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Crohn's Disease Forum » Your Story » Just found out I have Crohns


07-09-2015, 08:21 PM   #1
Anthony33
 
Join Date: Jul 2015
Location: Watertown, Connecticut
Just found out I have Crohns

Hi everyone,
I wanted to share my story and find more information and support so I decided to join the forum. I have had fatigue and joint pain for the past 3-4 years. I was worked up for Lyme disease and several other things all coming out negative. It was extremely frustrating.
About 3 weeks ago I developed sharp abdominal pain above my umbilical area and eventually after 4 days went to the ER. On CT scan it showed global ileitis and there was a possibility it was Crohns. I have always had some mild discomfort and occasional pain but nothing like this. I attributed my loose formed stools to nerves about work and the stress of work. I went for a colonoscopy today and got the diagnosis of Crohns. I am going in 33 years old and I am totally overwhelmed by the diagnosis. I think part of it is because I am a nurse and have worked in the emergency room for many years as well as cardioligy and know a lot about the medical field. I go for my follow up appointment in a little over a week. Most of my inflammation was in my terminal ileum. It seems to all make sense now in regards to the fatigue and joint pain that no one could figure out. My question for everyone is how is your day to day quality of life, do many have the fatigue and joint pain I have been experiencing, and what are some good coping mechanisms you have used. My wife is a nurse as well and she is having a tough time with my diagnosis too. I think it is so great that there are so many great stories of support and treatments on here and look forward to becoming part of this group.

Anthony
07-09-2015, 09:20 PM   #2
Dan1970
 
Join Date: Jul 2015
Location: Bothell, Washington
Hi Anthony

I was your age when I was diagnosed too. I was really angry with life for a while and really didn't want to talk about it - even with my wife, who, like you, is a nurse. She even worked on the Med\Surg ward and had dozens for Crohn's patients over the years. She would tell me about 78 pound girls and men with colostomy bags and young people who were in so much pain all the time that they would sometimes just cry for hours. Then she would poke my rather round belly and tell me she was thankful to be married to the only fat Crohn's patient she had ever seen.

Over the years, I have had good luck and bad with various drugs and treatments but I keep trying new ones. You will find on this site rather quickly that there is no single answer. You just need to keep your head up and keep trying until you find something that works.

My day to day quality of life is pretty good, all things considered but over the last year or two I have lost the ability to do things like walk the dog or go camping with my family. Taking my daughter to the mall inspires a lot of stress. I need to be close to a bathroom and physical activity like that induces diarrhea(I'll learn to spell that someday).

For others, its just pain. For some its gas. Your disease is going to take it's own course. Don't get stubborn about eating the same way you always have. Don't eat the foods that make you sick - whatever they are and if they are your favorite, find a new favorite.

I hope things go well for you and you have an easy time of this. Talk to the nurses on the Med\Surg ward for recommendations on a GI. They know who the best is.
07-09-2015, 09:32 PM   #3
Lady Organic
Forum Monitor
 
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hi Anthony and welcome.
I have concomitant joint pain too. It came 10 years after initial CD diagnosis. Hopefully yours will resume when your CD is put to remission and so your fatigue too. In my case, the joint pain came after remission and remains chronic, but mild at least. have you been given cortico-steroids to calm down the flare? any improvement so far, bowel or joint with this medication?
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
07-09-2015, 09:33 PM   #4
teeny5
Senior Member
 
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Join Date: Jul 2008
Location: California

My Support Groups:
Welcome to the forum!

Day to day depends on if I am flaring or not. When flaring I have pain after eating, night sweats, fast pulse, mild fever at times, diarrhea several times a day and am limited on what I can eat. I also felt terrible due to major weight loss, anemia, and the toll constant inflammation takes on the body.

Currently I am in a remission type period (I say remission because my blood work is good and little to no symptoms- I know for some it would not be total remission, but for me it is the best I have felt since Crohn's came into my life). I have a colonoscopy on Monday so that will show if I still have inflammation.

Anyway, right now I do get occasional pain and occasional diarrhea. I can eat almost anything though beef, lettuce, apples, fried food, spicy foods and high fiber foods can give me problems still. Milk and ice cream I think will permanently off my menu. I can tolerate most cheeses and I thought yogurt was ok but recently it gave me terrible cramping. Day in, day out I feel great! Like I said the best I have felt...but I don't know that I will ever feel like I did before Crohn's. I seem to get tired easier now and often get pain if I over exert myself...hard to stay in shape because of that. I do get jaw pain, but I think that is due to clenching my jaw when stressed or in pain. I have lower back pain that gets very bad if I sit for too long, but not sure if it's Crohn's related or not. Sometimes my knees give me problems, but not bad.

Coping with the disease for me has been in part finding ways to still do things I love...maybe I can't go hiking for as long or far as I once could, but I still go for short hikes. Wherever I go I scope out the bathroom (just in case) and always make an effort to go before I leave the house. If we are going to travel I make sure I have a plan if I start to feel ill. I got stressed out before a trip one time and went on avliquid diet right away...took it easy with food the first couple of days, just to be cautious. I eat smaller meals which helps. I have GERD as well so I often get a full/nausea/vurp feeling when I eat. It helps if I eat slower or eat, take a break, then continue. I stopped trying to explain too much to people...that was frustrating. Instead will just tell them that I don't like to eat something or simply that I am not feeling good or have an upset stomach. Only my close friends and family get any details of the disease. Or if someone asks I will always explain. Just too hard to try to get people to understand or people say dumb things that would upset me. Heating pads or warm baths can help with pain. My GI said I will be on medication my whole life...sometimes that gets me down, but I know I have to take them no matter what (I missed my meds before and right away started flaring). Personally the more I knew about the disease the better I felt. I googled a lot, but this forum helped the most. Lots of great info here. Try searching the threads. It's amazing how many people were similar to me...I felt very isolated, lost and depressed in the beginning. The information made me feel informed and more in control. The support of others was and is what's gotten me through the toughest of times.

For me the bad times were bad, the good times are AWESOME. I plan to enjoy it while it lasts!

Sorry for all the ramblings, hope it helps! Oh I forgot to mention, I have Crohn's but only in the colon as of yet.
__________________
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
07-10-2015, 08:50 AM   #5
Anthony33
 
Join Date: Jul 2015
Location: Watertown, Connecticut
Thanks you everyone for the kind words and sharing your experiences. I look forward to learning from all of you and leaning on many of you for advice. This is a great forum. Thank you again for sharing
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