Hurting & feeling icky for years, horrible GI

Hey y'all!
I've never posted here before, but I'm at my wit's end and have been putting off calling my GI because I don't like their office and I hate how the soonest they ever make appointments is, like, three or more months away.

Anyway. I don't have a Crohn's diagnosis, but it's something that doctors have suspected I might have since I was 13 (I'm 22 now). They said they'd want to do a colonoscopy, but I was sexually abused as a kid and have some pretty strong boundaries so I noped right outta there and never went back (+10 for maturity?). Honestly I still wouldn't be comfortable with one (especially at my GI's office, where they drugged me for an upper endoscopy after I explicitly told them not to), but Pill Cams exist now, and I've been meaning to call my GI. I just hate that whole place so much, and I don't believe there are any other GI clinics in my city. I've been feeling horrid for ages, though, so I'm thisclose to just biting the bullet and calling them to set up an appointment in something like December of 2020 (hyperbole; they're just always sooooo booked).

I was casually diagnosed with IBS and some gastritis, because the upper endoscopy came back quite normal. We were actually looking for celiac at the time, but we know I don't have that now. My GI's NP suggested following a FODMAP diet, but I'm vegan and I don't really want to live on, like, lettuce. We did an antibiotics course for H. Pylori, which made me feel crazy sick and did precisely nothing good for me.

My pain is usually on my left side, almost like a side stitch but more widespread. Sometimes I get twinges elsewhere, but I have (suspected) endometriosis, so that explains most of the twinges. I constantly feel bloated and rumbly, but I'm usually constipated (it seems to be mostly C with an occasional smattering of D that I always wish would stick around so that I could at least feel like I got everything out for once, you know?). I've had doctors mention that they can feel hard stool just hanging out in my intestines via feeling my abdomen, and it doesn't seem to change. I have bleeding sometimes, and I've had it since I was 10. I love eating salads and fresh food, but it seems that they give me wicked cramps. My parents are always on my case about eating a lot of white bread and noodles, but at least they don't make me hurt so much

My mom has colitis, and she doesn't have any pain nor does she experience difficulty with fiber, so she has concluded that my problems are all due to drinking a small amount of soda (which I don't do too much, because of the carbonation and gas pain), and that all I need to do is eat more fiber and I'll be okay. She basically said that she doesn't want to hear me complain about any stomach problems if I'm not eating oatmeal and leafy greens. She basically lives on oatmeal and spinach - not entirely, obviously, but she eats them every day - and she's completely convinced that all of my digestive issues are down to not eating like she does. She does this a lot. My left hip currently needs surgery, and she resolutely refused to believe that anything was wrong with it literally right up until I showed her my x-rays and diagnosis after she finally "let" me make an appointment with my orthopedic doctor. She STILL tells me that my hip would be fine if I just did more physical therapy, even though my physical therapist herself says I need surgery. So that's my mom's level of compassion for this stuff, lol.

My grandfather on my dad's side had Crohn's, but I don't know anything about his experience because he died before I was born.

My digestion has been whack for years. And even before my digestion got really crampy and weird, I was having bleeding and inconsistency, hence my then-GI wanting to do a colonoscopy when I was 13. I also had a hemoglobin level of 9.8 or something back then, and felt exhausted all the time. I feel so exhausted all the time right now that when I went to the uk over the summer, an eight hour time difference, I didn't even feel any jet lag, because I'm THAT tired all the time.

My doctors have been trying to work out what's wrong with me for ages, with little success. First we looked at Lupus and RA, because I have a lot of joint pain and general autoimmune-type issues (fevers, chills, poor immune system, traveling joint pains, eye discomfort, new allergies, new asthma), but we didn't find them. I had tests for H Pylori (positive) and Celiac (negative). We looked into cancer for ages, lymphoma, doing several CT scans, a biopsy, and a PET scan, which then ruled cancer out. Everyone just sort of gave up - like "well, something's wrong with you, but only God knows what". But I started wondering if it was Crohn's, since I have every symptom, I was already almost tested for it nearly ten years ago, and it runs in my family. I was put on a short ten-day course of prednisone for my asthma, and my god, it was a godsend. I felt so much better in every single way, save for the wicked acid reflux it caused. I know prednisone is awful for a lot of people, but prednisone awful is much better than my regular sick-feeling awful, if that makes sense. I'd rather be on steroids than nothing, but without a solid diagnosis, no one's gonna just put me on prednisone for kicks and giggles.

