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New Here and Looking for Some Advice

Hello, I’m thindle. I’m 21 and a college student. I’ve had problems with my stomach for all of my life. When I was younger I had chronic stomach pain that almost never went away. My parents took me to many doctors to try and find the problem, but no diagnosis was ever made. These issues started when I was in the fourth grade and lasted until 8th, where I slowly became better. Eventually, my symptoms went away. I still occasionally had severe pains and other stomach issues, but I ignored them because they didn’t seem like a big issue.

During December of 2015, I very suddenly became ill. I had extreme stomach pains and diarrhea. Initially, I ignored this too, but after a couple of days where the symptoms did not go away, my mom made me go to the local clinic. The doctor who saw me said it was probably IBS, told me not to eat any gluten, to keep a food diary, and put me on dicyclomine. They did some blood work, and it showed that I was slightly anemic. Some of the pain seemed to go away, but a lot of it remained in my upper right abdomen. Going gluten free didn’t seem to help and when I looked at my food diary there was nothing I could identify that made things worse except for just eating in general.

I had a follow up appointment with my doctor and she said it looked like a problem with my gallbladder. I’d already lost some weight by then, only a couple of pounds though, and she had me get more bloodwork done. My anemia had gotten slightly worse, but not enough to be alarming. She scheduled me for an ultrasound of my gallbladder. I got that done, but the results came back ‘negative’. They didn’t tell me what for and I didn’t know how to ask. I’m not really sure how to navigate the medical system very well on my own and there is only so much my mother can do for me.

My doctor then set me up for an egd and a colonoscopy. The doctor who did those also thought it must be a gallbladder problem after I described my symptoms. However, my results came back and they said I had ulcers and that the tissue samples showed chronic inflammation. We tried to get me in for a cat scan because my doctor still thinks it’s a gallbladder problem, but failed repeatedly because the insurance wouldn’t go through. We kept trying for about a month before giving up because the insurance basically told us that they were not going to pay for it no matter what we did at the time. In the meantime, my doctor has taken me off of dicyclomine, and put me on omeprazole instead to try and treat the ulcers.

My pain has only gotten worse and spread. I’ve been having problems with headaches, I’m exhausted almost all of the time, and while I still have the specific, sharp pains in my upper right abdomen, I have a lot of pain all throughout my abdomen a lot of the time, and an ache in my back. My anemia has gotten a little worse again and I’ve lost more weight. Only a little, but it still has me worried. I’m hoping to see a specialist about the bowel problems on May 16th.

It’s very hard right now because I’m taking a lot of classes at college and the health problems are making it difficult to stay focused and feel anything but hopeless. I’m already behind because of how many classes I’ve had to miss for medical stuff, along with being a year behind in my major from changing it in my freshman year. I was going to be able to catch up but now I’m not so sure. I’m especially frustrated simply because I really don’t understand what’s going on medically. I don’t know what a lot of the terminology means and I don’t have a solid diagnosis to look into.

So far, it looks to be IBD, but it could still be a gallbladder problem. I’m tired and stressed and I’m not sure if there’s anything I can do right now but wait.

I was wondering if anyone else had a similar situation to mine or had some advice.
 
During my sophomore year of college, I became extremely ill and spent the majority of the first semester in and out of the hospital. It was thought to be my gallbladder and at one point during that time, it was almost removed. It ended up being so bad that I did not complete the first semester of my sophomore year and ended up going home to spend time away from college and the possible stress it was causing. After going to many specialists and then having a colonoscopy and egd, it was determined that I had a serious case of food poisoning and also had IBS.
Flash forward to now, the gastro that I saw in college is my doctor again almost 15 years later and has given me a diagnosis of Crohn's. I have also had my gallbladder removed due to years of problems with it. I wish there was something I could say besides hang in there and do the best you can, both medically and in school. I would say get second opinions and do what is best for you. Only you know yourself and how good or bad you feel. You can always take classes at any time and sometimes your health comes before classes, at least in my opinion. You will always be motivated to do what you love, regardless of how bad an illness may be, and if that means taking time off from what you love, you will always come back to it at some point. I hope that the appointment on May 16th gives you more answers and possibly helps you find some relief. Good luck with your medical and college journey, you will make it, just believe in yourself and your own best interest.
 
Stay positive. Are you seeing a GI? Have you had a fecal calprotectin done. That is a stool test that measures the inflammation in your gut. Keep after the doctor until you get answers. Best to you. Let us know how you are doing.
 
Thank you both for the information and support.

