My name is Brandi and I recieved a call from my dr yesterday telling me that my biopsies came back positive for Crohn's disease. I am really not sure what this will mean for me right now or how we will have to treat it. I go back for my follow up next week to discuss all this but I just wanted to say hi and hear from some others who are dealing with this issue.
Hi Brandi, and welcome to the site. Sorry to hear about your diagnosis, but if you're like many of us, it comes as somewhat as a relief. While is it a life long illness, at least you have an answer and it isn't cancer. At least that's how I felt. Hope you can find all the help you need here. Let us know if we can do anything.
Getting a Crohn's diagnosis is sometimes hard and like you said so many people try to convince you that it is all in your head. In my case it took a gall bladder surgery, two doctors and over a year before I got the diagnosis. My husband new something was wrong because my symptoms were so bad. He once made the comment, " Let's regroup before they take out any more body parts." Referring to my gall bladder surgery. I did feel as if some family members and even docs thought I was making it up. It took a year before I saw an actual gastro doc and he had my diagnosis within a weeks worth of test. And within a couple of months I was under control and feeling like a new woman. I have had this diagnosis for over four years and me probably being lucky have had great success with staying in remission with meds.
Good luck! And life can get back to normal, just maybe with the help of a few meds!
Wow, thankfully I haven't had any surgeries yet but I do hate it when doctors make you feel like its all in your head. I originally started having problems 4 years ago and my stomach pain was so severe that I would have panic attacks because of them, which didn't help. But I was refered to a specialist and he did an EGD and some other kind of test that I don't remember and basically told me I had the stomach flu and it eventually went away after a while. So this time when it started I thought that maybe I could just tough it out and deal with it till it went away but I started having blood in my stools and that scared me enough to find a different GI doctor to talk to.
It is frustrating that before people thought it was all in my head and now they act like its the end of the world and they feel sorry for me. I mean I know its not the greatest news in the world but I am thrilled to know I am not crazy.
I went undiagnosed for most of my life, my symptoms actually go back to when I was very young. I was even told I had adult colic at age 31. After I was hired at a job with health benefits I was diagnosed and had a GI that did not help me much. I did finally find a wonderful GI that understood me and LISTENED to me as I feel this is a big part of treatment, to know how YOU feel and not lump you in with everyone which this is different for every person. We all have "rough" patches but that is what the support groups are for, a shoulder when you need one and someone who can relate to what you are feeling. Please know that life can be "normal" again but may take a little while so be patient and really "listen" to your body. Here whenever you need someone I love this site. Has really helped me during some scary times. Prayers for you and please keep in touch
I am sorry that it took so long for you to get diagnosed, to me the worst part really was not knowing.
I also wanted to say thank you so much for your encouragment and prayers! My wonderful husband desided to blurt out the diagnosis at our prayer meeting at church wednesday and I was approached with alot of "they could be wrong" and "I am so sorry" and it really frustrated me. I am not dying and honestly I am not scared of it, I am not upset, I am not happy about it but I know who is in charge of it all and that He has a plan for me. I am just ready to see what the next step is.
I will say that I am also blessed to have a doctor that is interested in what is going on in my life and not just the physical problems.
Sounds like you have the right attitude and that will help you immensely. You're right it's not a death sentence. When I was diagnosed 3 years ago I was terrified and had so many questions. This community is so supportive and offers great advice and information that has helped me. I also attended CC monthly support group meetings. I too have learned, the hard way, I might add that patience is key. Having a great GI is a good start. All the best
Today is my first appointment since they called and gave me the diagnosis and I am a nervous reck! I am anxious to see what we need to do to treat it but a little bit scared to. I had a bizillion questions to ask and now I can't think of any of them. What were things you all asked?
How did your appt go today? I used to go in with a million questions for my doc and would forget so now I find I write them all down and enough detail so I can remember what exactly I was asking about. I was very happy to see that my new GI actually asked if she could write on the piece of paper and she actually checked them all of to make sure we addressed all of them.
