Newly diagnosed but do not have some symptoms

Hello,
I am thankful for finding this site and have learned quite a bit navigating this morning. Hello to everyone!!!
My story: For years I have had problems with my intestines. It started when I had to go thru interferon/ribivirin tx for Hep C (contracted thru a blood transfusion in 1983 during the birth of my daughter in Singapore). I would be trying to go to the bathroom oo:, with a trash basket in front of me (nausea) in severe pain for years. I would tell the doctors but no one seemed concerned. Then one day the pain was so intense I went to the emergency room, was admitted when they found a mass in the colon. They did a colonoscopy, diagnosed cancer and scheduled surgery. The next day as I was wheeled in the operating theater my surgeon told me the biopsy came back as showing no cancer. They found a massive infection and necrotic bowel (dead). They removed the section of bowel along with my appendix due to location. Still no diagnosis. After 8 days I simply went home on prilosec.
6 years later:
5 months ago I began having intense pain in my abdomen and had to go to the emergency room. I was given a colonoscopy and they found 2 ulcers. Tomorrow I am having the barium upper GI study. The doctor said he suspects I have had Crohns and Ulcerative colitis that goes back 6 yrs. I have had bleeding ulcers in my stomach before. Since the flare-up 5 months ago I have had 2 and have been on antibiotics. I do not have diarrhea nor have I ever with this and I have NOT lost weight. I have swollen abdomen, nausea, pain, headache, fever. I can feel everything moving through my intestines and it hurts. Is that normal? Does anyone else feel that? Overall I feel horrible, no energy. I am also on morphine sulfate and percocet for a chronic back condition which requires steroid injections into my neck and lower back. Maybe thats the reason I do not have diarrhea? My doctor has mentioned Humira.
Does anyone think I may have been misdiagnosed? Due to the lack of those 2 symptoms?
Thank you so much for your input. I look forward to being a part of this forum, to learn..then to help others who have been newly diagnosed.

Hi LynnMarie,
I have never had much for diarrhea either. I have had more problems with constipation than anything else, and I've talked to a few others who have experienced the same thing. I think it's safe to say that no two cases of Crohn's are alike, and although you might not have some symptoms, that doesn't make your condition any less real. I can also sometimes feel things moving through my intestines. When they did your colonoscopy, did they take biopsies? That is one solid way to diagnose, because they can assess how the layers of your intestine are affected. I think the weight loss thing has more to do with how much you are able to eat and how your body absorbs nutrients. Do you keep a food diary to find which foods cause you distress? That might help too.
My doc thinks I might have been misdiagnosed so I am resuming testing to discover if I do have Crohn's or not, so I have some of the same questions you have. I'm sorry to hear you're feeling so horrible. I am also on pain meds for a chronic back condition, and I think that does help cause constipation as well. Hopefully others who might have answers as well jump on here and help you out - everyone on here is really great, glad you found the forum!

Hi McCindy,

Thanks so much for your reply, I appreciate your comments. I am going to start keeping a food diary cause today I'm paying for my bowl of raisin bran, yogurt and fruit last night. I am still learning yes and no's for my body. I am sorry you are experiencing all these symptoms and now how to go thru additional testing. What is it they think you have? Yes the doctor took 2 or 3 biopsy's around the ulcers. I was suppose to follow up with him but frankly I am soooooo tired of doctors, that I didn't until a few wks ago. At the time of the biopsy He was unsure if its was crohns or ulcerative colitis. Now he is naming it. Maybe tomorrow will shed new light after the barium test.
What type of back issues do you have? I have a wonderful compassionate doctor who helps me so much.
Thanks again!

Welcome to the forum, LynnMarie!

You definitely don't have to have diarrhea to have IBD. There are quiet a few forum members (such as mccindy) who don't have diarrhea. Weight loss is not a requirement either. Both symptoms are common, but there are definitely people who don't experience them.

Have the biopsy results come back? Did you have an appointment with the doctor to go over the results? Biopsies are the most definitive way to diagnose IBD, so that's very important. If you haven't discussed the results with your doctor in person, I'd personally schedule an appointment to do so.

I hope you get things figured out soon! :hug:

My doc is unsure, he is investigating as he says! He's thinking if it's not Crohn's (which is still one of the possibilities) it could be IBS or endometriosis, or a bunch of new food allergies. So, tests are in my future until we figure out what it is.
I'm glad to hear you did go back even though you were feeling frustrated. Finding out for sure what you have certainly makes a difference in how you are treated, so getting a diagnosis hopefully will put you on the road to remission.
I have degenerative disk disease in my back and have had a 2-level fusion (L4-5 and L5-S1), as well as a partial diskectomy and laminectomy on L3-4. I have a lot of chronic pain in my facets and muscles. I had a great doctor and PT but I had to move for a new job so I'm working on finding all new medical support. I'm glad to hear you have a good doctor, that really does help so much!

Oh, and for your food diary - I started an elimination diet which seems to be helping. If that calms things down, then you can try to reintroduce foods one at a time and see how it goes. My triggers seem to be gluten, dairy (I'm also lactose-intolerant), fresh or dried fruit, raw veggies and some cooked veggies, nuts, and sugar. Doesn't leave much! I can eat skinless boneless chicken, seafood and fish, white rice, coconut oil, almond milk, eggs, and skinless sweet potatoes so far without ill effects. I'd start there and see what works.

Hi McCindy.

You seem to have the same issues with your back as I. Its L2-5 and S1. I have severe stenosis, scoliosis, slipped disc etc....and then in C5-6 I have the same issues. I just came back from my barium test which took hours. It was real slow and backed up as it was going through from the end of the small intestine to the large. I'm hoping to get the results soon.
I am definitely going to try the elimination diet and start from there. Thanks for the info.
I hope you have a wonderful weekend and feel decent.
Lynn

It seems unfair, doesn't it? That we get to deal with back problems and GI problems at the same time! It can be overwhelming. I'll bet you're glad to be done with the barium test and just be waiting for results. I hope you get good answers!
I'm glad I could help with some diet advice. I hope it helps you. It will probably also help to keep a food diary, so that you can figure what foods specifically trigger for you.
You have a good weekend too!

Hi. I have a daughter with crohn's who gets D only 3 or 4 times when having a flare up. She is also overweight right know. I have a son recently diagnosed with crohn's who is always constipated, he also suffer from neck, back and joint pain. As you can see, it's different symptoms even between siblings. Did you have your back problems before or after your GI problems? I hope things get better for all of you.

Araceli,

Please excuse me for taking so long to reply to your post. I appreciate you taking the time. Things have been crazy busy.
I really feel for your children. To be so young and to have so much pain. Just doesn't seem fair.
My back issues stem from scoliosis, stenosis, slipped discs, protruding discs, arthritis....its just a mess. When I was a teenager my chiropractor wanted to put 1/2" lift on my left shoe cause that leg was that much shorter. But...a teenager who is "different"? I wouldn't of been caught wearing that. Now I wish I would have. I am on Extended Relief pain meds with some others for breakthrough.
I don't know much (yet) about crohn's and was surprised to hear it affects your son's back and neck after a flare up. I will have to find out more about that.
Thank you again for your reply, Hope you have a good wknd.
Lynn

Hi LynnMarie. My son's pain is not due to a Flare up, It's due to Spondylitis, Some people get crohn's and some kind of arthritis. While others no joint pain at all, or pain only when in a flare. If you can, read about Spondyloarthopathries. (I am pretty sure my spelling is wrong)