Sef0912, thank you for sharing your experience. Even though it stinks that anyone has to go through that, it is reassuring to know that I’m not alone in what I’m going through. It definitely makes things a little less scary. Thank you for the advice too, I’ll definitely try to get a second opinion if I can afford it and try not to let myself get too worked up about school.

Ronroush7, yes, I’ll be going to see a GI, so hopefully he can help. Are there particular questions I can ask him that might help identify what’s going on? Or at least help me understand my situation better? I haven’t had a fecal calprotectin done, so thank you for suggesting it, I’ll definitely be asking my doctor about it.
 
Hey! It's been a while since I've posted here, and I thought I ought to give a small update. My symptoms have steadily gotten worse, so I'm not feeling too great. But the hospital waived my fees and my adviser at school has been really helpful (it's looking like I'll be able to graduate on time after all!), which I'm extremely grateful for. The semester is coming to a close, so I'm hoping to get some rest in over summer break, even though I'm planning on taking summer classes.

I'm glad I don't have too much longer to wait until I can see the GI. I'm hoping to get more answers or at least more tests done that might lead to answers. I've started keeping a complete diary on what I'm eating/doing and what discomfort and pain I am dealing with, and have since the beginning of the month, so maybe that will help :)
 
Well, I was really excited to meet with the GI yesterday, but he cancelled our appointment only 2 hours before I was supposed to go in. I didn't even get a reason. Then, they immediately got me set up to meet with another doctor. At least I only have to wait two days to meet with him, but I just don't understand making me wait three months then just telling me to meet with someone who I easily could have met with months ago. I'm trying not to get frustrated or angry, but that's pretty difficult right now.
 
Well, I was really excited to meet with the GI yesterday, but he cancelled our appointment only 2 hours before I was supposed to go in. I didn't even get a reason. Then, they immediately got me set up to meet with another doctor. At least I only have to wait two days to meet with him, but I just don't understand making me wait three months then just telling me to meet with someone who I easily could have met with months ago. I'm trying not to get frustrated or angry, but that's pretty difficult right now.
Sending support.
 
Keep fighting for what you need. I just got diagnosed with Crohn's three weeks ago, and my doctor has kept me in the dark and is generally inattentive. Fired her yesterday. Got a new one lined up for a visit in two weeks.

I understand your frustration, and I hope you get things sorted out in a timely manner.
 
Keep fighting for what you need. I just got diagnosed with Crohn's three weeks ago, and my doctor has kept me in the dark and is generally inattentive. Fired her yesterday. Got a new one lined up for a visit in two weeks.

I understand your frustration, and I hope you get things sorted out in a timely manner.
I hope you get the proper care you need. Best wishes.
 
I got cancelled on again. Apparently that GI wanted me to meet with a surgeon? I'm not sure what that was about. I've been given an appointment with a different GI on June 15th so hopefully that works out. I'm not going to get my hopes up.

@MmeMagpie I'm going to have to try going somewhere else myself if this one doesn't work out. I hope that your new doctor is much better and gets you the care that you need. Being sick is bad enough without a doctor that won't help or answer questions.
 
The thing that had the biggest, and quickest result for me was going lactose free (doctors orders). This was just before the colonoscopy. Might not be your thing, but might be worth trying. I went from diarrhea every day to soft, but formed, stools in about three weeks. Even had one almost normal one.
 
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Cutting back on the coffee has helped, too. I mentioned getting off of it completely, and my husband was all, "Oh, HELL no!" because I'm a vicious little beastie before I've had my coffee. One small cup still does the trick (with a splash of heavy cream, because it has very little lactose), and the resulting "coffee poops" have been quite a bit less energetic.
 
Thank you for the suggestions! I've pretty much completely cut caffeine out of my diet since I realized coffee was making my symptoms worse. Since I used to take in 3-4 cups of coffee in a day, it was pretty difficult. I definitely need to be more careful about my intake of dairy products.
 
I went to the GI on the 15th. She didn't cancel or have any last minute changes for me, which I am immensely thankful for.
It turns out I have gastritis, which they've known since I had the egd done. I wish I had known, even though it wouldn't have helped anything. The omeprazole was supposed to be repairing the damage in my stomach, but I was supposed to have felt better within a couple of days of being on it. She thinks that I might have IBS, but isn't doing any testing or anything. She also performed a small test to see if it was my gallbladder which was causing the pain, and we're now certain it isn't.
For now, I'm being put back onto dicyclomine and omeprazole (which they are doubling the dosage of). If these help with my symptoms, I'm going to be taking them for at least the next six months, when I have another GI appointment. I'm hoping that these help out and that at least some of my symptoms go away.
 
