healed up very nicely. I had already had a previous operations years ago so they tried to go in on the other side laparoscopic but had to convert to open from the belly button down. Since my post op appointment I've gotten back on 6mp and slowly cranking up my dosage. Also waiting on the approval from doctors and insurance to start Humira(the lesser of evils considering my veins cant tolerate regular infusions anymore). Also thankfully I got in contact with someone in the financial department who is going to help get the ball rolling with my medicaid application because the first time I applied my case worker basically just passed right over em which was a whole stupid situation.. So hopefully the insurance stuff can get figured(fingers crossed).

Thankful meds and insurance are finally getting sorted, however, one of my biggest struggles is still nutrition as I'm sure is a problem for most patients out there. And of course my hemoglobin level are on a "downward trend" as my GI's nurse put it so super anemic. Also I'm super aware that most animal products are just really bad for business(temporary or permanent not sure tbh) so I've been trying to limit and wean myself off of the dairy and most meat(which isn't incredibly hard cuz not the biggest fan of meat to begin with). Not to spam the new member thread but I would be incredibly grateful to any other patients who are also non dairy/vegan Crohnies if you had any suggestions nutrition/diet-wise! Thanks again for all the welcoming replies
08-18-2018, 10:50 AM   #15
cmack
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I'm sorry to hear that you needed surgery, Jess. It must be good to have that over with! That's nice to hear that you healed well. I don't have Crohn's for sure, I have unspecified IBD which is suspected to be Crohns. I am non dairy and vegetarian, pm me any time if you have questions about your diet. I like helping people.
08-18-2018, 11:47 AM   #16
Tuff
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Here's a list of iron rich vegan foods. I used to be anemic, but it's much better now. https://veganuary.com/myths/anaemic-safe-vegan/
08-18-2018, 07:42 PM   #17
cmack
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Hey Jess,

Here is an interesting link about being vegetarian -VS- omnivore. https://nutritionfacts.org/video/omn...eficiencies-2/ This is a good site for nutritional info. It was recommended by my excellent Canadian GP. I hope it helps.
08-21-2018, 07:27 AM   #18
Jenn has Crohns
 
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Hi, I'm Jenn and I'm new to this forum also. I was diagnosed in 2012 with severe Crohn's. I had an ileocecectomy in 2013. I also had many fistulas with one in particular that went into my bladder. I was very ill and actually had poop and food come out of my pee! If anyone has Crohn's disease its me!
08-21-2018, 07:09 PM   #19
cmack
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Hi Jen,

Welcome, I'm sorry for your need to be here but also really glad you found us. Come here any time.
08-23-2018, 07:32 PM   #20
Flap Jackson
 
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Hi Jess.
Don't know why I just saw this post for the first time. I also live in GR. I had my ileocolic resection 22 days ago. My doctor was/is Dr. Hoedema. She is fantastic! My Gastroenterologist is Dr Kalim. I've only met with him twice so far, but he seems like a great guy. I have an appointment with him at the end of next month, and I'll be going on Remicade. Who are your Doctors? I don't have much to add, it's just not that often that you see someone from the same area. Good Luck!
08-23-2018, 07:56 PM   #21
cmack
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Good to see you, Jackson!
08-24-2018, 09:25 AM   #22
cprentice
 
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Hi Jess! I live in the Lansing, MI area - diagnosed with Crohn's in 2012 (though it went un-diagnosed since childhood). I follow whole-foods, plant-based lifestyle and have been off all medication and in remission for 2 years now - absolutely due to my diet and lifestyle changes. I recommend looking into the Engine2Diet to learn more (that's where I started), and there's a great GI doctor that believes in the healing benefits of a plant-based diet for Crohn's that's written several books on the subject - Dr. Robynne Chutkan. Hope this is helpful!
09-17-2018, 07:16 PM   #23
jacinthebox
 
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Thank you guys for all the awesome advice/suggestions! And hey Flap!!! Its so cool to hear from somebody close by lol. You're right its pretty rare to catch someone from the same area! And my GI is Dr Ferch, I haven't been with her very long but she good for the most part. I know its a serious disease but shes always sooo serious haha but she's been inside my ass so I guess I trust her hah. And my surgeon was Dr Luchtefeld. Hoping I don't cross paths with him for a long long time but he's a great doctor and actually laughed at my horrible shit jokes lol. Hey feel free to pm me anytime, Im like over the moon that you're in GR haha
10-08-2018, 11:03 PM   #24
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