Hello!

I've tried to look through various subs to find something relevant as a sufferer of both microscopic (lymphocytic) colitis and BAM, but I can't really find anything, like advice or tips, for people who do genuinely have both; instead it's advice for people to get tested for BAM in case they actually have that diagnosis instead of another one. Which is fair enough! Just not quite what I need personally :) So I was diagnosed with microscopic colitis (confirmed with a biopsy under a microscope) just about a year ago, and while I have attempted several treatments, like stopping certain medications I was on, as well as trying budenoside and colestyramine, none of them have worked. Then just about two months ago, I was tested for and confirmed to have severe Bile Acid Malabsorption, although as far as I recall, they weren’t sure what was causing it, so I believe that's type 2?
Since then, I've been on another medication, coleselevam, and I'm almost on the max dosage but it doesn't seem to be helping either, except in the first few days after the initial 3 dosage increases (not the 4th one though for some reason), before once again entirely losing its effectiveness.Thankfully there is at least still one more thing to try if coleselevam doesn't turn out to be helping, but I'm kind of scared I'll get to a point where I end up trying everything available without finding something that helps. I know other treatments do exist in the US for example, but unfortunately they're not all approved where I live. I'm honestly sick of this. On top of coleselevam, I take loperamide several times a day as well as psyllium husk powder (1.5 tablespoons morning and evening), but I still have to run to the bathroom like 5+ times a day, I spend probably an hour and a half a day at least just sitting on the toilet, I have a lot of nausea and acid reflux issues, I've only slept through a single night one time in the past almost 3 years without having to get up to use the bathroom in the middle of the night, and I'm exhausted all the time. I'm having a hard time finding a lot of research or evidence for how treatment works when you have both conditions. Is it possible that you can find treatment that fixes one, but you won't know because the other is having a flare up? And if you have any experience with having both of these conditions, or other bowel conditions along with BAM, I'd really love to hear how you deal with it, even if the answer is that you don't, really.
I definitely do feel very alone having both these conditions, and it's very debilitating. Any advice would be welcome!

you can't tell me that it's normal to s**** to the point you're having to drink out of the shower because your'e so dehydrated and don't know if it's safe to leave the bathroom and have stomach pains that are so bad you can barely walk and go blind for a split second.

Hello, I went to the hospital in late September because i was having my normal IBS issues, BUT also blood in my stool. they gave me an antibiotic and steroid for 1-2 weeks and i didnt notice any blood afterward, but was referred to GI to make sure my ibs isnt actually ibd. I currently am waiting to schedule a colonoscopy in January because the only availabilty was two days before christmas and i didnt want that.

after the medicine, it seemed i wasnt bleeding anymore, but my stool and appetite hasnt been normal in about two months now. Now, I’m seeing more blood in my stool. Is this something i should just try to live with until the colonoscopy? i have so many traits that line up with ibd and clearly the antibiotic didnt work for any infection, and the stool sample they took didnt have any infection in it either, so im convinced i might just have blood in my stool sometimes now.

Should i go back to the hospital, or should i try seeing if my pcp can diagnose a steroid to help with the bleeding? I’m only 19 so im kind of confused and scared and lost lol but my family has history with this stuff so im not very convinced that its not gonna be just “my normal” for the rest of forever

any tips to stop bleeding or advice for what i should do medically (try getting colonoscopy sooner, ask pcp for steroids, go hospital again etc) would be sooo appreciate. thank you!!

Had my 3rd loading dose of Entyvio on Wednesday. The following day, I had slight fever and muscle aches. Yesterday, I almost slept all day and my joints, especially knees hurt so badly. Didn’t feel these side effects after the first 2 loading doses. Started Entyvio as Rinvoq is causing bleeding and bruising. My GI intends to withdraw Rinvoq once Entyvio starts working. When did you feel that Entyvio started working for you?

Hello everybody

I have some questions about Ulcerative Colitis, could you please help me?

I greatly value your experiences and insights regarding UC. Your unique perspective can make a significant contribution to our understanding and our efforts to improve the care of those who are affected.

Link to Google Form, There is no right or wrong answer. Help from mainly USA patients and if other want to contribute, please help.

https://forms.office.com/Pages/ResponsePage.aspx?id=TP-Znf7nwU2o7Ril2oKNOVcByqNuio9Gq1C1dK6SH7FUNE1GVTYwVUZOTFQ2Q0ZaNks4Qk9aSTRVUC4u

Thank you so much for considering this request. Your contribution means a lot to us and to the community of individuals living with UC.

Warm regards.

