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  • Hey everyone, So I wanted to write here after I found another very informative post a while back about colonoscopy coming back clean when searching for IBD. I want to tell everyone a little about whats going on and see what you that have been diagnosis thing/feel about my situation. For the past 5 years I have gradually got worse (so since mid 20s) with diarrhea and horrible pains that come and go. A few years ago I ended up in the emergency room a couple times and the ER doctors said it was Gastritis. It happens every 6 months or so, and in between the ER visits is about 1-2 weeks of painful stool passings, and sometimes I cant even leave my house because I need to be around the toilet. First the doctors did the tests for IBD, my Calprotectin came back over 300 (when I wasn't even having a "flare" up feeling because they took so long to get me in), along with Vitamin Deficiencies and my symptoms of pains, etc. So they sent me in for a Colonoscopy, which revealed no IBD traits in lower Intestine, but they found 4 massive hemorrhoids, which they had to do surgery on. I was OK for about a few weeks, then past winter ended up in the emergency room again, and then again a few weeks ago. They did an Ultrasound a few days ago and found a massive stone in my gallbladder. I meet with the doctor this week. The thing is, the colonoscopy was negative for Chrons. But 3 of 4 other tests have shown some things towards this, such as high inflammation in my stool. Now I have stones and have to have surgery on my Gallbladder. The doctor keeps hinting at IBD, and the ultrasound doctor yesterday said "I thnk its a couple things going on" when I told him "Finally, I am relieved to know its just Gallbladder!", then he continued in a concerning tone "Have you had a colonoscopy?" and I told them yes, it was negative for IBD stuff, and he goes "Hmm. Well we need to look at something else but there is too much air in the Ultrasound to see what we need to see. So first we need to take care of the gallbladder problem now." So what in the heck is going on! My sister has IBS, and I told my doctor "I want to get with a dietician, maybe its just IBS" but he said he doesn't thing it is and thinks its inflammatory due to the tests and symptoms. Does any of this sound familiar to you that have been diagnosed? I am just frustrated because its been album 5 years since these episodes started and now they keep finding different stuff wrong, and now I have to have another surgery! Any help or advice would be greatly appreciated, because they keep 'hiding' this other diagnosis until further testing, and now, after another surgery.

    Whether it’s the heat and humidity or wind and the cold… we hear from many IBD community members that weather can strongly affect their symptoms. Does this happen to you? Have you found any tips or tricks to cope with it? Please join the conversation here!

    Hi!! I’m 20 years old and I’ve recently been diagnosed with Crohns around 8 months ago, I’ve had stomach issues my whole life so getting the diagnosis wasn’t a shock or too much of a hit to my confidence (I’m very much used to and comfortable discussing everything ‘poo’). Luckily I have a high pain threshold and have been used to the multiple and urgent bathroom trips my whole life, prior to my diagnosis. The one thing that has really got me down recently is the intense fatigue, I’m sometimes sleeping 23 hours a time and I’m still exhausted when I wake up. I’ve always been a sleeper but never been so tired to the point where it’s seriously compromising my university work (studying law) and my positivity, something I have always upheld without conscious effort. I’m having to ask for a lot of excuses to be made for me with missed deadlines and missed classes and because I dont really see myself as having a condition or ill (having been this way most of my life) I feel embarrassed and annoying to have to be asking for exceptions and extensions due to my lack of ‘get up and go’, if you will. I’ve just finished a 6 week course of prednisolone which I’m not sure even worked as I had to take a break for a few days due to the azathioprine I take alongside making my very nauseous and physically sick unexpectedly after 3 weeks of taking it. I have now been moved onto mercaptopurine which I took for the first time last night, luckily I’m not feeling sick, YAY. If anyone has any tips with fatigue that would be amazing as it’s really affecting me mentally which has never been an issue for me, and any other little tips if you have any gems of wisdom you’d like to share with a ‘new’ crohnie... Many thanks Felicity ❤️ Xx

    Hello! 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?

    Hi I’m awaiting colonoscopy for what I suspect is Chrohns. I’m just wondering if anyone else ever feels swollen inside their abdomen and to the side. (not quite where food sits after you eat). Not the same as feeling bloated like after a big meal (where you can feel the food taking up space) but swollen, like your own insides are taking up space. I know that sounds ridiculous but I can’t quite explain it another way!

    Mostly out of curiosity, what do you have for breakfast? Do you ever switch it up, or do you mostly have the same thing every morning?

