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Newbie, very confused

I just got diagnoised with Crohns friday the 6th, and it seems the more research I do the more confused I become. The way I understand it, Crohn's is a serious diseas, but I can't understand why. Can you guys shed some light on my situation, your experience, if you needed surgery , how soon after you got diagnoised with it did you need surgery, just the basics I guess, because I can't seem to find any source of information that explains why it's serious, or debilitating disease . Right now , with the symptoms I have, I wouldnt consider it serious...
i am cofused and , honestly kind of scared, please help
 
well i would say in the past two years or so , my body has slowly limited down the foods i can eat. I either get really bad cramps or start to feel just generally really under the weather. I have read everyone say their pain is on the right side, but mine is always on the left. I went to a vegan diet and the "under the weather" feeling went away, but it's come back. Now I don't even have to eat any of the bad foods and sometimes it hurts. two months ago I was crying like a baby because the pain and my friend almost had to carry me to the car. I sadly didnt go to the doctor then , and i feel I should have. ive had a few flare ups since but not that bad. I also am generally conspiated or having diaherra, never really normal anymore. I currently have little energy. I cant even play tug of war with my little dog without being tired. its day to day really, some days i feel fine , others i dont.
 
Just for the record, I'm undiagnosed. I have suffered with constipation, abdominal pain, abdominal distention, gas, GERD, esophagitis, as well as gastritis all my life. I have severe constipation, dry eyes and a host of other issues. Had my first endoscopy when I was almost 49yrs. that verified the upper GI symptoms. Last month I had a Sitzmarker test that showed my colon is not working. I want so desperatley to have a colonoscopy w/biopsy in hopes of getting some answers. Other test if warrented. I just want some answers and some relief from symptoms. I can empathize with your situation.

You can have irratible bowel syndrome (IBS) in addition to crohn's. People with IBS can have either IBS-D (diarrheah), IBS-C (constipation) or IBS-DC (alternating between D & C).

Have you mentioned to your GI doc and/or PC that your pain is on the left side? If not, a phone call would be in order. What test have you had done so far?
 
PC? i mentioned to the nurse the about the pain on the left, but I didnt really talk to the doctor who scopped me out. I would assume the nurses notes told him about the pain on the left . but also at the time i was unaware that pain is usually on the right. i see him in a couple of weeks, he biopsed some stuff, but i dont know why he did. I've had a few blood tests done, a dna pannel of sorts to look at food allergies and such (im adopted so we have no medical history) and the scope down the throat and up the bum, other than that no other tests.
 
and the pain on the left goes from my lower rib cage down to my hip bone. sometimes it wraps around my the left side to my back along my rib cage. there's times it just an annoying ache and other times it puts me on the floor crying. currently as we speak it's on an off annoying ache.
 
well i would say in the past two years or so , my body has slowly limited down the foods i can eat. I either get really bad cramps or start to feel just generally really under the weather. I have read everyone say their pain is on the right side, but mine is always on the left. I went to a vegan diet and the "under the weather" feeling went away, but it's come back. Now I don't even have to eat any of the bad foods and sometimes it hurts. two months ago I was crying like a baby because the pain and my friend almost had to carry me to the car. I sadly didnt go to the doctor then , and i feel I should have. ive had a few flare ups since but not that bad. I also am generally conspiated or having diaherra, never really normal anymore. I currently have little energy. I cant even play tug of war with my little dog without being tired. its day to day really, some days i feel fine , others i dont.
You're running down some of the symptoms of Crohn's. fatigue can vary from a little to extreme. Inability to eat certain foods without some impact, ranging from diarrhea to obstructed bowel, is another. Impersonally have had left side abdominal pain in addition to centralized and right side. When I have pain on my upper left side of my abdomen, I'm usually having a partial or full bowel obstruction, and the pain is excruciating.

Crohn's is a very individual disease, and your symptoms may be quite different from other people; in addition, the treatment plan that helps you could be very different as well. You should probably talk to your GI about your specific symptoms and a treatment plan that he/she wants to try for you.
 
Hi, I'm sorry that you've joined the Crohn's club but welcome :) It is going to be really confusing at first. You've only been diagnosed a little over a week and Crohn's isn't an easy disease to understand so definitely don't be hard on yourself. Early on, the diagnosis, the treatments, wondering what the future will hold, is a bewildering time for a lot of us I think.

I could tell you all about my experience with Crohn's (diagnosed 1997, Crohn's disease in the small bowel, with strictures in the jejunum and ileum, 3 surgeries, currently on methotrexate and humira, having tried a whole heap more of other meds and other treatments and on and on) BUT the really important thing is that Crohn's isn't a disease that manifests itself in the same way in each of us. We won't all have the same symptoms, respond to the same treatments or have our disease follow the same path.

So on the one hand that makes it hard to figure out what to expect but on the other hand it means you shouldn't let yourself be too frightened by the things that you hear others have experienced because your disease may not follow the same path at all and you may never experience what they do.

Specifically to answer your question about surgery, you really can't go by other people's timescales for surgery (and some are lucky enough to never need it.) The decision to have surgery must be led by the severity of your symptoms and any other risks that surgery might be required to alleviate.

