Hi Heather, I'm sorry you're feeling so sick and frustrated right now. Not only are you having a flare, you're also struggling with salmonella, which totally sucks.
While I have not been in your exact situation, I too have crohns and recently had giardia, which is an intestinal parasite (the one you get when you drink the water in Mexico, though I hadn't done any travelling!). The giardia went undiagnosed for at least 6mos and was very sick during that time. Due to recent bowel surgery, my GI thought that I was having extreme nausea due to obstructions. I am very happy with my GI and have a ton of confidence in him, but I had this nagging feeling that the diagnosis didn't exactly fit. We found out later--giardia. Should've listened to that voice in the back of my head.
But I guess, what I'm saying with that is that 1) you don't have confidence in your GI, 2) he/she is not familiar with your situation, but as far as you know, has not consulted other GI specialists 3) your needs are not being met and there's a lack of communication. Remember that you do have the right for a second opinion and a fresh pair of eyes to look at you and what's going on. In my case, giardia was easy to treat and I had a lot of relief at first, then got really sick again. I thought maybe the giardia wasn't all gone. It was gone, but was having a flare and my meds had become ineffective. Change meds and feeling better. Maybe your GI could look at treating your crohns as well as the salmonella.
The antibiotics situation is confusing. It can be common practice to put someone on a generalized antibiotic before the sensitivity testing is done. But as you've had the sensitivity test, and the antibiotic has been ineffective, that's where they lose me..... Is there a test they can do to make sure that the salmonella is gone? Maybe you're like me and the bug is gone, but you're sick bc of flare up?
I'm glad you reached out, and I hope that just talking about it has helped a little. You're not alone, and the struggle with depression is a very real thing and something that probably all of us w crohns has gone through or is going through. I've had many complications w crohns but had never suffered depression til last year. I got on some meds and it has really helped. I'm not on it anymore, but I think I'd still be struggling if I hadn't sought help. If you need help, I'd encourage you to seek it out. You will make it through this one, even though it might be the longest and most difficult time you've had, you will get the help you need. You will feel better.View Thread
Hi Brandi, you're likely feeling pretty sick right now -- to go in to the doctor and have tests. I'm sorry you're not feeling well. And now diagnosed with crohns. Have you ever heard of it before today? Were you surprised by your diagnosis, or were you kind of expecting it? I'm glad that you found this community and reached out. There are some pretty amazing people here. And I think you may find that as you talk with people in your life about crohns, you will find that it is much more common than you would've imagined. Now that you have a diagnosis, you are on the road to feeling better. And you will feel better. Welcome to the community.View Thread
Hi raikage, sorry you're not feeling well. Your symptoms do seem suspicious for a digestive disorder of some kind. Have you seen a doctor? What tests have they done for you? Any time there is significant unexplained weight loss, you should be evaluated. I would hope that a doctor would order some bloodwork, stool sample, colonoscopy, possibly some imaging like a CT. Please don't let the possibility of testing deter you from seeking an answer. You deserve to feel well again. Please keep us posted on how you're doing.View Thread
HannaLeigh, I hope you do keep up with nursing school...I can tell you're going to be a GREAT nurse.
And your post -- and Jodi's-- made me laugh. Why is it that all we want to do is eat shredded wheat, lettuce/spinach, and other fruits/veggies and we're basically confined to eating junk food. While everyone else seems to be struggling to stay away from junk food and resigning themselves to eating wheat/fruit/veg!!!! So funny! Never in a million years thought I would find other people who love shredded wheat as much as I do...especially in a crohns/colitis community! Whenever I'm first over a flare and can eat more normally, I run right out and buy a box of frosted mini wheats....yum!View Thread
Hi. I hope you get to feeling better soon. I'm glad that your dr is ordering some good testing for you and seems to be doing his best to get you some answers and feeling better. The MRE that he ordered for you is a great test, a very advanced way to look at our GI tract, which can often be very difficult to image.
I work in radiology and I think imaging is great for dx of disease, etc. That said...no imaging study is perfect. No radiologist reading those studies is perfect. You can put a lot of faith into imaging testing, but not all. In my own experience, 2 months ago, I was recovering from giardia (intestinal parasite), GI ordered a CT of the abd/pelvis to see if GI symptoms were related only to that, and not a flare. CT showed some imflammation only around my ostomy site. Nothing very concerning at all. A couple weeks later, I was in the hospital. Had a colonoscopy and upper endoscopy and found extensive severe disease in the colon and moderate disease in the duodenum. All unseen on the CT scan.
I guess, what I'm saying is that imaging --especially of the GI tract -- should never replace what you feel your intuition is telling you. Surgery is not always the answer, and it won't cure crohn's, but it is also not something to be afraid of. I'm glad you seem to be surrounding yourself with good dr's. If you do have to have surgery, please carefully research your surgeon. If possible, ask a few of the nurses in the GI office who they would want. Other good resources could be people that assist in surgery recovery, such as ostomy care nurses (WOC's- if that's what you're having) or nutritionists that care for people that have had resections.
