Updated: I'm frustrated.

[bcv513]

Of course it's not in your head! In some ways, I think it's even harder when you don't have a solid diagnosis. Have you ever tried acupuncture? I was thinking of giving it a try. I know they have a certain kind that specializes in digestive issues

[Deleted]

I feel you completely.
I'm not diagnosed, and I feel like I might never be. They throw IBS at me whenever they run out of ideas just so they have some sort of "diagnosis" in the chart, but they don't ever offer me any sort of treatment ideas for it (diet, meds, symptom treatment, etc). Then, the next time they get an idea they change my chart until my tests come back normal again, and then it's back to IBS. Doctors are so frustrating. My tests are always normal, but I refuse to believe that how my body feels and how I react to food is normal.

[Deleted]

Jul 1, 2013 6:49:31 GMT -5 bcv513 said:

Of course it's not in your head! In some ways, I think it's even harder when you don't have a solid diagnosis. Have you ever tried acupuncture? I was thinking of giving it a try. I know they have a certain kind that specializes in digestive issues

carrotsmakemefat, I'm so sorry you're not getting answers. IBD and IBS suck. they just do. 
FWIW, an endoscopy and colonoscopy show nothing for me, because my disease is most active in my jejunum (which is a "blind spot" for both of those). People with jejunal crohn's disease are often dx later than most others (typically in surgery) for that very reason, which is unfortunate because by that time we often see so much scar tissue and inflammation that there isn't much to salvage, and it's the primary site of nutrient absorption.  

It's pretty rare but if you really do feel like something is there and you're not finding it, I'd go with your gut (not trying to be funny here. ). Maybe you can ask your doc to schedule an abdominal MRI? that's the only kind of imaging (besides a CT but that is too much radiation so s/he will probably say no) that allows us to visualize my disease activity. I actually have an abdominal and pelvic MRI scheduled for next week to see how things are going down there.

bcv513 I'm super sensitive because things are very raw for me, so the following rant is more for me than anything else...  but my life was way easier before I had a very invasive emergency surgery, was told I have an incurable disease that can be passed on to my children, was put on ineffective medication that makes my hair fall out and increases my risk of cancer/MS/organ failure, and before I was told if we don't get me properly medicated (which insurance is refusing to pay for) I'll almost definitely have another surgery in the next five years (and will continue to need repeat surgeries). I know exactly what's wrong with me but I still don't have any answers 

[Deleted]

carrotsmakemefat

I'm going to try to make this brief because I'm at starbuck's working on a paper and don't want to get too sidetracked, but I'd love to talk more about this later if you're interested.

ultrasound can certainly be a helpful tool, but it's not quite as sensitive as CT or MRI. MRI is going to be preferred in non-emergency situations because it still has good sensitivity (meaning we find the people who have something wrong) but it doesn't deliver as much toxic radiation. ultrasound doesn't have as good sensitivity (an ultrasound will find too many abnormal people to be "normal" - 10% of people who have strictures so bad they need surgery will look totally ok), but it's cheaper and readily available.

my labs had been largely unremarkable (I had a full physical in fall 2012 and had weekly bloodwork done for anemia in jan '13), up until the day I landed in the hospital (2/16/13). aside from anemia, I've never had a chronic health issue and had never even gone to the hospital. my white blood cells and immunoglobulins (antibodies) are off now, but that's because I'm on immunosuppressants.

labs are good and all, but I don't think they're good diagnostic indicators of IBD. and at most, they may tell you that you have chronic inflammation somewhere... but if you have crohn's, that could be anywhere in the GI tract. knowing the location of disease activity can be important for planning treatment, determining prognosis, and tracking changes.

I'm not saying you have crohn's. and if you're tired of fighting this and just want to give yourself a break, please know that is totally ok. but IF you feel like this is not the end of the road right now, then I would suggest that you *demand* imaging. personally, I'd want an MRI, but I'd settle for an ultrasound with contrast if my doctor wouldn't agree to the MRI.

good luck and please keep us updated.

[Deleted]

hey, only you know what decision is right for you.

good luck!

[centralperk]

I'm sorry you're dealing with this, carrots. I'll try to weigh in with my 2 cents, as someone with Crohn's who is also a med student.

Like tacom said, the only real possibility left is that you have disease somewhere they can't see with a scope. If that's the case, then an MRI would be an option, as well as a pill cam (where you swallow a pill and it takes pictures as it travels through your entire intestinal tract).

FWIW, when I was diagnosed, my labs were pretty normal. My CRP was a little high, as was my white count. But they weren't through the roof or anything, even though I not only had active intestinal and perianal disease but also a lot of systemic manifestations. However, they did run a fecal calprotectin, which was super high. Have you had that test done? I think it's unlikely it would be positive considering your colonoscopy biopsies were normal, though.

