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I have had UC for around 2.5 years. Had one bad flare up and approx 60cm of my bowel is affected. 2mg of Pentasa keeps it under control and I can eat anything but alcohol is not good for it.
My UC was starting to turn bad and then I tried unpasteurised Sauerkraut, I ate approx half a dinner plate in the evening. The result was the next day my bowel was completely normal and has remained so. No pain, no diarrhoea, no wind. I’m not suggesting this is a miracle cure but it may help some people so I thought I would share it. I eat half a plate every day.
My dad has UC for as long as I can remember – I am 20. He has been on multiple medications and still is and has never ever had full relief. – Cant do certain things because of it and it impacts his life.
I wanted him to try CBD oil, however as I live in the UK it hard to get a good one.
If we was to buy CBD it would have to have 0.3% THC and the CBD would be from hemp as thats all you can get in the UK i believe.
Is this likely not to work as more THC would be needed and not from hemp?
Also are there any other ways of helping this issue. I think he has given up with going through the NHS as he has never got anywhere and normally makes the situation worse.
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 experiencing along with UC psoriasis and very itchy skin.
Anyone else ?
Hello, I’m new to the forum. I was diagnosed with small bowel Crohns about a year ago. Still trying to understand when to be concerned and what to do about certain symptoms. For example, my gut rumbles loudly sometimes. I mean across the room loud. When I’m in meetings at work, people ask me if I missed breakfast or lunch, but that’s not it at all. It normally rumbles more after a meal, but not necessarily. I’ve found it to be a precursor of a flare up.
When I told my gastro this, she seemed to think it was probably unrelated, but i really really dont think so. When I had my near full bowel obstruction earlier this year, my gut was going crazy then. It’s also often accompanied by very smelly gas :/
My questions are, does anyone else have these symptoms and find them to be associated with Crohns? If so, has any medication worked to reduce the symptoms? I’ve tried gas x and IB Gard and dont think they do anything. Anything else you have done with these symptoms? It’s very embarrassing, especially at work. Any thoughts would be appreciated!
Hi all. I’m new to the forum, and new to this ailment. I am 33 and used to consider myself pretty healthy. My diet has always been what I thought was “reasonable” for an American. I was never under or overweight, though I did start to set records on the scale in my late 20’s and lose that college physique. Around that time, I had a couple hemorroids. A little blood when I wiped, an occasional external one. Once, I even had one removed. That hurt like a bastard, and I swore I’d never do THAT again! Anyway, I started to notice blood on the toilet paper again a bit over a year ago. I thought, oh, another hemmoroid, but then I started to notice mucous on my stool. I was on a 3mo work trip abroad and wanted to wait to get back state-side to go to the doc. I was still finding blood, and more of it on my toilet paper when I got back and my GI ordered a colonoscopy. When I found out how much they cost, I cancelled it. I was traveling to my home country, where at a fine clinic, you can have a modern colonoscopy for 1/10th of the cost. So I did that. The doctors there diagnosed me with Unspecific Ulcerative Colitis. By then, I was seeing blood nearly every time when I wiped. I didn’t even know what Colitis was! So they prescribed me mesalamine. It worked like a charm! I stopped bleeding within a day or 2. Everything went back to normal, and it was as if I was cured. Well, I ran out of the stuff, and the bleeding came back. So I went to another GI here in the states, and they put me on Apriso (a mesalamine cousin, basically a delayed-release Advil to reduce inflammation in the colon). At first, that worked wonders, but then, the efficacy wore off. Now I’m taking 4 375mg pills per day and my toilet looks like a had miscarriage every time I move my bowels.
When I watched the video of my colonoscopy, I was surprised by how normal everything seemed. It was only at the very end, in the lower colon where I saw some reddening and a bit of blood (very minute amount). But it didn’t seem alarming, looking at it. But my symptoms have continued to get worse since then.
