For the past 2 years I’ve been having chronic diarrhea, cramping in my lower right abdomen (but sometimes left). I’ve cut out almost everything from my diet including gluten but I’m constantly sick (going to the bathroom 5-9 times a day when I work out it’s more 12-15 times a day). My 1st cousin has ulcerative colitis and I had blood in my stool occasionally so I was so sure I had that.
But I just had a colonoscopy and my dr said it looked clear but they did take some biopsies and I have a follow up in a week. I am just so worried about being told I am faking or that it’s just IBS when I am sick 24/7 and have already tried cutting everything out of my diet. I was just wondering if anyone has any other experiences similar to this so I know what to expect moving forward?
I’m sorry to hear that you’re going through this, not having a diagnosis and knowing something is wrong is so frustrating, unnerving and exhausting.
Continue to be your own best advocate, you know your body better than anyone else. Rather than elimination diets, you may want to start with a low residue diet (cooked veggies, meat, no nuts/popcorn, alcohol, no wheat breads/pastas)…from there, slowly start integrating foods and see what your triggers are. Keep a food journal, as it can be hard to remember. Log how many times you are using the bathroom. Bring your “stats” with you to your next doctor appointment. A low hemoglobin/anemia can oftentimes be related to IBD as we “constantly bleed” within…even if it doesn’t show up in the toilet.
I Hope you find answers soon! Please let us know how your next appointment goes! We are here for you! -Pam (InflammatoryBowelDisease.net team member)
THIS! I’m sorry for my delayed response, I just saw your question. I actually had several uneventful colonoscopies and biopsies which didn’t lead to definitive diagnosis. I was finally diagnosed with Crohns by using the Pill Cam – it’s a swallowable pill that takes photos inside your digestive tract. Because my disease activity was primarily in my small bowel, this was able to identify it! It took me 6.5 years from onset of symptoms to diagnosis, so my best advice is be persistent, advocate for yourself, and don’t be afraid to see another opinion.
First post but this one stuck out to me! Just wanted to reiterate the camera pill – I suffered for 19 years without answers and had many different cameras and X-rays over the years, always normal. They finally offered me the camera pill and low and behold it got stuck within ten minutes of recording starting and didn’t move. Crohn’s disease was the verdict. (And the camera did pass through me eventually 🙂 )
I also got sick on a work trip recently in the US and they put me straight into a CAT scan. They told me more about my issues than anyone in the UK ever did. I don’t know whether these things can be asked for under the NHS? It took ages for me to get access to these procedures and they both very quickly gave a bunch of information. And the cat scan doesn’t require a bowel prep, which is always nice!
I agree with Amanda that you have to be your own advocate and be sure to speak up when you think something is not being addressed.
Secondly, I am glad to hear there were biopsies taken, as that can reveal more than what meets the eye. As a matter of fact, my Crohn’s was not confirmed until I had biopsies taken.
Do not worry about doctors thinking you are faking it should nothing be confirmed in the colonoscopy. There is always the option of a second opinion from another provider, and other options you can discuss with your doctor!
And, remember we are all here for you so please keep us updated as you find out more information! 🙂
Hi, so sorry to hear about this. I know I am a bit late, but I have experienced this as well in a sense. Well I am diagnosed with UC, but a few years down the road, I was really sick again and got a colonoscopy and it came out normal. I was so frustrated and confused. My doctor said that my colitis must not be active, but I was experiencing everything that I was when I was active. I think theres a fluke sometimes and it could just be that day was better than others? Not sure, but if they are saying that you don’t have it- then ask them for an explanation for your sickness!
This post is exactly what I was searching for. GI issues my whole life. At first I was told it was IBS but as it progressed I was told it was more than ibs but no one could tell me what.
5 years ago I had my first really bad flare that landed my in the ED. They did nothing except blood work that showed WBC very elevated, elevated inflammation markers (that wasn’t new as I’ve had joint inflammation/issues forever). A few weeks later I had a colonoscopy that showed increased chronic inflammatory cells. I was told it was likely IBD but he couldn’t say UC or Crohns definitely. I decided not to go on meds as my flares were so spread out and mild compared to what others experience (I have 2 cousins with severe crohns).
Over the last 5 years I would say I was doubting the diagnosis even though I have flares but they were nowhere near as severe and that’s more because i was used to it, it was “normal for me” which apparently doesn’t equal true “normal”.
