r/crohns

Hi guys, I’ve never really used Reddit before, nor have I ever made a post, but I feel like I have no where to turn.
I have a colonoscopy and mri booked for next week, I’m worried my tests are going to come back normal when I know in myself something isn’t right.
This all started around the beginning of June, I was having dreadful pains in my right side, originally assumed it was my appendix and my work sent me to a&e. I got there, they assumed my galbladder so I was checked for galstones, I didn’t have any. I spent 3 nights sleeping on a&e chairs with insane vommiting and dihaorea, I was eventually diagnosed with gastrointestionitis or however you spell it. (I apologise I’m not good with spelling) they said I had an infection that caused inflammation so I was sent home with antibiotics, I didn’t feel any better. I later find out from my gp (whom I’ve been in with about 15 times since) that I had severe food poisoning which led to the infection. However, my Calprotectin levels were a concern, and some other things they didn’t disclose so I was reffered to the gastero team to see about ibd. Since then I’ve developed various symptoms, abdominal pain, not in a set location it does vary, I can go days with constipation or days with the opposite, I have had blood, like turning the whole toilet bowl bright red blood, a lot of mucus (never had this before) different stool consistency/colours etc, nausea, vomiting, mouth ulcers, I drop weight quickly and then gain it back, feeling like I haven’t fully emptied my bowls, night sweats and constant discomfort. I’ve been on countless medications from the gp, but I did a FIT test and it came back normal, so were my bloods. I am so worried that my tests next week will come back normal and I will be left with no answers, my day to day life, my work, my sleep is all affected, I feel like my body is failing and I’m not sure what to do. Any advice would be very appreciated thank you :)))

I’m looking to hear from anyone who has been through something similar.

I went in for a preventative colonoscopy, and they found an abscess and were concerned about a possible fistula, so I had an MRI. Sure enough, they found a fistula leading toward my vagina, although it has not broken through. I was very surprised by all of this news because I don’t have any symptoms.

I don’t believe I have Crohn’s disease, but I’m having another MRI to see if they find any signs of it. I always thought I would know if I had Crohn’s, but now I’m not so sure.

I’m pretty confused about how this happened. I do struggle with constipation, but I’m otherwise at a bit of a loss and trying to understand what my potential treatment options and journey might look like.

If anyone has experienced a rectovaginal fistula, an abscess, or something similar—especially without having Crohn’s—I would really appreciate hearing your story. Any information, experiences, or advice would be so helpful! ❤️

So I’m about to be 17. I’ve been really meaning to get a colonoscopy for the past three months. About three months ago, I was having anal bleeding and I went to the hospital for it. They told me I was internally bleeding from my small intestine and they gave me some antibiotics and I was fine. However, they told me that I need to get a colonoscopy because I might have Crohn’s and I think that honestly makes a lot of sense.

For the longest time, I thought I’ve had IBS because my Nana has it as well. My stomach issues have been crazy ever since I was a kid. If I eat my stomach hurts, if I don’t eat my stomach hurts. We thought I had a gluten allergy and so I got tested for it when I was like 10 and they said that I didn’t have a gluten allergy. It will be the most random food I’ll eat in my stomach will hurt so bad I essentially have to take laxatives and poop it out or it will continue to hurt.

So my stomach will be hurting a lot which causes me not to eat, which makes my blood sugar go low and I get super dizzy which is where the diabetes comes in. I have a glucose monitor and I’ve been tracking my blood sugar and it’s been super low.

We don’t have health insurance so I can’t get my colonoscopy done for a little while. I really want this diagnosis because I’m tired of my tummy in pain 24/7. I also have some other health issues, but I don’t think that they’re necessarily related to crohns, I have EDS and diabetes?/anemia? (Need to go to the doctor for that)

Hey guys, sorry for a slightly long and probably all over the place post but I need to rant or vent or something, and my baby is next to me so I am trying to type fast before he wakes so my grammar is going to be horrible.

So for a little background, I live in a VERY small community where we have literally only 3 GI doctors.
Switching is not so easy, I have tried a few times to no avail from my GP. If I wanted to go to another area with more GI specialists for my crohns, that is over a 5 hour drive each way, so not that realistic ( but the thought has crossed my mind).

I have been diagnosed with crohns for almost 5(?) years now, I’ve been on a few biological previously that haven’t helped. The most recent I was having absolutely terrible joint pain, there was times I couldn’t stand up and if I could I didn’t trust myself to do so holding onto my baby as I thought I would fall. I had just seen my GI and when I mentioned this there wasn’t even any sign of acknowledgement that he had heard anything I was saying, instead he seemed to only be more interested in informing me the importance of breastfeeding over formula. There are medical reasons as to why I use formula, as far as I’m concerned that conversation should stop as soon as it no longer has regard for the form of treatment for my crohns. I have seen him many times and my concerns were never heard. I have had symptoms that continued to get worse for years and I am at a loss on what to do.

This most recent time when I seen my doctor I was given a new medication, and it was decided that I would need another scope. Before seeing him my next scope was set to be November but after seeing him it has been moved to sometime after January. He has been saying I am likely in a bad flare now for a few months, why on earth would this be getting pushed ?? My follow up I was told that would be in a few weeks time, I called to schedule and was told I can’t come in until a few months time if it is not urgent based on his notes. Everything I am being told is contradicting each other constantly.
I was given tdm papers many times, but it was improperly ordered. I just had paperwork filled out and on it there were two options to choose from. The first one being is this a permanent disability expected to last throughout the life and the second one being is this a prolonged disability expected to be recovered from. Why was the option for prolonged chosen, last I checked and was told crohns is a permanent chronic condition. I understand remission may happen at some point, but that doesn’t mean everything is gone forever.
A few months ago I was prescribed a injection for my crohns, later at my follow up and every follow up before switching medication, he had argued and fought with me raising his voice how the medication I’m on doesn’t exist, even as he had wrote the prescription.

I truly feel as though I am going crazy everytime I see this doctor, there is not one appointment I have not left in tears and just recently when I seen him I feel like something In me snapped. I had just broke down, questioning why I even bother going to see him, I don’t have faith or trust In him any longer with my crohns and I just feel totally defeated. I am sitting here, feeling the worst I have since before I had my diagnosis, no colonoscopy in the near future, no medication as I’m currently waiting on approval, wondering how I can finally convince my GP to send me to a new doctor.

I see a ton of posts where people are just talking exactly like they do in medication commercials, and it doesn't make sense.

When you get over Crohn's, you typically forget about it. When you're hurting? that's when we hang out online.

Somehow that has completely seemed to flip over in recent years, and it ain't just a handful of people trying to wish their remission into happening - it's the vast majority.

Makes zero sense except as a marketing job for the most profitable field of medicine in history.