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Recently Diagnosed with CD....

Hi All!

As the title states, I have recently been diagnosed with CD. :( I truly appreciate anyone that takes the time to read this post! It is my first time doing anything like this, and I honestly need to get everything out of me....so I apologize if it's a little lengthy!

It has been a bit under a year since I first started having symptoms, (mostly stomach pain, and constipation, rarely diarrhea, but sometimes whole foods in the BM's *yuck*) so I'm thankful that I was diagnosed this early. Last summer, I was having terrible pain in my stomach and decided to go to the ER. After some blood work, they noticed that my wbc was high, and ordered a CT scan. I'm not exactly sure what the scan showed, but they sent me home with a diagnoses of "possibly IBS, or maybe a stomach bug?" I was fine after a few days and thought nothing of it. Then, towards the middle of Sept, I returned to the ER with the same symptoms, and the same outcome from the tests....but they decided to refer me to a GI specialist this time! Thanks! He set up a colonoscopy and endoscopy fairly soon after that, and told me that he took a couple of biopsies, but it looked like early signs of Crohn's. After about a week, he called and said that he wasn't sure and needed another opinion. He did this two more times, and then finally said he wanted to do an MRI. He never called me with a date, so I let it go.

Now, let me stop and tell you that I am 22 years old (female) and I suffer from severe anxiety and depression, and have since I was 14 (although the depression most likely started earlier). Well, because of this, I haven't kept up with doctors appointments the way that I should, and when I do, I just let them say what they need to, don't ask questions, and go home. It is hard for me to leave the house most days. I've been very neglectful to my health over the years, and am very ashamed of this, but am working every day to make sure that I keep up with this now.

Anyways, I didn't really take this seriously because I thought that, after I was fine for awhile, and the fact that the Doc didn't have an answer for me, meant that I was going to be okay. I was.....up until a couple of weeks ago. I had to return to the hospital, again with the same symptoms, except a little bit of pain towards the bottom right side of my stomach (when before it was mostly located in the front [above and below the belly button]). This time the ER doctor actually explained things to me. First, she said that the CT showed that I had inflammation in my (terminal ileum...?) Then she told me that I did, in fact, have CD. They admitted me that night with IV antibiotics because my WBC was extremely high. They also had me taking Prednisone, Flagyl, Asacol, and Dilauded for the pain.

When I met the hospitalist the next day, he told me that what was happening to me didn't really resemble CD. Apparently, every time I had been seen at the ER, the inflammation was in the same place, which he said was not the norm. Also, by that time, I was off of the pain meds and my symptoms were pretty much gone...which shocked him! This gave me hope, because all day I was thinking that I had been diagnosed with this disease, when, come to find out....that wasn't the case! They sent me home, and I made an emergency appt with my GI Spec a few days later.

Well, after about 4 minutes in the Doctors office, I had my legitimate diagnoses of Crohn's Disease. After all of that. I had this thought before that day, that if I did have this disease....I would be fine. It's no big deal, I can make it work. As soon as he said the words to me...it was real, and I was thinking the worst. I'm honestly terrified. I didn't really know what questions to ask, I was pretty much in a daze. He told me that it was located in my small bowel....which means that, if they have to do resections in the future, this is very dangerous. He said that there isn't enough in there to keep removing it, so the main goal is preventing that. That's scary. He then said that he was planning on prescribing this medication (he referred to it as Chemo for Crohn's, but I can't remember the actual name) because it is very effective, but has major "possible" side effects, like Pancreatitis, and Cancer. This is also very scary. Next, he told me to grind my own flax seed, and eat 2 tbsp a day, and take 2 probiotics every day, and prescribed me with Prednisone again because I had run out of the ones that I received at the hospital. I was sent to do some blood work a couple of days ago before he gives me the new medication...I'm not sure exactly what he wants to check, but I'm still currently taking the Asacol from before.

Because of my lack of medical responsibility, I don't know what kind of questions to ask, and because of my anxiety, it's hard for me to ask the ones that I do have. The only thing I got out was..."What should I eat?" in which he replied "Keep it dull, bland and boring. I don't want to get into food this visit, because this is enough for you to worry about." I have to see him once a month for a very long time.