Fast forward to November 2018 – same horrible symptoms as the flare from 5 years ago. Ended up in the ED. This time they did a CT scan that showed severe inflammation and the ED doc confirmed the IBD diagnosis and for the first time I was introduced to the cocktail or pred and antibiotics. Though I felt awful taking it, within a few weeks I was feeling better. My inflammation markers were down for the first time in over a decade (even the baker cysts in the back of my knees shrunk). I was better until my recent colonoscopy.
January 11 2018 – I started with a new GI bc mine retired. I got my 3rd colonoscopy with biopsies.. normal! Soo this new dr tells me there is no sign of disease. I asked about my previous tests and lifetime of symptoms and she basically gave me 🤷🏼♀️ As an answer. She mentioned the only other thing was to do the pillcam but that she wasn’t “concerned enough” to do that yet. She also gave me a medication for constipation…. even though I told her when I am not in a flare I have 3 BMs a day. When I am flaring I can go 10 times in 3 hours. Needless to say constipation isn’t really an issue for me.
Since my colonoscopy (which was far more painful and traumatic that my past two – came to midway through to what felt like what it looks like when someone gets liposuction) my symptoms have intensified but I’m told it’s ibs. This pain, the inflammation in my joints, the blood in my stool and so many other symptoms are just not ibs. I feel like a crazy person who like wants to be diagnosed with a disease. I’d be thrilled if that could be said but I am just so confused and feel like I’ve taken 20 steps backwards in getting any answers!
What prompted me to seek out support tonight was that I am currently flaring again/still and am just so frustrated.
I had to respond to your post as your journey has been so similar to mine. I’ve had pain since my early teens, went through a number of different diagnosis by different docs, endeometriosis, appendix (which was removed), gastritis, ibs.
I used to end up in hospital every 6 months or so with s mystery illness that no one could figure out, pain always in the same side, right hand side above appendix, when in flare no food tolerated, high temp, fatigue, very loose bowels, some doctors said crohns then other docs said not.
Put under gastro for a million and one tests, pill capsule that didn’t go down far enough as I was flaring, I tried to explain to docs that pain was lower than where the pill had got to but they didn’t listen, next day at work I collapsed in pain as pill had got stuck in me, rushed to hospital, which happened to be a different one from where I had the original test as I work in a diff place to where I live, they didn’t do pill cameras so we’re condused what to do with me and message never got back to original hospital.
Then had tubes down (that didn’t reach the middle section of bowel) and tubes up (that didn’t reach the middle section of bowel), neither reached the polyp and all were normal. The doc wanted to refer me to pain team as they thought nothing else was wrong with me. All very distressing.
Then my gastro doc found that I had primary hyperparathyroidism, which is where a gland in your neck goes weird and means you feel really poorly, was admitted to hospital for this and then had an op to remove. Gastro doc thought this was the issue as this can cause aches and pains, felt loads better after this op but pain in tummy remained.
Back to same gastro doc, who requested another pill cam as they had seen a small polyp on first and wanted to check this. No flare this time and this was when crohns was discovered. Then doctor confirmed blood tests always showed high inflammation and low albumin lebels which are typical of crohns for years. I was so mad as I felt for years they had disbelieved me. Tests started at 16 and the diagnosis was at 31.
Doc put me on tablets but these have me awful heartburn and made me feel worse so I decided to go without as my crohns is mild, I was used to the pain and better to only be poorly twice a year with s flare than feel ill every day from the tablets they put me on. Doctor discharged me and said go back if it worsens.
Few flares after this but mostly well controlled. I’m now 34 since then I have since had a kidney stone/infection including stay in hospital as side effect from gland issue, I’ve also been diagnosed with high blood pressure and I have asthma (1 hospital admission).
All of this has meant that I suffer with terrible health anxiety which I am getting counselling for, the main reason is as they missed the crohns for so long I worry they will miss other more serious diseases such as cancer or heart attack etc. I’m not sure docs realise the impact that diagnosing crohns has on a persons mental health, I know my story is not unique and people have to fight to be heard or believed and it often takes years to get a diagnosis. It’s significantly impacted my life from a mental health perspective. You spend years feeling awful, people doubt you that you begin to doubt yourself and wonder if your going mad then when you finally get a diagnosis there is no apology or admission that they treated you poorly. The strangest thing is I felt relief when I was diagnosed as I knew something was wrong all along and I wasn’t going mad, how is it right that we should feel relief when being diagnosed with a debilitating life long disease!
Recently I’ve had new pain on the left side of my tummy, so have been back had another colonoscopy and entroscopy all looked normal (which is confusing again) awaiting biopsies to return. Also may have arthritis caused by crohns/psoriasis and I have eye issues which docs think could be crohns related. It’s the gift that keeps on giving.