    I'm so curious what everyone else eats at family gatherings that you know you won't have an issue with digesting. For me, my two staples for holidays that I know I can eat are green bean casserole & stuffing.

    Hello everybody, I’d like to share something I did, that is probably helping me. I’ve had moderate IBD for over a year now. I tried many treatments, with little to no effect. I started logging everything about my dietary habits to see wether I could find a relationship between certain foods and symptom severity; sure it got worse for me when eating spicy stuff, or gluten rich foods, but that was it. Only two months ago I began an analysis of other factors, including my hygiene routine. Normally I shower everyday, scrubbing most of my skin with liquid soap and washing my hair twice with regular shampoo; I never walk barefoot so to prevent foot fungus infections; and I have a rigorous oral hygiene routine where I first use floss, then a waterpik (water pressure gum cleaner), then I scrape my tongue, then I brush not only the teeth but also the inside of the cheeks, the palate and the tongue before finishing with a one-minute mouthwash, three times a day. Why this rigorous? It is the only thing helping my halitosis. I have been doing this type or mouth cleaning for more than two years. Three weeks ago I noticed my tongue was very dry, whitish-greenish in color, so I decided to skip the tongue scraping for a few days. After a week or so I noticed quite less abdominal pain, and some halitosis returned. My tongue was pinkish and moist, just like a healthy one. By that time I wondered wether my excessive hygiene had a relationship with my bowel disease? I decided to ditch the floss, waterpik, tongue scraping and mouthwash, keeping only a regular teeth brushing only once a day. I stopped scrubbing my skin, now when I take a shower I only wash the armpit and groin areas, and shampoo my head only once. I even again started to walk barefoot indoors. My symptoms improved more than 80% over the course of two weeks. Sure the halitosis has returned and my shoes are only a bit smelly, But I rather live with that than being miserable from IBD symptoms. Probably in my case there is indeed a relationship, and I really hope for this recovery to persist. It may be that this is only working for me, but it might be worth a shot if you think your hygiene is strict as mine used to be. Good luck!

    Hi, I was diagnosed with Crohns in December 2018 and was put on prednisolone for 9 weeks. I haven’t been on any medication since coming off of them approx 6 weeks ago when I was told I was potentially in remission. However, the past few days I have experienced the mild stabbing pain in my lower right abdomen and today I have had the WORST stomach pains I think I have ever experienced - intense gripping and burning all around the stomach, especially the lower abdomen. Also back ache and numbness in the top of my legs. I’ve been shivering cold, and have had to take numerous trips to the toilet, once with some blood. So now I’m assuming I’m not longer in remission!! :( I have also been told I may have ibs.. is anybody else in this position and struggles to know if it’s a flare up or IBS? And also does anybody else experience stomach cramps so intense it feels like your whole insides are about to explode and fall out !? Also with very very loud gurgling/popping noises? I feel really alone as nobody quite understands the pain it causes and how it makes me feel mentally too. So would be great to hear from someone who experiences something similar. Thank you x

    How many of you had to get many CT scans over the years due to bowl disease? I’ve had 50 ct scans and I’m worried about cancer. I’m male and 39 years old

    I have been advised by my consultant to try probiotics to stop the pain in my bowel when in remission. I don't know that anything has changed since I started taking them tbh. He said I could just have tiny bits of active Crohn's that is too hard to see so they might not do anything anyway?! They're expensive and this is annoying. I feel like because they can't see anything exciting in my bowel or in my bloods they just want to write off anything I'm feeling.

    I wandered how many others with Crohns have bowel movements that contain undigested food bits.

    My 5 year old boy has been suffering intermittently with pain in his bum for the last 2 years. It lasts anything from a few days to a week and then passes. The other day i rushed him to hospital as he was having an episode and i found a large lump in his anus. The doctors took him down to surgery and found a large abscess and a fistula. They couldnt repair it and had to put in a seton. They also took a biopsy. They will be taking him down for more surgery once his inflammation has subsided. The consultant told me that it is very rare for a child of his age to be diagnosed with crohnes but he couldnt answer me why this happened except that he has trouble emptying his bowels properly and it could be due to that. He wont eat pasta, bread, potatoes either which makes me wonder if they upset his stomach. How old were any of u? And what were ur symptoms? Any advice? Thanks x