I have crohn's and have experienced joint pain as well. Usually in my low back and in my left thumb. Recently I had a large joint effusion of my left knee--very painful and I was unable to bear weight on it for about a week. Always for me, joint pain has been a precursor to a severe flare.
If you are not having a crohn's flare right now, it could be an indication of increased inflammation markers within your body that could be signaling disease. You had a flare 6mos ago that maybe is not completely resolved. I wish your doctor had done some blood work for you that could look for increased inflammation. Maybe a c-reactive protien.
Something else that I'm concerned about for you...you are having some severe symptoms. It doesn't sound like your GI dr is neccessarily taking you seriously enough. Perhaps you could have a second opinion or ask him/her to review your labs and medications to see if you could possibly try something else that could control your symptoms better.
Crohn's is a GI disease and so we see GI doctors. Here's the rub with that sometimes: Crohn's can/does affect other areas of our bodies and often our GI doctors think that if it's not a part of the GI tract, it doesn't concern them. I can somewhat see where they're coming from...but it can also be frustrating for us, because if our crohn's was better controlled, we wouldn't be having these ancillary symptoms. If you can not get an appropriate response from your GI doctor, I would first recommend getting a new one...and then perhaps also consulting with an orthopedist may be helpful. You deserve a physician that will hear you when you say that you have debilitating pain and care about getting you the help you need.
Hi, I am glad that you are starting to feel better. I have always been told that what it takes to ACHIEVE remission (medication-wise) is what it takes to MAINTAIN remission long term.
It sounds like you had a very serious flare of crohn's and through experience, I know that often though we're feeling better, we can still have active disease in our GI tract that can be damaging. Prednisone can be a wonder drug and can carry us through some rough patches, but it is definately not something you want to be on for a very long period of time as there are very serious side effects to your health with extended use.
I've been on Remicade in the past and was very very happy with the results. Out of all the meds I've been on (Azothiaprine, Remicade, Humira, Cimzia, among many others) I believe it had helped me the most. The only reason I stopped is bc I had an allergic reaction--uncommon. You will definately want to talk with your GI specialist about this, but I am pretty positive that Remicade is not a med that you do once or twice and then stop. It is a med that you will do "loading doses" of infusions closer together and then maintain dosage of infusion every 8wks.
Please take the MAINTENANCE of your health very seriously. I also have very severe crohn's. In the past, I haven't had insurance and had been off meds, maintaining the best I could with toughing it out and the occasional regimen of prednisone. I believe that I did myself a disservice and during that time, disease was permanently damaging my GI tract and now I do have serious consequeses from that. I've had many abcesses/fistulas and now a permanent colostomy. Though I am at peace with my health status, in retrospect, I wish I had found a way to better maintain a consistent remission of disease and inflammation.
Hope you find a way to keep feeling your best, whatever you may decide!View Thread
Hi Meg, I see your original post was 2yrs ago. I hope that these years have found you healthier and happier. I was touched by your post for a number of reasons. You're from SD! I live in extreme NW Iowa and have also lived in SF, SD for a few years and I still doctor there. (If you ever have to have surgery, Dr. Rolfsmeyer is the BEST.) I think your questions of physical triumph vs redefinition are interesting. There are most definately triumphs. I hope you've found many inspirational stories and perhaps had your own triumphs. IBD seems to have an ebb and flow. You will be sicker than you can ever imagine. You will function with a daily level of pain that many can never understand. Then you will have a relief of that pain and though you may not be able to run marathons or work 24hr shifts, you will find the simple joys in everything you do. I'm glad that you reached out for help through the blog. Never be ashamed to admit you need help. I'm 30 and have had a very long road with Crohns-many hospitalizations/ surguries/unusal complications. I was told I should never have kids. My little girl is now 1. I am so blessed to have her. I was very sick again after she was born and I now have a permanent colostomy. When I read your blog, it reminded me of how I felt shortly after surgery. I felt like I'd lost my life, like I'd lost myself. I was depressed. I'm so glad I was honest with my doctors about my depression and took low dose meds for 9months. It helped me to stop crying all the time. It helped me to stop that negative record that kept playing in my head. I now can see my surgery as a blessing. Do you need to start redefining who you are? Absolutely. When you got your period your first time, when you graduated college, when you got married, you redefined yourself. You will never be done redefining yourself. And only you have control over how you do that. You can choose to define yourself as a victim of illness. You could. I don't know you all that well, but it doesn't seem like you. The most inspirational person I ever met was named Roger. I worked at a place for adults with disabilities. Roger was born with Cerebal Palsey. His brain functions at a normal level but he is severly physically disabled. He can only walk on his knees, has partial use of one hand and basically none with the other. He talks using a computer on the front of his wheelchair. This man insists on being independant in his dressing (except buttons) and bathroom. It takes him close to an hour to get dressed in the morning, but he does it, by himself every day. Buzzes us when he's ready to get in his chair. He knows that because there was a complication at his birth, he was robbed of a "normal" life. And he is probably one of the most joyous people I know. My hope for you is that you can allow yourself to get whatever help you need, that you can weather the ups and downs of UC, and that you can maybe find your own Roger.View Thread