I honestly believe that we need to raise these issues in whatever forums we can so that doctors realise the impact they have on ibd sufferers mental health.
So stay strong, keep fighting to be heard, you know your body so don’t doubt yourself xxx
@louiseanderson – I’m so so sorry for your extended journey but truly sympathize with your struggles. Please know we are here to support you – there is not one path to diagnosis or treatment for IBD patients!
Please know you’re also not alone in your health related anxiety. I too suffer from this and I know several of the other advocates here would agree that it’s plagued them as well.
Here are some really helpful articles we’ve shared:
Your stories are exactly what I needed. Thank you so much for sharing them. I’m sorry that you’re going through this. I also suffer from bowel issues, pain, and chronic inflammation. I had a laparoscopy ten years ago that was normal, colonoscopies that are always normal, and a normal endoscopy. The most recent colon/endoscopy was yesterday. It all looked normal, but I’m awaiting biopsies. I’ve tested positive on blood tests for celiac, but also been retested and had negative celiac tests.
I was in and out of the hospital when I was in my 20s with no known cause for the pain and symptoms, it was so frustrating to me that I just stopped going to the doctor. I began going only for the acute things like migraines, flu, colds, etc. Something has always felt wrong with my body, but I’ve learned to compartmentalize and ignore the discomfort and pain. I live off caffeine and ibuprofen.
Last month I got really sick and have been sick since. I can’t hold down food without nausea or bloating. I’m either constipated or pooping my pants. There’s a ton of blood to the point I’m anemic. I finally decided to go to the doctor and get answers. I saw one GI specialist and he told me it was my weight, then instructed me to go back on gluten for the endoscopy. I got a another opinion and she told me it was a blockage and possibly colitis. So we did the colon/endoscopy yesterday. All they found were internal hemorrhoids. When they told me, the doctor and nurses were all smiling–as if it was something to be joyous for me to have these mystery problems with no solution! I cried.
I refuse to believe I’m just fat and all my problems since childhood are somehow related to BMI. I’ve been so good at ignoring my pain and compartmentalizing my symptoms, but I just don’t want to do it anymore. I want answers. I want solutions. It feels good to know that there are others who feel the same way.
It honestly shakes me a little to read so many stories on the same thread, with so many obvious signs and symptoms of this disease, fighting for their health while being ignored and dismissed by their doctors, nurses, specialists who are supposed to be helping and finding answers and solutions. So many of you write that just for a proper solid diagnosis, it has taken years and the run around with these medical professionals has done serious emotional damage. I have only been struggling through this for months, looking back on things, maybe a year. To think of what lies ahead of me has always been sort of daunting since the beginning of all this, but more so after being misdiagnosed, loosely diagnosed, interrupted, ignored, dismissed, and talked down to by so many doctors and nurses. I hope you get through this and make out okay, I hope we all get through this and make out okay together. Life’s crazy struggles will not keep us down
Yes! We must continue to press on. IBD is a difficult journey, and often we have to fight to be heard and taken seriously. Continue to remain focused and to be your own advocate. You will make it through, but don’t allow the noise to keep you from finding a solution in making you better. In the meantime, you have us here to support!
I’m so glad I found this post – Iv been self medicate if IBS for a little over 5 years and always put my symptoms down to a stressful lifestyle! But over the last 18 months Iv had horrendous pain that has landed me into hospital 6 times crippled over with pain! Nothing has ever been done just buscapan given and sent on my way. Finally a specialist was on when I was admitted with my paid and booked me in for a colonoscopy, they took biopsy’s but said it was compleatly clear! So annoying because the pain, bowl movements, tiredness, blood is all so real… It’s so weird, I feel hopeful that the biopsy’s come back with something? Because I don’t want them to think it’s all in my head! I feel so poorly all the time! And I’m so much pain!
Also those who had a colonoscopy, how long did it take you to get over it? 48 hours after and I feel terrible! So ill and sore! I don’t know what to do??
Hi @mrsing2018, I’m so glad you reached out. I hate hearing how much pain you’ve been in the last 18 months! And although I know it’s supposed to be a “good thing” that the results came back clear, I know it’s actually all the more frustrating because there’s still no answer for all the symptoms you’re experiencing. I truly hope you get some answers soon and continue to advocate for yourself until you do! I hope others will chime in and share any advice they have for you as well. You definitely need some quality rest and recovery time after the procedure but typically most people are able to go back to their normal routine after 1-2 days. If you continue to feel terrible, I’d reach out to let your doctor know, just to rule out any underlying issues!