Now when I void my bowel, the stools seems to back up, then with a push, rush out, like there was a restriction there. It never comes out slow and steady like before. And when the stool comes, so does the blood. It drips into the bowl, especially when I strain.There is some cramping lately as I void bowels, but only then, and it’s not unbearable. Just a bit of cramping, then it goes away. I do sometimes feel a bit nauseated while cramping, and that feels very odd.
Otherwise, I seem to be fine. A while back, I tried Juicing, to give my bowels a rest, in hopes that it’d heal on its own. I lost 15lbs those 1.5 weeks, but I still have fat on me. I can even stand to lose 5lb more. I haven’t been losing weight since. No foods hurt me (right away). It’s only when I release them that they avenge my gluttony.
Later, I discovered Jini Patel Thompson’s “Listen to Your Gut” book and forum. I am currently following her protocols for Ulcerative Colitis: taking the 3 Natren Probiotics (in powder form), taking the Wild Oregano Oil, as well as the Mucosaheal pills. After about a week, I see no results. I’m still on the Apriso. A week or 2 ago, I developed this thing where I cannot pass gas without a bit of liquid coming out first. It’s to the point where each passing of gas has to be on a toilet. These wet farts are waking me up at 5am each day for the past week and forcing me to the bathroom. It doesn’t seem to matter what I eat or drink. When I pass the liquid protion, there seems to be some sediment in it, like dissolved stool and mucous. When I pass the liquid/gas, I feel like there is more, but when I strain, only boold comes, dripping into the bowl. So I stop. After that, I feel fine.
What gets me is that all stories of UC include FATIGUE, DIARRHEA, and CRAMPING. I have none of that. I feel fine. I’m rennovating my home, lifting things after working a full day, waking up early, and going to bed late. My stools aren’t liquid, but aren’t hard. They’re normal, I’d say. And the only cramping I have is just lately, and only when I void my bowels.
So with these symptoms, I wonder if I wasn’t misdiagnosed. Maybe I have just a bad case of hemorrhoids or something? I tried showing my video to my GI, and she took the most cursory glance at it before agreeing with the UC diagnosis. I’m still not convinced…
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…
Felicity ❤️ Xx
When I was flaring, I often felt like there was literally nothing I could eat that wouldn’t make me feel sick. However, the truth was there were at least 5 items that I could always have (chicken broth, eggs, avocado, rice, etc.) that would be gentle on my GI system.
It honestly made me feel better emotionally knowing I could still enjoy some foods that didn’t make me sick, and I knew that if I was ever traveling I could pack some of these items and never be stranded without something to eat (which is HUGE!).
What are some of your go-to “safe foods” that you know when all else fails, you can at least eat these and still feel well?
I am looking for others who gave become much worse since using biologic drugs. I know I am not the only one I hear it from nurses in the hospital and waiting rooms meet people who know of someone. Yet all the forums seem to be sponsored by drug companies. Could things be sensored? I have had crohns from 26 years and tried 4 biologics. I never had so much as a mouth sore in 24 years with crohn’s before trying a biologic. Since I have had iritis, erythema nodosum, pyoderma gangrenosum, horrible pain in my joints. A severe headache and 3 aneurysms in my brain found after drug discontinued and headache gone but previous scans did not show them. U have been much worse with fatigue, pain and concentration. Are there others with previous experiences these symptoms and stiff body pain and the “drug induced lupus” is supposed to be reversible but I would give anything to feel as good as I did before the biologics. Is there anyone out there to relate. My medical advice is to take a 5th biologic drug but I am scared to do that. What I’d I add something worse to the above list. I know my experience is rare and I had short periods of time that the biologic worked great without side effects I am not saying they are bad for everyone but for some I worry they are extremely dangerous I think my immune system has been made more aggressive by them
Just hoping to get some information on different treatment options besides biologics for Crohn’s Disease. I was diagnosed a little over a year ago. Started on Mesalamine for about 8 months, but I was still symptomatic. My GI switched me to Sulfasalazine which worked great for the Crohn’s, but I’m fairly certain it’s the main reason I’ve been having 13 – 15 migraine days a month! I go back to my GI on Monday and I’m really nervous he’s going to want to put me on a biologic! Are there any other treatment options besides biologics that have worked for you?
