Anyone else like me?

I just don't know what else to do. I am trying to stay positive but it is so hard because the doctors and my GI are telling me my abdominal pain and severe pain after eating is not crohns or the xrays for doesn't show active crohns. I have posted on here before but I mainly read and post back. I am in the health care profession myself but this doesn't help me a bit get through to my GI on the amount of pain I am in. My current flare ( this is what I call it) started about 2 months ago. I have been in the ER/hospital 3 times with admission twice for dehydration and pain control. My symptoms are intermittent abdominal pain around the belly button with sometimes different pain severities and feelings. The last admission I felt as if I had a partial obstruction because no stools for 2-3 days (I go diarrhea atleast 3 times daily normally), pain bad, and swollen tummy. Now I feel bloated again but diarrhea, crampy, weak from not eating much. I hurt probably because I tried to eat last night. They did tell in last admission that scar/adhesion tissue doesn't show up on CT scan. I have had 2 resections. Neither seemed to do much good for more than 3 months. I have IBS they think. I feel the pain is worse than this but on no med for IBS just IBD. On Humira. Also have IC but not active. ? endometriosis but pain not in that region. Pain really feels like crohns. Have lost 101bs in 2-3weeks because can't eat without pain except grilled cheese sandwiches. This doesn't make since either. CRP was high initially but at last admission it was normal. WBC is elevated which shows infection but this has been elevated since July 11? Can anyone relate? I am so miserable. I don't feel like doing anything but sitting around. My family is suffering with me. I am going to Duke Univ. Hospital in NC which is top rated. I am doing all I think is the best. I think despression is sitting in. I am so glad I have this forum because my husband doesn't understand all of this.

Gumby44, I have asked my GI and hospital team about a camera test but they don't listen to me. I have never had one in all my years. I have had a colonoscopy about 11/2 yrs ago and just the CT to be recent. I threw up when I tried to drink contrast so they did the CT just with the IV contrast. I had a small bowel follow through a couple of years ago. It always finds something. These are the only things I ever have besides a bariam enema. Was the stricturing in your ileum from inflamation or scarring? I hate you are also going through this stuff during the holidays. I will try to look at your previous postings. Good luck for you. I see my GI Jan 9th. She is at Duke but I am really wondering if I should switch not only because of this episode but others as well. I have been sick with no complete remission for along time.

My first bet on what you may have is: either a big inflammation, making the intestine narrowed in a certain area, or a stricture / scar tissue making the food you eat hard to pass the narrowed part, giving you obstruction pain. If this is the case, you would not use camera to find out what's wrong. Using a cam in the mentioned suggestions would certainly lead to a surgery to get it out again. I hope you'll soon figure out what's wrong. Good luck//BEE.

i feel just like you!!!! my lastest colonoscopy (3 weeks ago) showed active crohn's but still in the same place as last winter. The GI Dr said he could not understand why I have so many bouts of "D", weight loss, loss of appetitie Ect Ect....i have been telling him that my pains, while not bad are further up, but he wont do the pill due to too high of risk for surgery if it gets caught on something. I live in NC as well, and i have been seen at the GI clinic at UNC Chapel Hill, they only added methotrexate to my remicade which i have since had to stop. the interesting thing to me is that i have gut malrotation (proven with CT scan and resection surgery) but the GI and my GP both dont seem to think that this is playing into my issues. I am thinking about going to Mayo, cleveland or duke.......I am tired of being sick.

Thank you all so much for your comforting remarks. You don't know how much you have helped me tonight. I just feel so alone here at home and this forum is all I have when trying to talk about my illness. This stupid crohns has dragged on for so long now. Nanners thanks for always being there and for your experiences and kindness. I am going to ask about the patency capsules. Mirowpl, I do go to Duke, Dr. Wilson and I am not very impressed at the moment. I have been thinking about going to the Mayo Clinic myself but have children at home. But if they would solve my problem or at least help me it would be worth the time apart for all of us. Have you been to the Duke's ER? I have been admitted from ER over and over with no luck in treatment just pallative care. Gutsy, I don't understand why grilled cheese sandwiches either. I really think I have a stricture because of the pain after eating. I have been able to eat a little more the last couple of days but still hurt a little. Taking oxycodone as needed. Thank you all.

Wow chiba, you really know your herbal stuff ! Spot on. I thought it was only me knew about these sorts of arcane facts. But you know, you are supposed to use a period or colon etc wherever you would draw breath saying it !
(Don't tell me - you are short on colons, you had a resection ? )
My humble input is this RxCrohnie: I have a theory about the grilled cheese sandwich.
I am dairy free, but once upon a time I fell off the cheese wagon...and no ill effects resulted.
I knew that I'd had problems with cheeses before, so why not now ? I researched the ingredients: the key it seems is annatto. This is a tropical berry used as colouring in cheeses; in the UK it is always mentioned under allergy information because it is associated with headaches in some people. But actually it is also known to have anti-inflammatory properties, and it is actually used as a herbal medicine in the tropics. Turns out, any cheese without annatto makes me ill PDQ, if it has annatto I have to eat a lot to suffer any.
This theory gets blown out of the water if you are eating gruyere, (non-cow's milk is a different game) but hey, worth mentioning ?
Rxchronie, the desperation you are feeling is common to all of us when we experience a flare. The first thing that happens is your body's ability to make neurotransmitters is compromised - 50% of the total amount are used in the gut - and so depression results very quickly. It's not you not coping, it's the way the illness makes you feel.
We've all been where you are, it's a grim place but just by the law of averages things will improve in the end, and now you have our experiences and mistakes to help you. Remember you are not alone, and this too will pass...