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  • 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 there! Over the past couple of years, what started as just having food intolerances and a sensitive stomach has turned into a progressively worse battle to feel well when my GI track tells me otherwise. I have chronic diarrhea and nausea, in addition to pretty constant pain in my abdomen, blood and mucus in stool, and inflammation markers across the board. For over two years, my white blood cell count was tracked because it was above normal limits consistently, but no further testing was ever done it was just "notated". I didn't even understand that was an indicator of inflammation until a recent trip to the doctors this year after a particularly bad flare. Over the past few years I've had these flares, which can honestly be pretty debilitating, without much warning. Diarrhea and way too much blood, vomiting, and so much inflammation in my joints moving is out of the question. It feels like the flu's hulk like cousin and can take me out of work for close to two weeks. I honestly always thought these issues were just complications of my food intolerances or a mild IBS, but I've cut everything out of my diet I possibly could and they still occur. So during the last flare I finally went to the doctors while the issues were persisting and from all of these previous symptoms and my high WBC they finally mentioned it could be IBD. The idea that I might finally have an answer for issues that I've just been told were food or mild IBS was honestly such a huge relief. Fast forward to trying to schedule an appointment to speak with my GI Doctor who previously diagnosed me with food related IBS. I was sent straight into a colonoscopy without any consultation and nothing was found, even after taking biopsies. At this point, there were no plans to do further testing, but my primary care had made concerns that my symptoms went above and beyond IBS, so I decided to ask if I could come in to discuss more with my GI doctor. Instead of a consultation, another test was set up, this time an MRI E, again nothing major was found. I know I should be happy that IBD hasn't been found in either of these tests, but at the same time I'm worried because my symptoms (which extend past the ones mention) just don't all match up with IBS. I want to ask if there's anything else I could be suffering from, but my doctor is pretty determined not to ever have a consultation with me and just say it's IBS. I'm scared that I'm going to go years with this progressively getting worse and worse until I have to go through this all again. Keeping that in mind, I guess I just want to know if it's possible both these tests could miss an indicator of IBD? It took months to even get the tests done and by the time I did, I was no longer in a "flare". I'm just curious if others have had similar symptoms and then everything came back normal, what you did next.

    Hello all, I will start by saying this is all completely new to me and typically I am not overly comfortable talking about this. With that being said, I am 25 years old and have had stomach issues for the last few years but always tossed it up as a weak stomach, it is what it is. Fast forward to this last April things got bad. Crippling pain, severe weight loss, achy joints, some blood in stool (minor), severe nausea, and fatigued on the "bad days" and even had a few fits between then and now of constipation for days (some of the worst pain I have ever felt) all while having 5-12 bathroom visits a day. I being as hard headed as I am, I still put it off and tossed it up as I have a bug and it will go away until about a month and a half ago. My best friend, who has had severe Crohns for a decade, realized what was happening and forced to make a GI appointment to understand what is going on as our symptoms are in line. At this point, I can say the Diagnoses has become almost as stressful as living with what is actually going on. I have had blood work, stool tests, colonoscopy, endoscopy, biopsies, and an ultra sound over the last month. All of which came back normal with the exception of finding that I "had" C Diff but it is no longer active and I must have beat it without treatment. The GI went ahead and stated that the symptoms are the same as I was having and as IBD and immediately started treatment for the C Diff even though it’s no longer "active". I am getting the impression that they are chalking it up as that and now that I have actually committed to getting help I am being brushed off. If I "had" C Diff why am I still so sick even after showing not active? I feel like I am a crazy person that wants to be diagnosed with something that I do not have but I legitimately feel something is not right. I do not have another appointment for another two weeks after I finish the antibiotic treatment and just do not understand what is next after this as far as testing and diagnosing. What should I expect, what should I say at the next appointment, and most importantly am I crazy? This has all been a bit much for me as I am otherwise very active, until recently, and over all healthy. Just looking for thoughts and advice on what I should expect next. Thanks in Advance.

    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?

    Had a bad flare in May and was in hospital for 3 days. Saw GI 10 days later for follow and my hemaglobin was 10.5 a week later I requested another Check since I was feeling awful and was now at 3 weeks of bleeding hgb was 9.9. My GI said it was a normal variance and follow up with her in 4 weeks. I continued to feel like my heart was pounding with activity/ clinic said it was from the prednisone I was on. I got a second opinion and hgb is 9.8. This doc also checked my iron levels, which were extremely low. Needless to say I have switched doctors and will have my first IV iron infusion on Tues. Has anyone had an iron in full? I'm a little nervous. Will also be starting entyvio as soon as approved by ins. Of course nervous about that too. Anyone's experience with this med?

    LIVING WITH IBD: Sex and Sexual Satisfaction Up to 58% of individuals reported impaired sexual functioning, and 46% of females and 30% of males reported reduced sexual satisfaction after IBD diagnosis. The aim of this research is to explore various factors that may impact the relationship between sexual function and satisfaction, such as; body image, self-esteem, relationship satisfaction, sexual communication, psychological distress and disease activity. Your responses will help us better understand the impact of IBD has on sexual dysfunction and sexual satisfaction. Your participation will also help us understand other factors that may contribute to their relationship. The information provided will also be used to help inform support interventions in this area. The study involves completing an online questionnaire which should take approximately 30 minutes to complete. At the end of the study you are welcome to add your email address (stored independently from the questionnaire data) in order to go into a draw to win 1 of 4 $100AUD Coles-Myer or Amazon gift cards. Winners will be drawn on the 30th of September 2019. Who can participate? We are looking for participants over the age of 18 who are diagnosed with IBD, currently in a defacto relationship or marriage, sexually active and fluent in English. How to participate? To participate, please click on the link here: https://swinuw.au1.qualtrics.com/jfe/form/SV_8ujxXuv7zd4InoF Please also note that this questionnaire has been approved by the Swinburne University Ethics Committee.

    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

    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!

    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.
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