The problem is mostly just getting in to see a doctor, and trying to get my mom to take me seriously. It's almost like she thinks she's the only person in the house allowed to have IBD. My parents still pay my bills, because I'm in college and my part time job doesn't cover much. My dad is pretty chill, but after so long of me being sick and doctors not knowing what it is, both of my parents have pretty much reached the conclusion that nothing much is wrong, and I'm just overly sensitive. My GP has the same philosophy - not just with this, but with everything. She told me my hip was just a muscle imbalance and very begrudgingly referred me to the ortho who found the real problem and worked out that I need surgery. It's so exhausting having doctors and family treat me like I'm just hysterical or overly sensitive, and I feel horrible. I'm in digestive pain every day and right now I have almost no appetite, because I just hurt and can barely get anything out, so to speak. It has me wondering if I might have a stricture, since the pain is almost always in one specific place. But even if I do have one, I can't find out quickly, because my GI'a office doesn't do ANYTHING quickly.

I'm just not sure what to do. I feel awful every day, but everything around me is stalled. Getting my parents to pay my co-pays is enough of a fight, and no one seems to understand what I'm going through - not even my mom, who has UC. I'm at a loss. Any advice or wisdom would be much, much appreciated. Thank you x

Thank you!
Are you sure that they need biopsies, though? I'm certain I've heard of people being diagnosed via pill cam if it looks IBD-ish enough in there, especially for people my age. Maybe less so for older folks who might have polyps and other age-related risks of colon cancer and whatnot so that they can be sure it's really IBD, but for young people?
I do see a therapist and she's excellent. I'm actually 100% better on all of the psychological stuff except when it comes to invasive medical stuff like that. TW - I was also raped by a doctor a few years ago, so, uh, that complicates things. Sorry to make this so depressing lol but yeah, it's complicated. Outside of the medical realm, I'm super healed and happy with everything. Funny how it works.
I have pain all over and also on my right side, a little lower than my left side pain, but it's worst on my left. I know Crohn's can also be centered in the colon, and it's also more likely to bring the systemic issues like joint pain, fevers, chills, eye pain, et cetera, but idk.

Right - the capsule endoscopy is for looking at the inside of the small intestine, not the colon. It's generally only ordered by GIs and only approved by insurance when there is clear evidence of something going on but only *after* a colonoscopy comes back clear. Even then, they'll often want to do an MRI before the capsule endoscopy.

But before doing or considering a colonoscopy (or flex sig), what blood tests have you had recently? Any signs of anemia? Have you had CRP or ESR checked in recent blood work? And have you had stool tests done? To look for blood, to check levels of fecal calprotectin?

If any of those come back high, it's good evidence that *something* inflammatory is going on, in which case a colonoscopy is appropriate.

If all of those come back normal, you might still have something like UC or Crohn's, but it's less likely and docs might be less inclined to order a colonoscopy.

But, yeah, in general, for IBD testing, they start with blood and stool tests, then a colonoscopy, then perhaps an MRI, then perhaps a capsule endoscopy in very limited cases.

Anna, since you are having issues with constipation I suggest you look into adding a stool softner. I see a lot of people using Colace, it is not a laxative so it will not send you running to the bathroom. Constipation can also cause bleeding & hemorrhoids.

As the above members stated, a colonoscopy with biopsy's is how to get a proper dx. I think if you explain to the gi office your fears they will book you with the female dr.

Take care.

You really can't get a Crohn's diagnosis without the biopsies from the colonoscopy. I doubt insurance companies would pay for the medications for Crohn's without it. I'm so sorry for the trauma you have been through. If a female GI helps you to feel more comfortable, you should definitely do that. The doc also might be able to give you an anti anxiety medicine like Xanax to take just prior to the procedure so you feel more relaxed before being put out with the sedative for the colonoscopy. I do understand your fear of loss of control with the sedative. But you allowed them to give you anesthesia for the hip surgery right? It's not all that different.
My daughter had to have a colonoscopy when she was a teen-ager and she has no trauma history, but hated the idea that she would be talking while under the Versed but have no control over what she said. I get how that would be really triggering for you. General anesthesia has higher risks so I'd be surprised if they would offer that to you.
I think you need to work with your therapist and doctor to come up with a plan that you can tolerate. You might not have Crohn's disease but instead bad IBS, but you can't know that until you do the testing. Starting out with blood and stool tests is a reasonable idea, but it won't give you a definitive answer. Sorry you are going through this.