Thanks so much for your help!
I have had CD for about 20 years, a mild to moderate case that is allegedly in clinical remission but still having symptoms daily and have for years and years. I finally tracked my symptoms after almost being allowed into a clinical trial but screened out for symptoms that were not severe enough for the study. I have been on mesalamine nearly the whole time but feel like it does little for my symptoms. I even became non-compliant with my regimen for a while and felt no big difference in symptoms. I fall into a strange category of being ill enough to worry about cancer risk, had minor surgery (fissure repair and sphincterotomy ten years ago) but not severe enough for biologics or prednisone. I guess I am glad about that but at times I am worn out by the symptoms and fatigue that I do have. It seems like I have not met many mild to moderately affected people and wish that I knew more.
We hear from a lot of community members that being diagnosed with IBD has affected how they see the world – what do you think?
I have crohns, I also have a permanent stoma.
I was on infliximab for almost five years. I was switched to vedolizumab which I reacted to. I have now had my first treatment of stelara. That was a couple of weeks ago, since then I have had cold like symptoms and horrendous fatigue. My next injection is not due until January. Has anybody else had these side effects with stelara and do they fade off?
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.
The holidays can be a stressful time, especially when managing life with IBD. Share any helpful tips for managing holiday stress with fellow community members to support them during the holiday season!
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.
Maybe about 5 months ago I developed a dull aching pain in my lower right abdomen that happened mainly when I bent over and stood back up. It got really bad a couple of months ago where it was hurting all the time and I went to my doctor. They tried an anti inflammatory and it didn’t really do much for the pain so I went back and he suggested IBS. So I take medicine for that every morning because that’s when I usually have to either have diarrhea or I’m constipated. But usually diarrhea. It seems to help with my nervous stomach most days except I took it the other day and still had diarrhea. Now my left lower abdomen and even the lower part of my ribs seem to hurt throughout the day. I’ve always been an anxious person and I usually have to go when I get nervous. But this constant dull pain in my right side is really bothering me not knowing what it could be and I plan to go back to my doctor again. Anyone have any similar situations or advice?
Lately I am feeling depressed and exhausted with these symptoms. It started one and a half year ago.
Suddenly I started feeling gassy one day and started pooping a lot than usual. I mean pooping twice than what I was eating (really I mean that). I was loosing weight so fast. I lost 12Kg within the next 6 months.
I have countless number of tests like Endoscopy, Complete Blood test, Liver Function Test, Sugar test, Thyroid Test etc. All normal.
As of now, I am pooping 3/4 times a Day but it is all normal. Docs are not helping me. They don’t know what is happening with.
I am feeling totally devastated and don’t know what to do.
My symptoms are –
Pooping a lot (but formed stool no diarrhoea at all)
Feeling gassy occasionally
Unable to gain weight (height 5.4 and weight 42kg )
Does anyone here have the same symptoms? Please help me. I will be forever thankful.
Just wondering if this has happened to anyone on here.. I suffered from c diff after two rounds of antibiotics. Undiagnosed for months because my GP and GI doctor he sent me to said it was IBS. Luckily I got a new one and she figured it out at my first visit!
Anyway… I still have not gotten back to normal (7 months later), and a calprotectin stool test shows me at “borderline” by about 12 over the “normal.” All blood tests have come up normal as well.
Anyone else develop colitis from c diff? I’ve read articles that it’s possible. My symptoms are all over: looser stools, mucus in stool, lower right stomach cramps and pains, undigested food in stools, back pain, bloating, pain after eating, and borderline inflammation.
I’m not running to the bathroom throughout the day, I go once in the am. So I keep getting told it’s normal. I don’t feel normal. Very frustrating! I obviously don’t want more problems, but if I have them, I’d love to start the process of trying to feel somewhat better.