As to why it's a serious disease, well I'm hoping this doesn't frighten you more but to be completely honest, sometimes the complications of Crohn's can even be life threatening but that's where a good doctor who will monitor your health and find the right treatment that works for you comes in. And why it's so important to do both those things. There are also ways in which Crohn's can significantly affect the quality of your life and reading your description of how you are feeling, you have already started to have some of those - pain that makes you want to cry, regardless of what it means about what is going on inside you, it's already affecting your life in a serious way because if you're in that much pain then you are not out living your life the way you ought to be able to. And that matters. By the way I think a lot of us have been there but what i see now, when I read your account of how you feel and then hear you say that you can't understand why it is considered serious, is something that is familiar to my experience - we have got so used to being in pain and eating less and less that we start to consider it normal and not too much of a big deal. Basically it has already gone on so long that our judgement of what normal health is has been altered. Even though some days you say you feel fine, being too tired to play tug of war with you dog means you are super tired. That likely means active Crohn's and/or your food consumption has got so low that your energy levels are super low...both things that need attention quickly. I would have to say the disease has already begun to be debilitating for you.

I think you need to have a good talk with your doctor. Prepare a list of questions in advance, because it's easy to forget something when you are in an appointment. Do you know how they confirmed the diagnosis? By colonoscopy? It's always good to know that. Also ask: What other tests have they done? And what did the tests show them? In which parts of your digestive tract do they see active disease? What treatments have they prescribed/are they going to prescribe? What criteria are they going to use to decide if those treatments are working?

I'm sure you have lots more questions and that people here can help you figure out other useful questions to ask.
 
yes they confirmed it by a colonoscopy, they also biopsed some tissue, and a few blood tests. we dont have the results back yet. hopefully next appointment i have can clear up some of my questions. I eat a good amount, the foods I can eat. I haved wanted to go vegan for awhile now anyway, so that wasnt a huge issue. even before finding out i have crohns, I payed close attention to what i ate to make sure I was geting what I should, nutrient wise. most the time I am generally tired, which I attributed to being normal. I work out on a regular basis and usually I am just fine, but like I said other days , i dont want to get out of bed im so tired. I guess you could be right, it's already altering my quality of life and im just used to it now. getting diagnoised has answered a lot of questions, i guess just like anyone, i am apprehensive about the future. here in two weeks or so i go back to the doctor and he and I will talk about treatment options . currently im only taking omeprazole, I dont know what other treatments he wants to do. I know when he talked to my mother, he said he's happy we caught it early and we're going to try our hardest to make sure it doesnt get worse. So I am optimistic, but I guess my brain is going to the worst scenerios and makes me think that's what i have in store for myself.
 
PC is primary care doc.

The decending colon starts at the bottom of the left rib cage and goes down to the pelvic area.

The link below shows the anatomy of the colon in the body & where it's located.
http://www.cancer.gov/cancertopics/pdq/treatment/colon/patient


does crohns effect the colon ? i thought it was just the intestines? sorry for my lack of knowledge and potentially asking stupid questions. Im a mechanic lol, I know nothing about anatomy .
 

DJW

Forum Monitor
Hi. No stupid questions. Crohns can affect any part of your digestive track from mouth to anus.
 
I second that. There are no stupid questions, just stupid people who might want to make you feel stupid but they are to be IGNORED. And in fact I think it can be helpful to ask your doctor questions, not just for the answers but to see how they respond. Because with Crohn's you definitely need a doctor who is prepared to answer your questions, whatever they may be, and no one should ever make you feel bad about wanting to understand more about your disease. With hindsight, I feel more stupid about not asking more questions sooner after diagnosis...so ASK AWAY!!!!

It's great that you already know how it was confirmed and that the test was basically the "gold standard" for diagnosing Crohn's. That means you can proceed with confidence that it is the right diagnosis.

One of the things I wish I had understood earlier was - and I'm not saying this just because you are a mechanic but because I think this is naturally how a lot of us think about the disease early in the whole journey - symptom/observation A doesn't always relate to cause B, like it might with a car, and symptom X doesn't necessarily progress to Y and Z.

And that's why no one can really say what it means when you have pain on the left hand side and it is just a generalization, and not something to worry too much about, when you hear that most Crohn's patients have right-sided pain.

Having said that it's definitely useful to familiarize yourself with the anatomy of your digestive tract like you would with the parts of an engine. Here's an illustration:
http://upload.wikimedia.org/wikipedia/commons/c/c5/Digestive_system_diagram_en.svg

But basically if you know when you put food in your mouth and swallow it goes down your esophagus and into your stomach, then moves into your small bowel the first short part of which is called the duodenum (it's rare to have Crohn's there), followed by the jejunum and then the ileum. The ileum is the longest part of the small bowel and the terminal ileum (ie. the last part) is the most common area, I believe, in which to have active Crohn's if you have disease in the small bowel. There's then a valve (the ileocaecal valve) before your colon starts, and the appendix is right at the start of the colon too, and your colon goes up from the lower right hand side, across the top of your abdomen and then down the left hand side of your abdomen, where it joins your rectum which is attached to your anus.

So your digestive tract is the whole thing mouth to anus and your intestines are your small bowel plus colon (also called large intestine).

Some people have disease in the small bowel only. Some people have disease in the small bowel and the colon. Some people have disease in the colon only, and with that potentially disease in the rectum and anus.

Much more rarely people can have disease in the stomach or esophagus, though mouth ulcers are fairly common. And some people have extra-intestinal symptoms - joint pain to name one.

You can also generally split patients into groups like those with stricturizing disease and those with fistulizing disease, things like that.

And that's more than I understood when I was first diagnosed :D
 
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today it hurt to sit down, or stand up. it was like when you bruise your tail bone exept deeper and much sharper pain. i havent had this pain in awhile, but it was pretty bad today.if i tried to go to the rest room , i felt pretty sever pain, maybe a 9 out of 10. i dont generally have this pain, and i never thought of it to be anything serious until now. have any of you folks ever experienced that?
and im constantly hungry, which could be just the way I work out ( i workout pretty intensily , therefore my metabolism is up). I have read about malnutrition, and I assume that can cause abnormal hunger?
 
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