    At 18 I found blood in my stool told my doctor and they sent me for a colonoscopy (my dad passed away of colon cancer at 40). They said it was nothing I was fine just some tears and tiny hemorrhoids. I turn 20 way more blood and issues. They send me again this time he comes back and says ok there were a couple polyps, white spots and inflammation but then laughs and says it's nothing to worry about I dont even think you are your dads daughter. So that made me really mad. It was the same doctor doing the colonoscopy both times. Also the doctor my dad had. I was there because of the blood and pain wanting to know what was wrong why it kept happening and he apparantly thought I was there because I was afraid to die like my dad? I mean yes I didnt want to die but I was there for a reason of my own my own health issue not because I'm just a worry wart. So now I'm 22 and it's still here. The last three days have been blood and today a blood clot. Along with white and mucus looking parts. And it hurts so bad to even try to use the bathroom. My stomach has been swollen out for a couple days and today I finally said ok maybe it isnt going away maybe I should go see the doctor. But now I am terrified of the same thing happening again. I dont want a $3000 bill for someone to laugh at me because they think I just haven't gotten over my dad dying. I'm anaemic and we didnt find that out until I went to have a surgery because my menstrual wouldnt stop. So she gave me some iron and went ahead with the procedure. I havent been back to a doctor sense my last colonoscopy because it made me so mad. But now reading about ulcerative colitis so many things match up. I've never understood why I got so many mouth sores. I had decided before maybe i had just spouts of crohns or something with the urgency to go and it always being mainly loose stools. But after running into ulcerative I feel like that is dead on what it is. Did anyone else have this much trouble finding out what it was that you had?

    Hey everyone. I'm new to this group. I've been having what seemed like flare-ups of symptoms that started 3 years ago and I've always muscled through them because I'm not one to go to the doctor. My symptoms were like this: lower left and upper right abdominal pain, increased urge to go to the bathroom with no stool or very little, constant nausea that kept me up all night for weeks, weight loss (BMI of 14.2). This happened to me twice a year but I always shoved it aside and told myself it's just a stomach bug and it'll pass. Usually it did pass within 2-3 weeks. Well this year I landed in the hospital because I couldn't even drink a glass of water anymore, that's how bad my nausea was. Ultrasound was clean, basic blood work showed nothing but profound dehydration and I was sent home with nothing but a couple prescriptions for nausea and heartburn. ER doc recommended I see a gastroenterologist. Fast forward to a few weeks later, I'm still having symptoms but I saw a gastroenterologist who said it could be IBS. I didn't know anything much about IBS, let alone IBD. Now that I looked up IBD, I realized it perfectly describes me. I am surprised that my doctor didn't even mention it. He did send me to the lab for a stool test called fecal calprotectin, which I looked up and is supposed to test for IBD. Does anyone here have IBS and IBD? What is your experience? Is it true that I might just be scaring myself by looking up IBD, when all I could have is IBS?