I don't have a whole lot of people that I can talk to about this, and I don't know anybody that suffers with this. I was hoping to maybe get a little bit of help from the people in this forum with some of the things that I should talk to my doctor about...questions and concerns, and how to bring them up when I'm in there. I want to know about certain things, like what the colonoscopy showed, and the results of the biopsies, but I'm very embarrassed to ask. I know that I shouldn't be, but this is pretty much all new to me.

Again, I appreciate it if anybody stuck through to the end of this....well...book :) I'll appreciate it even more if you reply with anything...even just a smile to help me look on the bright side in this terrifying time.

--KC
 
Hello KC and a very big warm welcome to the forum :) I am sorry to hear about your Crohn's diagnosis but really glad that you have found us here. Most of us know exactly what you are going through - the relief of finally knowing what is wrong, but the realisation sinking in that you have a chronic illness.
I don't really want to question your GI as I am not a medical expert, but I find some of his advice a little confusing. The bowel is pretty long and people do have multiple resections, but anyway, hopefully it will not come to that for you.
The 'Chemo' he is talking about could possibly be Remicade(Infliximab) as it is administered by infusion and is know to be a very effective treatment. You'll find more information about it in the Treatment Sub Forum.
He's right: there is such a lot to take in when you are first diagnosed and the time between appointment cans seem to stretch out so long. However, it gives you time to do a bit of research yourself, as you are doing, and perhaps write down questions you have to ask when you see him again. It's so easy to forget on the day. Also, taking someone with you to your appointments can help.
You mention eating - are you finding that your symptoms get worse when you do? That's very common but unfortunately there is no one 'Crohn's Diet' as people react differently. Keeping a food diary and trying an elimination diet to identify what your triggers are can help with symptoms and also give you a little bit of a sense of control. You'll find information on these in the Diet and Fitness subforum.
Sorry to bombard you with information but I hope that some of it will help. As I said, there's a lot to take in, but you've come to the right place for help.
 
Hi, I wish doctors didn't contradict themselves so much, but I think often test results do require quite a lot of interpretation, so two doctors can look at the same test result and reach different conclusions, or a doctor can reach one conclusion one day, but then after comparing it with other information (such as your symptoms, your response to treatment, etc.) come to a different diagnosis. It sounds like you've got a concrete diagnosis now though, so you're through one of the hardest parts of Crohn's - searching for a diagnosis.

Crohn's can vary hugely in severity. Some people will get only mild symptoms or remain in remission (no disease activity) for years, while others have a much more difficult time. It can be a bit overwhelming learning about Crohn's at first, but with time you'll figure out how to live with it, and even if you're unfortunate enough to have a severe case, you will get better at managing it, not just through medications, but also psychologically - you will probably find it much less scary when you've had it long enough that it has become familiar.

I think that even more important than finding the right questions to ask is finding a doctor who you trust. If you're unsure of your current doctors, you may like to ask for a second opinion.

I find that the most important things I ask doctors about is medication and surgery. Some of the medications used for Crohn's do, as you say, have very difficult side effects, so you might like to discuss with your doctors any fears you have about the risks of any medication, ask how long he'd expect you to take a medication for, and ask if there are alternatives if you find something is not working or if you are struggling with side effects. There are many ways to treat Crohn's, so it can take a while to figure out what helps you, but again, with enough time most people find something that improves their symptoms.

Not everyone requires surgery, so don't worry about it too much prematurely. You do have a lot of small intestine, so if it comes to the point where some needs to be removed, this shouldn't effect your health too much in the long term. I've not had small bowel surgery, but I've had several surgeries to do with my large bowel and rectum, and can honestly say that once I've got through the few weeks of recovery time, I've never felt worse as the result of any of my surgeries.