That said, I just wanted to add that IBS *can* be really bad. It can make people really sick. I know it must be really frustrating not to have a diagnosis, but like tacom said, it is a GOOD thing you don't have IBD. It sucks, and you have it for your whole life, and it can cause all kinds of horrible things in the future.

I hope you can figure out what's wrong. But even if it's "just" IBS, that can still cause a lot of terrible symptoms, and there are symptomatic treatments you can try. IBS isn't just a little diarrhea/constipation, it can be really hard for some people.

((hugs)) and let me know if I can help in any way!

[Deleted]

Jul 5, 2013 7:20:06 GMT -5 carrotsmakemefat said:

Update - doctor said he would give me the pill camera (says it is better than an MRI). I wont get that until early AUG so more to follow.

He also gave me samples of yet another drug, urgghhh.

At least I can rest easy once everything comes back normal and I know there is nothing left to check. Then I can move onto a holistic approach and figure out how to manage these damn pains.

No more updates forthcoming for awhile. I don't want to focus on this, at least for the next couple weeks

I've been thinking about asking if the pill camera is an option for me. I don't see my new GI until early August, but I think I'll bring it up then.

[Deleted]

Jul 7, 2013 8:51:10 GMT -5 carrotsmakemefat said:

pixie, I would absolutely ask! Thinking about this more I think investigating the small intestine makes very good sense, especially since that is where food absorption is. I just wonder if an MRI would be less intrusive though? Does it require a prep like the pill cam does?

I am wishing tacom didn't deactivate

I also notice I get pain near my scar from my gallbladder surgery, but I got to think that is just a coincidence.

I've never had an MRI, so I'm not sure what the prep for one is like. I think it depends on what they're looking for and where they're looking. I can't wait for my PCP appointment on Friday. I have been so, so sick for the past few weeks and I just want something to help with the symptoms! I'm exhausted from the stress of functioning while my body is trying to tell me to lay down.

Confession: I've started researching work from home options, but I'm struggling with wading through the scams to find legitimate options. I don't know that I even have a chance of finding one since I haven't even finished my degree yet, but being out of the house for 10+ hours per day trying to stay on top of my game with the amount of pain/nausea/bathroom time I'm having is just draining me.

[centralperk]

You have to drink something before the MRI. It was gross, but it's nothing like a full clean-out for a scope. The pill cam can show you what the surface looks like, the MRI can't do that. The MRI can show you other things though, like if the intestinal walls are thickened. I think a pill can sounds good but maybe you can talk to your dr about the options.

[savan]

Lurker here but I wanted to add DH's story because it sounded similar. Years ago he started having these horrible abdominal attacks. They consisted of fever, severe pain, inability to keep anything down, etc. The first time it happened he went to his PCP who gave him a course of flagyl and told him it was a stomach virus. 6 months later he had another one. This time I took him to urgent care. He had elevated white blood cell count so they did a CT scan and transferred him to the hospital. There he was told her likely had ulcerative colitis due to the inflammation they saw on the scan. He spent 2 nights in the hospital, receiving another course of flagyl.

He had a follow up with a GI doctor who did a colonoscopy. The results were normal. Meanwhile, he continued to have varying GI symptoms, diarrhea, constipation, pain, etc. A year later he had yet another attack, another scan which showed inflammation in the small intestine this time, and another hospitalization. This time they were sure he had Crohn's. Once again he made a quick recovery after a 2 day course of flagyl. This time the doctor ordered an upper GI and small bowel scan, along with celiac testing. The results were all normal. DH was increasingly frustrated.

Fast forward another year, another attack, and another emergency room visit. We had moved across the country so he was referred to a different GI doctor. We brought along all his records and history. She ordered another colonoscopy. Again, it was normal. She told him his last option was the camera pill but our insurance would not approve it so it never happened.

DH has basically learned to live with (ignore) the symptoms. He knows that he needs flagyl during an attack and gets to the doctor as quickly as possible. He has also gotten really good at anticipating them. He will immediately switch to a clear liquid diet for a few days to lessen the symptoms. In between attacks he has other issues that he just deals with. I can always tell when he's having a bad stomach time because he also breaks out in neck lesions.

All of this is to say that I can understand how frustrating it is to not feel good and yet not have anything to show for it. On the one hand we are happy that DH's tests never showed crohn's or UC. He hasn't had to take steroids, have portions of his bowel removed, or other invasive treatments. But we also wish there was something out there that would stop the symptoms.

I am very curious to here how the camera pill works out for you. I may convince DH to consider that option again.