Thinking of you and we hope you’ll keep us posted on how you’re doing. – Shelby, IBD.net Team Member
It is certainly frustrating when you don’t get answers to why you are feeling unwell. Have you asked for the pill cam test? Perhaps your inflammation is located in the small bowel rather than the large bowel which is only seen in a colonoscopy. Maybe this is a further test to be considered so you can rule more options out?
Also, when I was flaring and had to go in for a colonoscopy, it would take me literally days to recover. Like 5-6 days. I always felt horrific afterwards. Even in worse pain. I wouldn’t go to the bathroom for days. It would throw me into another flare. Definitely let your doctor know that you are experiencing symptoms, so that they are aware.
I hope you get answers soon and relief from the pain.
You have no idea how glad I am to have come across this. I have been struggling since I was 16 on and off. I am 21 now, in college, and the symptoms have been only getting worse. I have been in and out of the emergency room and the doctors aren’t being very helpful. There definitely is some type of arthritis they think, but they don’t know how to connect the GI symptoms with the arthritis. My GI specialist thinks for sure it isn’t IBD, and has said it is IBS and I should learn to meditate. I have a lot of bloody diarrhea and bile in my stool, lower right side pain, join inflammation, arm swelling/stiffness, extreme fatigue, hemorrhoids, and a bunch of other symptoms. They tested me for so many things and have done three colonoscopies and found nothing. An endoscopy was done, they found acid reflux, which is better now but still doesn’t explain everything else. I am going to see a dietician soon to figure out a diet that may help with the IBS but I am so frustrated and tired. I have been tested for so many foods and I am not allergic to anything, though they believe it could be an intolerance. It really has impacted my grades, my social life, and my mental health. I don’t think IBS would cause it to be this bad and after reading this I asked my doctor for the capsule endoscopy to see my small intestine. This has been an extremely painful journey and I am so glad so many people who have written on here have been able to overtime find a diagnosis.
Hi @diagnosisneeded16 –
Thank you for reaching out! We are so glad to have you here! It seems as though by all of the testing, you should have some clear answers! If they think that you have IBS, we have a website for that specifically; https://irritablebowelsyndrome.net.
What did your doctor say when you asked about the capsule endoscopy?
Our best – Meagan, InflammatoryBowelDisease.net Team Member
I know how frustrating this can be, when you feel awful and don’t have a proper diagnosis. I think it’s a great idea to have the capsule endoscopy done, because your symptoms may be stemming from issues in your small intestine rather than your large intestine.
Hang in there. Press your doctors to continue to do tests until you get solid answers. In the meantime, have you tried changing your diet to help with symptoms? Perhaps try staying away from dairy, grains and processed sugar until things calm down in your gut. Also, start take probiotics to help with digestion and hemp oil to help with inflammation. I use Colorado Hemp Oil by Quick Silver Scientific and it has been an absolute game changer in lowering my inflammation.
Rooting for you. You will get answers soon, in the meantime try those things I mentioned to help offer you relief.
Wow I am very grateful to have come across this forum, I feel like we are all in similar, truly messed up situations. I’m hoping sharing my journey someone can relate or tell me I’m not crazy.
For most of my life, I always tended to have a “weak” stomach and developed gastritis around 16. But nothing so severe that I was able to live a completely normal life and eat however I wanted to. Starting when I was around 21, I began having chronic diarrhea. My first gastro I saw did a colonoscopy, without any biopsies, and told me it is IBS and that I need to try yoga. I felt very frustrated but managed to get by with having chronic diarrhea almost daily. I would say by the age of 24 my diarrhea was almost every single day, and I would immediately wake up with stomach pain and had to use the bathroom right away. I was going about 5-6 times a day, and I have stayed this way for a long time. Fast forward to last year, when I turned 26, the pain and diarrhea started to become so extreme it was interfering with my desk job. I had to keep my pants unbuttoned because even the slightest feeling on my stomach was unbearable. Finally, I started experiencing such extreme nausea that would only come on while I was doing diarrhea. I finally found a new gastro who really believed me. She did a biopsy with my colonoscopy and the colonoscopy was clear, however she found granulomas which she confirmed was Crohn’s disease. She also then gave me a pillcam to confirm my diagnosis. I know all of you can relate to me when I say that it felt like the biggest relief, that I was going to be starting remicade and hopefully on a path to recovery. Long story short this doctor ended up being somewhat difficult and when I had concerns about the high dose of prednisone she put me on, it would take at least 2 or 3 days before any nurse would get back to me. I decided I really needed a gastro I can call and speak with a nurse that day I feel sick, but since I had my diagnosis I felt better that I could just find a new doctor who can start me on treatment.