You can opt to get a colonoscopy without drugs - it just may hurt, especially if you have any active inflammation from Crohns or UC. For my first colonoscopy when I was about your age, I asked for light sedation and was in and out of it during the procedure - there was pain but the drugs they did give me helped. I would suggest finding a doctor you trust. Be open about your fears and work with them to develop tolerable action plan. Unfortunately there’s very little help you can get without a formal diagnosis, which includes Crohn’s medications but also medications to help with the pain, bloating, and constipation. It seems these days if you don’t have a verifiable medical condition, getting medical support is tough.

Scifigal - I'm so sorry you've been through similar things. It sure does make everything tougher, doesn't it? Thank you for your kind words and suggestions. I hope you've found healing and peace too.

I think it is safe, it's just not commonly done because most people prefer to be out of it, and sedated patients are easier for doctors to deal with. In other countries, sedation is less common. Although tbh, I'd be okay with sedation so long as it's with Ativan or something like that, rather than Versed.

I'm going to call my GI soon, but as my parents pay for my health insurance, it's a matter of convincing them that I "really need it" first. The fact that this condition has been suspected in me for almost ten years should really have them already convinced, but here we are lol. I literally look three or four months pregnant from bloating right now, it's suuuuper cute /s

One thing I do remember (although that's assuming I'm remembering correctly - I can't find the report) from my upper endoscopy is that I had some wall thickening in my stomach. It was diagnosed as mild gastritis, but acid reflux medications never really help. They help with the intense burning that I sometimes get higher up, in my chest and throat, but no course of Prilosec or continuous taking of Zantac has ever fixed the problem. It never gets better, and it actually seems to be getting worse, I feel like I'm having more of those awful acid burp-vomit combos. Usually they're just unpleasant but they're actually starting to hurt. My stomach (or rather, general abdomen with the worst on my left) has been hurting so much that it's often hard to concentrate in class. I'm just tired of putting up with it, you know?

I understand you being on your parent's insurance. However, is there a reason you cannot make an appt on your own & go see the female gi dr? You are of age that you can schedule & see a dr without your parents permission.

If you are tired of putting up with things as they are, that is even more reason to get some answers & figure out exactly what is wrong.

Take care & good luck.

The medication doesn’t cost me anything because my parents insurance pays for it but I think for the actual price without insurance is around 300 dollars. I didn’t even think to think prednisone would make my reflux worse until you said that. Mine has been super bad this year and I’ve been on pred the whole year so that makes sense to me. The dexilant was prescribed to me by my old GI but my new GI told me I needed to stop taking it so my body could absorb calcium and vitamin d capsules, I hope that’s only until I can get my dexa scan though (to make sure pred didn’t cause me to get osteoporosis) because none of the over the counter antacids work for me. But yea reflux can be a killer, and comes at the worse times.

Oh, okay. That would make my copay like $60, which isn't bad.

It probably is the prednisone! It gave me the worst reflux I've ever had, definitely worse than normal. I was going wild trying to stagger different antacids to try and combat it, and that was with a prescription one as well.

I have good insurance through my university, actually, that's how I'm getting insurance that costs about $180 a month with a $3000 out of pocket cap instead of my previous non-university insurance that was $340 a month with a $7000 out of pocket cap. Coupons don't always work if you have insurance, because they're mostly for uninsured people, but since my insurance covers my prescriptions pretty well I assume it would cover that too.

For the calcium and D, can you get them via infusion so you can stay on the antacid? Idk about you but I'd personally rather have needles stuck in me than get prednisone heartburn every day, it's brutal.

Yeah, she should ask her university's health center/look online! I had no idea that I could get insurance through school and it was so amazing to learn that I could.

Good luck with your next six weeks!

Currently I'm in the After-Food Bloating Pregnancy Tummy Imitation Contest, and I've just learnt that there's a word for one of my most annoying symptoms, tenesmus. I'm constantly feeling like I have a stomach flu and I've gotta go now now now and then I get there and it's nothing, or nothing but mucus. It's trash. It has me on edge all the time tbh and it feels like my own body's just messing with me. It seems like such a small thing but it exhausts me and I feel so jerked around. I'm also in so much pain and inflammation and such that it's hard to avoid foods that I know make it worse (fresh veggies, oily food) because it's just so bad no matter what. Sigh.

My parents said today that they don't want to pay any of my co-pays or co-insurance because they aren't convinced that I need my hip surgery OR my GI care. They think I need to "try harder" by exercising on my disfigured hip and eating tons of fresh fiber for my GI stuff (fresh veggies, whole wheat bread, etc). Literally the worst things I could do. And I'm like, I have a part-time minimum wage job, how exactly am I supposed to pay for anything? I don't have the remaining ~$2,000 of my out of pocket cap. I feel so stuck.