I am so happy to hear that you are proactive about your diagnosis and ready to begin whatever is needed to feel "better". I think with your outlook, patience and research you will do very well in your new Crohns adventure. ( I look at it as an adventure that only a person with Crohns can explain.)
If things seem rough for your husband because of questions or not knowing how to help you, let him know about these sites. They are great for family members too. If he has a question, have him throw it out there and it might help. It's something the whole family adjusts too, not just the person with the disease.
Thanks for asking CountryMomma, it went well. Although my dr said that even though the biopsies came back possitive for Crohn's disease he thinks it may be ulcertive colitis instead because of where the inflamation was, so he is sending me for another test but also gave me prescriptions for Asacol, prednisone and another med that is supposed to protect my stomach from the prednisone and said that the insurance might take to long to preapprove this other test so I could start taking the meds if I needed to but he would rather wait if possible.
So I am still waiting for a definite answer as to what it is but at least we are getting closer and I know that I have a great dr who actually cares about his patients and is dedicated to getting the correct diagnosis. I have however learned that I should stay away from lettuce because the last few times I have eaten it I got extremely sick.
I'm not saying that you do because it is very rare, but if your inflammation looks like UC and it's coming back positive for Crohn's, you may have what's called Crohn's Colitis- both. This was the case for me and I had three GI doctors tell me there was no way because it was way too rare. I was sick for many years because they would treat one disease and it would get better while the other got worse, so they would change my diagnosis and start treating me for the other, letting the first one take back over. A lot of the treatments for the two diseases are similar, but I didn't respond well to most of them.
Lettuce is a bad idea with IBD generally. I can't digest it at all. I also can't digest olives, tomato skins, nuts or seeds of any kind, and some pastas... Like ramen noodles. No celery or most other types of vegetables either. I still eat them on occasion, but I know it's going to hurt. Has anyone told you about a low residue diet yet? It's what doctors generally recommend when you have GI inflammation going on. You should be able to google it and find out some suggestions on what to eat and what not to. Low residue is pretty well standard for most IBD patients. The one discrepancy I have with it is that I do fine with milk (in moderation) but a lot of patients don't.
If there are any questions you have at all, I'd be happy to try to answer them. I've been in this game for a long time now, unfortunately. I'm also in nursing school and we're going over IBD in class, so I've been teaching it to my classmates (and some to my teachers).
Its kind of interesting to know that you can have both. At this point like I said I am just ready to know where we go from here and get started with treatments. I am ready to feel better.
I actually had no idea that lettuce could be bad for me, I always loved eating salads and putting tons on my sandwiches and burgers but I guess I need to stop that. Just curious but have you notice a difference in how you digest different types of lettuce? I had some romane a few weeks ago and it didn't bother me but the iceburge lettuce I had last week was gonna kill me I thought. I haven't heard of the low residue diet before but I will definitly do some research!
Thing that worries me is how I am going to work this in with 2 fairly picky kids (one of which eats almost nothing but raw veggies) and a husband on what was already a pretty tight budget.
Have you found anything that helps settle your stomach? I have been really nauseous having stomach pains and wondered if there was anything aside from taking the meds before my test that would help. The nurse said that my insurance company has taken up to 3 months to get this test aproved in the past... I am hoping they don't take that long this time!
Well I got my capsule endoscopy test done yesterday and started with prilosec, asacol, and prednisone this morning. Yesterday was pure missery, I guess the prep really irritated my already unhappy digestive system and made things horrible. Thankfully today it "seems" to have passed and I am feeling much better! I am hoping this means these meds will do their job and work for me. I still have to wait about a week for my dr to call back with the results from the test to see if it is Crohn's, Ulcerative Colitis or possibly both. Here's hoping all goes well for the next couple of days though since I will be heading out Friday for our church ladies retreat to Falls Creek.
I realized many years ago that I had terrible pain from eating even very small pieces of iceberg lettuce, but not with other types of lettuce. It was determined that iceberg lettuce causes severe inflammation in my small intestine. From a nutrition standpoint, iceberg lettuce has no real nutritional value, there is no reason to eat iceberg at all.
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