I went to the GI on the 15th. She didn't cancel or have any last minute changes for me, which I am immensely thankful for.
It turns out I have gastritis, which they've known since I had the egd done. I wish I had known, even though it wouldn't have helped anything. The omeprazole was supposed to be repairing the damage in my stomach, but I was supposed to have felt better within a couple of days of being on it. She thinks that I might have IBS, but isn't doing any testing or anything. She also performed a small test to see if it was my gallbladder which was causing the pain, and we're now certain it isn't.
For now, I'm being put back onto dicyclomine and omeprazole (which they are doubling the dosage of). If these help with my symptoms, I'm going to be taking them for at least the next six months, when I have another GI appointment. I'm hoping that these help out and that at least some of my symptoms go away.
Hoping so also.
 
Drs and Diagnosis

Hi, in my experience when a GI diagnoses you with gastritis, despite having a history of CD, it's because they can't work out what's actually causing the symptoms.

I've been diagnosed twice in 6months with 'Gastritis'. I have some sympathy for the Drs as the symptoms of loose output, mild temp, sickness and stomach pain can cover a number of conditions. When the bloods come back with only mildly raised levels it's easy to assume it's a simple virus having it's way due to immune suppressant Humira. All of this is diagnosed without talking to the patient.

If the Docs had actually taken the time to talk to me that there isn't any evidence of Gastritis, the output is loose due to a lack of eating caused by sickness and the levels in my blood never reflect the level of inflammation that i'm experiencing. If they'd bothered to speak to I would have told them to order a CT.

Finally after I strongly suggested we do a CT reluctantly they agreed and it revealed moderate inflammation. The reason i'm telling this convoluted anecdote is to encourage everyone to question their Drs when you feel they're wrong or even when they cannot explain themselves adequately.Asking simply what the basis of a decision is can be enough to work out whether the Dr has enough evidence to base the diagnosis on.

Happily i'm back home after some conservative treatment (Humira, I.V. fluids, morphine and letting the bowel rest)and a 10day hospital stay. The treatment (minus the Humira) would probably have been the same had the original diagnosis been correct. The point is when a GI gives you a broad diagnosis like Gastritis and you have a long history of IBD it's always worth double checking its basis.

Thanks everyone for reading this:)
 
Hi, in my experience when a GI diagnoses you with gastritis, despite having a history of CD, it's because they can't work out what's actually causing the symptoms.

I've been diagnosed twice in 6months with 'Gastritis'. I have some sympathy for the Drs as the symptoms of loose output, mild temp, sickness and stomach pain can cover a number of conditions. When the bloods come back with only mildly raised levels it's easy to assume it's a simple virus having it's way due to immune suppressant Humira. All of this is diagnosed without talking to the patient.

If the Docs had actually taken the time to talk to me that there isn't any evidence of Gastritis, the output is loose due to a lack of eating caused by sickness and the levels in my blood never reflect the level of inflammation that i'm experiencing. If they'd bothered to speak to I would have told them to order a CT.

Finally after I strongly suggested we do a CT reluctantly they agreed and it revealed moderate inflammation. The reason i'm telling this convoluted anecdote is to encourage everyone to question their Drs when you feel they're wrong or even when they cannot explain themselves adequately.Asking simply what the basis of a decision is can be enough to work out whether the Dr has enough evidence to base the diagnosis on.

Happily i'm back home after some conservative treatment (Humira, I.V. fluids, morphine and letting the bowel rest)and a 10day hospital stay. The treatment (minus the Humira) would probably have been the same had the original diagnosis been correct. The point is when a GI gives you a broad diagnosis like Gastritis and you have a long history of IBD it's always worth double checking its basis.

Thanks everyone for reading this:)
You know your body better than anyone else.
 
Tommy21bn, thank you so much for sharing. So far this has been a very tiring and confusing process. I've gotten pretty used to mediocre care at this point, so a doctor telling me anything about my condition seems like a big deal. I was glad to be told that I had at least been diagnosed with something, but this hardly seems like the source for all of the issues I've been having.

If things do not get better within a couple months, I will probably have to push for a CT scan. I know that I can't keep living like this, especially while I'm trying to get an education.

Thank you very much for the advice. I hope that your treatment helps with the symptoms you've been dealing with.
 
I'm sorry thindle! I'm going through a really similar situation. I wish you the best of luck and please don't feel hopeless!!

<3

Callie
 
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