    Hi everyone! I've been reading through these forums and have learned a lot! I'd like to share my story and maybe get some advice on what questions to ask or things to bring up at a doctor's appointment. Sorry, this is really long. I'm a 28 year old female and ever since I was in high school (more so my junior and senior years) I've had issues with abdominal pain and persistant diarrhea. I'd have to get up and run to the bathroom several times during class or stay home all together if it was particularly bad. My mom, who never believes anyone is ever sick, became concerned and we researched some things to try to improve my situation while we waited for an appointment with the GI specialist. I tried a gluten free diet at the suggestion of a friend who has celiac, and it really seemed to help. The GI specialist I saw was seemingly annoyed by my just being there but agreed to do a endoscopy. He very rudely told me my results were completely normal and gave me antacids and said "it's probably heartburn, maybe IBS." I decided to stick with the gluten free diet and have been gluten free for almost 10 years. Over the years I have still had issues with diarrhea and abdominal pain, enough to negatively impact my life. I've had to miss work and school, cancel on plans with friends, etc. I used to travel internationally (13+ hour flight) twice a year and I would eat nothing while I traveled so I would run the risk of dealing with diarrhea in the airport or on the plane. Obviously none of this is normal but I was so traumatized by how that first GI doctor treated me that I didn't want to go back. About 5 years ago I ended up having issues with pain in my chest and joints. The chest pain was determined to probably be inflammation in the cartilage between my ribs (costochondritis) and the rhuematologist I saw wanted to do blood tests for celiac when I told him about the diarrhea, which came back negative. He made me an appointment with a GI doctor for a colonoscopy but I cancelled it because I was scared. In 2016 I got pregnant and around 5 months into the pregnancy started having a constant tenderness in my right upper quadrant. My OB thought it was my gallbladder so I had an ultrasound done which showed no stones so the OB said it was probably just normal pregnancy pains. The pain was still there when my daughter turned one so I went to my PCP. She tested me for H. Pylori (negative) and gave me a PPI to take for 6 weeks, which did nothing. I demanded a referral so I was sent to another GI office. I saw a nurse practitioner first who told me it was possible to still have gallbladder issues without stones so she sent me for a HIDA scan which was just barely outside of normal range. I saw the GI doctor at my follow up appointment and he was not convinced it was my gallbladder. He said he wanted to do and endoscopy and colonoscopy and, if those were normal, he'd send me to a surgeon to remove my gallbladder. So I did the endoscopy and colonoscopy the same day. The doctor said the endoscopy showed some inflammation in my esophagus but didn't seem worried about it. He also said he found a few polyps in my colon but he didn't think they were anything to worry about. Pathology didn't show anything concerning about them. So I was sent to the surgeon and had my gallbladder out. This was well over 8 months ago. I felt really good after my surgery, no more pain, no more diarrhea. I was worried because I heard that diarrhea problems were common after gallbladder surgery. I thought this maybe had solved my problems. However, in the past month or two, things have gotten so much worse. The diarrhea is so unpredictable and if I have anything I need to do during the day I basically can't eat anything at all. Even that isn't enough sometimes. I had a meeting to go to at school recently so I avoided eating anything before hand and I still got sick. It came on so suddenly while I was driving I couldn't even pull over anywhere. It was the most embarrassing thing that has ever happened to me. The stomach pains have been awful too. It gets so bad some times that I can't even stand up straight and I come very close to telling my husband to take me to the ER. It often feels like I'm going to have a bad diarrhea episode but then when I go to the bathroom I struggle to pass anything and if I do it's hard, dry stool. I'm currently in nursing school and dealing with this plus school is so stressful. On the days I have clinical I don't eat until I get home. I've lost 30 lbs since August. I'm worried because next semester I'll be in the hospital for clinicals a lot more and for 12 hour shifts so I don't know what I'm going to do. I've made an appointment with a new primary care doctor so that I can get a referral to a GI specialist. It really sounds like Crohn's or something else that I'm dealing with, which terrifies me. Any input or suggestions for me? I'd appreciate anything anyone can share.

    Hi Everyone, relatively newly diagnosed UC here. I guess my symptoms were a textbook case up until my diagnosis via colonoscopy in this january. Cramps, diarrhea, bloating, blood/mucus/pus in stool, lots of weight loss, lack of appetite, nausea etc. I was prescribed Salofalk 3g granules. Now the Salofalk treatment and low-residue diet seems to have worked well, I have 2-3 bm-s a day, some minor cramps and flatulence here and there, but mostly I'm fine. The one thing bugging me, is that I still see blood in my stool almost every time I have a bm. I was also diagnosed with hemorrhoids, but the blood I see is sometimes darker in color and sometimes it's approx. a spoonful. Does any of You experience blood in stool in remission? Is that common? As I'm fairly new to the disease itself I'm not even sure how I should know whether I'm in remission or not. I'd like to know your thoughts.

    A dentist is a person who deals with all the issues and makes sure that your dental and oral health is in a good condition. It is quite necessary to find good dental services. The thing is if you find the perfect family dentist for your family, he/she can give you good tips as well as take care of your generation dental problems.

    Morning. Had endoscopy + colonoscopy Wednesday. I was told bowel looked normal but they went on to take a total of 20 biopsies! 8 from endoscopy 12 from bowel. Is this excessive? I was under the influence it would be a couple of biopsies not that many! Also - bit worried it’s going to come back as ibs. I’ve been ill for over 10 years and the last year I lost 2 stone in a matter of weeks could barely eat crippled in pain never known anything like it. I get bloody mucus sometimes unreliable bowel movements. Whilst I’m pleased they didn’t see anything sinister (massive relief) I am concerned they will just diagnose ibs and I will be left to get on with it!! How many biopsies did you have? They suspected UC but clearly no signs on the day

    I've been suffering with some strange symptoms for four years. I have periods of time where I am severely nauseous-- like can't stand up straight, need to be near the toilet at all times kind of nausea. It's completely debilitating. I also have suffered with extreme constipation issues my whole life, and in the last six months they have gotten increasingly worse. I know these aren't typical IBD symptoms but has anyone had some experience like this? They've ruled out gallbladder, gastroparesis, and an upper endoscopy came up clear...? Any advice is appreciated. Thank you : )
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