Fast forward to recently, I am seeing a new gastro, he is considered “world renowned” and works at Mount Sinai in nyc for the ibd clinic. I could not believe it when I saw him and he felt like my original doctor was wrong and feels like I just have IBS. I know something is wrong with my body and that this is just not IBS. I just had a colonoscopy yesterday, and the doctor who did it said it was clear, and he does not believe it is Crohn’s at all. I feel devastated and back to square one. He told me it would be two weeks before the biopsy and further auto immune testing is finished.
I guess I am just wondering has anyone else ever gone through something similar, but finally came to a resolution? And also, I thought granulomas found in a biopsy of your intestine is a clear (if not the only actual definitive) diagnosis of Crohn’s disease.
I truly appreciate taking the time to read my extremely long post and I also just want to say I am so sorry for everyone in similar situations, there is nothing more frustrating than feeling how we do on a daily basis on top of feeling so dismissed.
I realize I am late to the “party” but I did want to pop in and provide any help that I can.
From personal experience it is possible for IBD to not show up during a colonoscopy, especially if its in the small intestines. I would keep working with your doctor(s) and talk to them about using a pill endoscopy. As others have mentioned, its a camera the size of a large vitamin that you swallow. Once you swallow it you’ll probably end up wearing what looks like a “fanny pack” until the camera makes its great escape. This pack is what wirelessly records what the pill cam sees for the doctors to review.
After the pill cam the doctors may want to schedule more tests but they will have a better understanding of what you are experiencing.
I hope this helps and really hope you start feeling better.
Thanks so much for jumping into the conversation @silvermike! We really appreciate you sharing your thoughts and taking the time to help out others here.
– Shelby, InflammatoryBowelDisease.net Team Member
I was almost a little relieved to find this. I’ve never heard of the Pill Cam before but I’ll be looking into it first thing tomorrow! I’ve had digestive issues for years but didn’t look into it until I was forced to. It started with a Bartholin’s gland cyst and a kidney infection around February of this year. I started feeling gas pass through my vagina and my gynecologist looked at me like I was crazy and said it was just trapped air passing. I told her I’d been doing some research and was sure that it was a recto-vaginal fistula and she said “that’s weird” then referred me to a GI. I talked about all my digestive issues with the GI including the fact that I have mouth sores ALL THE TIME. Literally all the time. I get 4-5 at once for 1-2 weeks, then they clear up and a week later I get them back in different areas of my mouth. He agreed that I fit the bill for Crohn’s and ordered a colonoscopy with a colorectal surgeon who diagnosed the fistula, performed a colonoscopy, did a biopsy and came up with nothing. That surgeon then referred me to a gynecologic surgeon and they performed the repair together as a team in July. Neither of them could figure a reason why it happened.They chalked it up to a complication of the Bartholin’s gland cyst and infection that followed. Fast forward 6 weeks (now) and I start having pain where my surgery was. I can tell its swollen, its painful and there was even a tiny bit of blood so I called and made an appointment assuming it had re-opened. I went for an exam yesterday and found out that it was actually healing well and this is a NEW fistula! As of now, the plan is to wait another 6 weeks to have surgery again, this time with a stoma! The surgeon says we really need to try to find out what the underlying problem is so that this doesn’t continue to happen. I’m freaking out a little but maybe this Pill Cam can tell us something!
I am so relieved to have found these posts because I’ve been feeling so alone in all of this! I am 19 and have been having chronic lower abdominal pain with loose stools multiple times each day. I randomly get nauseous all the time and all of my food goes straight through me. I have gone from 135 lbs to 120 lbs in the past few months and I’m constantly tired and dehydrated no matter how much I drink. I have been dealing with this for 9 months now.
In April, my GI dr performed a colonoscopy and endoscopy, which came back normal. I do have high inflammatory markers in my blood as well as low iron levels. It has been very hard to get my doctors to understand the reality of my suffering and how much of an impact it is having on all areas of my life.
Last week, I had an abdominal CT which I’m still waiting for the results from. My biggest fear is that my tests will come back normal again and I will not be taken seriously anymore, leaving me to find ways to deal with my pain alone.
I’m playing tennis in college and I’ve found that my symptoms get worse while I play, does anyone else experience this?
Any advice on treatment in the meantime or getting a diagnosis faster would be amazing.