Diet is also very individual, though there are some guidelines for diet that apply to a significant proportion of people with Crohn's. You can't treat Crohn's with diet, but most people find they can manage their symptoms easier by adjusting what they eat. Some of this you'll already know, as the foods that cause problems for people with Crohn's are those that even people without the disease may find hard to digest - large, stodgy meals, spicy food, alcohol, etc. Some people find high fibre foods (whole grains, nuts, some vegetables) cause them problems. A lot also have problems with lactose (in dairy products) and grains which contain gluten. What works for me is actually pretty much what your doctor said - bland, though I don't find all bland food boring, and low fibre.

You might like to see if you can get copies of your tests results, so if you ever see a new doctor, you have your results to hand. It might help to ask for some clarification about what your results show, as it seems they've been quite difficult to interpret. And if you have any symptoms that are causing you particular problems, you can bring them up with your doctors and ask about treatment options - e.g. if you're struggling with pain you can ask about pain management treatment.

Just remember to relax - you will learn how to manage your disease and it won't always be this new and scary, you will start to find you're feeling normal again, even if it's a "new normal" with Crohn's disease.
 
Hello and welcome to the forum :),

I'm so sorry you've been diagnosed with crohns but at the very least maybe now a treatment plan can be sorted for you. It is an awful lot to take in and my doc did the same with me at the start telling me not to worry too much about food, I had already been given dietary advice by a dietician. I was also told to take it a day at a time which I did (possibly still do :)). You've already been given great suggestions about keeping a food diary, its also a good idea to record any symptoms you have each day as well, this can also be useful when sending GI appointments to do they can see day by day how you are getting on.

It's already been suggested that you write any questions down, it might be helpful for you as you were saying you had difficulty asking them, to just give your doc the list and then you will be able to go through them together. With regards as what to ask? You have mentioned some questions in your post, jot them down and then anything else that pops into your head before your appointment. I felt truly overwhelmed when I was diagnosed and my head went to mush at my follow up appointment and I don't think I asked anything!! Lol. So now I write them down and when my GI sees my little pink book coming out he knows I have questions.

Don't give yourself a hard time about what went on in the past when you said about not taking care of yourself, that time is gone and what matters is doing it now and that's exactly what you are doing, we can't change what we did before but we can learn from it and make changes and I'm talking from experience. I really hope that you find the help and support here that I have, please feel free to ask any thing and there's is bound to be somebody that will be able to answer. Take care and keep in touch. :ghug:
 
I want to say Thank You for the quick replies! I truly appreciate it, and hope that at some point, I will be able to help someone new to this also!

To answer some of the questions....first, when I'm not in a flare, I seem mostly fine....food doesn't seem to be that big of an issue, although I sometimes have gas pains, and every once in awhile I'll have these strange spasms inside my belly. I tend to be constipated often though, going once every few days. I will definitely make a food journal and jot down everything that I can...that's a great idea!

Also, asking for copies of my records is a good idea...I had been thinking about getting a second opinion, or maybe seeing a Crohn's Specialist? Are second opinions really important, or should I trust the doctor I have now? I have heard he is the best in my area...but that honestly isn't very reassuring...I live in the sticks. :)

Also, one more thing...I have heard that there is some joint and back pain that comes along with this disease? I'm wondering if this would begin in the early stages....or only if things get really bad?

Thanks again for all of the responses! I hope to become a part of this community, and give helpful input and advice when I have come to terms with this illness and get it under control! :)
 
As I'm still relatively new at this (dx 6months) my answer my not be correct, I do know that joint pains can also be a symptom of Crohns, known as extra intestinal manifestations, but from my understanding just as everyone has a different experience of Crohns we also will experience different symptoms so not everyone will develop these pains. I have multiple joint problems but after investigation it is thought not to be part of Crohns. Some people have reported having pains long before Crohns is diagnosed, but I don't really know if there is any correlation as to what stage Crohns is at, I do find when my tum isn't so good that my back and hip are very sore (even though not meant to be related to tum).

Sorry if this doesn't answer your query too well but someone will be along I'm sure that can help you more. Have a good day.
 
Yes, like Lizbeth says, joint pain is a very common symptom and also mine was mostly in my lower back and my left hip, although it frequently used to travel around and visit other parts of my body! That is also very common. I'm pretty sure it was related to my Crohn's because it's disappeared since I had the resection.
 
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