Right, it's so annoying! My mom's talked about her symptom of urgency before, but I'm like, bro, I have the same feeling all the time /but then there's nothing there/. No relief. I've learned to mostly ignore it tbh because, like, I have things to do. But it's terrible to spend so much time feeling like that.

I remember when I had my upper endoscopy, my GI prescribed some kind of medication that's supposed to help with bloating. I didn't keep taking it because I swear it made things worse - if I remember correctly, it's a medication for IBS-D, and I feel like it made me bloat more. The IBS meds do nothing, the H. Pylori antibiotics didn't do jack heckin' squat except make me bedridden for two weeks and give me a psychological inability to swallow capsules after all of the antibiotic capsules made me so ill - literally if I try to take a capsule now, my body spits it back up. I barely even have a gag reflex at all (I was born three months early, before the reflex develops) but I can't swallow a simple capsule! It's wild.
Probiotics give me cramps (but I keep meaning to try them again; they seem worthwhile). Beano makes me throw up every single time I try to use it. Prilosec, Zantac, and a few other antacids can sometimes help with short-term reflux but nothing has ever, ever solved the problem, or prevented it.

It's tiring because I feel like I've tried everything. IBS meds, antibiotics, probiotics, Prilosec, gas-x, beano... The only medication I've been given that made me feel more like a person, body-wide (less joint pain, no night sweats, calmer stomach save for the reflux, better lungs, much more energy, just better in every possible way) was the prednisone.

Meanwhile, my parents are convinced that I've tried nothing, because I won't do their weird diet ideas. My mom really SHOULD understand, but she eats salad every single day at lunchtime and has no problems. She maintained remission for over a decade on Asacol HD and is now trying something else after the Asacol finally wore off, but has never needed immunosuppressants or surgery of any kind. I think, although I'm not sure, that she's pretty lucky in terms of IBD burden.

My grandfather was really sick and actually never had any treatment whatsoever his entire life, right up until shortly before he died. Complications from the Crohn's is what got him - sadly before I was born, so I never met him. One of my cousins has been very ill for a while, with constant nausea, vomiting, and weight loss, but they don't know what it is. She had her gallbladder removed and I believe she had both upper and lower endoscopies, all normal, but I don't know if they did a pill cam. She's in the UK, as are most of my family, and some newer tests aren't popular there yet. As another family member with GI issues from hell, I wonder about what's going on with her. I empathize with her a lot.

I do eat fairly simple food. A lot of bread and pasta. Cream of wheat seems to agree with me well enough, so I eat that with peanut butter and brown sugar a lot.. I love vegetables (which is good, since, you know, vegan) but I mostly eat them cooked since salads make me hurt. Although really, most things seem to do that. I had mushroom barley soup for dinner, something that shouldn't be a huge deal, or so I would have thought, since it's soup, but my stomach's threatening to take over my body, lol. I've always been on the thinner side of average, albeit curvy at the same time (finding clothes is the worst), and having my stomach protruding like mad after most meals gets really annoying. I'm wearing a crazy loose shirt and my stomach is actually pushing it out, it's incredibly absurd.

I requested a patient portal ID from my GI's office so that I can at least log in and email them about what's been going on. I think if THEY say they want to see me, my parents will get over themselves. I think they're just tired of me having had so many medical tests that lead nowhere. After my PET scan showed that I, in fact, did not have lymphoma, and my oncologist was like, "something is wrong but it's not this; it's probably autoimmune, good luck", my parents were like, lol, obviously she's dramatic and reading into her body too much, she's probably healthy and needs to calm down. I mean, I'm paraphrasing, but that seems to be their attitude. My dad is usually much more understanding and nice about anything and everything to do with me (my mom is very loving but we just don't get along very well sometimes), but even he doesn't get it :/ thank you for your sympathy, it's actually very helpful and validating I hope you're doing well too!!

A lot of times changing too many things with the diet can trigger unpleasant side effects. My son's wife suffered several years with IBS. She tried everything in the world & was very sick a lot. She finally got a good dr that worked with her & she saw a dietitian that was most helpful. There are medications out now that can help people with bad IBS.

Without proper testing such as the scope with biopsy's I don't like telling someone they have this disease. Even with a family history of AI's not ever family member gets one.

Perhaps by using the patient portal this will at least get you in with your PCP & he/she will consider the next step towards getting a proper dx.