I've recently lowered my pentasa dosage to 50gs every other day. I've been taking Metamucil every morning and taking Lacoryl twice a day. I also did a dysbiosis treatment for three weeks with the fodmap diet and ifaxim followed by three months of Norma Libs probiotics. A lot of my stomach and intestinal issues have subsided through this treatment. I am now able to eat cucumbers, peppers, kimchi, pickles and various spices(foods I haven't been able to eat and process for years. Still I can't eat lettuce but I'll take what I can get.)I'm as close to "back to normal" as I've ever been since my diagnoses 4 years ago. Just Thought I'd post this in case anyone wants to research. The meds I'm taking are from Central America which is where I live so medicine names may vary.

i've been seeing a lot of Drs, specialists, ER visits, hospital visits, and haven't really found an answer to my symptoms yet. all my life I've had occasional bloody/mucusy/pus-y stool, fatigue, etc., but didn't start to develop anemia and malabsorption issues until I was about 15 or so (as far as I know, since I didn't start to exhibit the symptoms until then). I'm 22 now, and my symptoms have just gotten so much worse just in the last 3 months or so. Now, all my stools are either bright red or medium red --either red spots, or large, red, fleshy streaks that look like strips of raw meat (sorry TMI)

Before, I could eat anything and 50% of the time I had a stomach ache so bad I would be crying/doubled over in pain, and now quite literally everything I eat is causing me agony. I've been bedridden, unable to work, eat, or sleep, feeling more tired and brain-foggy than ever before. I can't even have bone broth without diarrhea. That, coupled with on/off constipation for several days, and then back to bloody diarrhea after. Some foods are better than others. Low-residue foods still cause me some pain but nothing compared to acidic, fiber-rich, high-histamine foods.

I developed IDA a few years ago, got an iron infusion, and still struggle with the fatigue and malnourishment symptoms. My hematologist, rheumatologist, PCP, and others have all suggested I have IBD due to my blood markers for chronic inflammation, complement, c-reactive, large platelets/toxic granulation, frequent UTIs (PCP said IBD can cause acidic urine), arthritis and hair loss.

When I went to the hospital, they gave me morphine for the pain, which only made it SO much worse. My abdomen started spasming and I was in agony, screaming and crying until they gave me a ton of Bentyl. It helped a little but I still feel the spasms come and go. They found nothing on the endoscopy/colonoscopy except gastritis in my stomach and hemorrhaging around the rectum. They took several biopsies and I'm waiting on the results.

I'm not 100% sure, but I have a gut feeling it's not IBS. I'm going to see my gastroenterologist again on Friday, but I want some advice. I've seen people talk about how they had IBD hiding out in their small intestine. Maybe it's that? What kinds of procedures should I ask for/what is my next step from here for treatment? Any kinds of general advice I can do at home for bettering my condition?

edit: did a fecal test in hospital but they did not test for calprotectin, just viral and bacterial disease.

I had a stool test 2 weeks ago which came back at 245 I’ve just had another which came back at 145 the doctor things my next test in 4 weeks will be normal but I suffer with health anxiety and I’m still having symptoms mainly stomach pain, weight loss and no appetite feeling sick on and off too, he doesn’t want to send me for a conolscopy test as he thinks I don’t fit the criteria as I’m not having diarrhoea or blood in my stools this has been going on for 8 weeks nearly now I’m so drained of the stress, I’m eating healthy every day chicken veg and eating fruit I’ve seen 4 different doctors who all are saying the same thing I don’t know where to turn now 😩

My sons specialist needs to carry out a test to see if he'd developed resistance to adalimumab as it no longer seems to be working. He was taking Hulio since July and no longer seems effective. Will this be a blood test?

I have been suffering from bloating and constipation for the last 5 months.. for the last two months… no matter what i eat, my stomach is getting upset. Seems like my stomach is not able to digest food properly. Gas trouble etc.. whenever i eat something, i hear weird sounds near my glad bladder area constantly for quite some time. Any suggestions??

Hi all, I'm not really on this sub and I have never posted here before! I have colitis, been diagnosed for about 2 years but have experienced my symptoms for probably 8 years prior. I am diagnosed with a mild case of colitis - I feel l do need to specify this going forward - yet symptoms have always been bad enough that I knew something was wrong to be diagnosed. ANYWAYS on to why I'm making this post. After getting my diagnoses I was put on pills of course. I've been on 2 different pills since and both have made me feel absolutely awful. Like worse than I've ever ever felt before. I knew these couldn't be what I needed. I know a herbalist, went to her and she recommended Marshmallow Root Power. So I started taking it (used my own judgement to go off my medication and I'm NOT telling anyone to stop their medication this has just been my experience) the awful symptoms are gone just from not taking the medication, and all the symptoms I had originally have gone away since taking the marshmallow root! I've been using it for 4 months now. Just wanted to put it out there cause this has been a life saver for me. Maybe it will work for someone else too.

Does anyone know what this impression means?

"Small bowel loops are thickened involving the duodenum and jejunum. Stomach is distended with fluid. There is a patulous esophagus."

Thank you.

Hello everyone. This may not be the right sub for this and I am not sure where else to go. I will start this with I am not sure if I actually have IBD. I have had symptoms but haven’t really brought it up with my doctor. I know I know, I’m just out of PTO and it’s hard to take the day off. But the point of this post is an issue I am having with bleeding. I have had hemorrhoids for a long time. Started with minor external ones after childbirth 18 years ago, but have developed in to internal ones that were diagnosed a couple years ago. I have had some bleeding off and on, but every now and then I have quite a bit of blood, but have always assumed it was my hemorrhoids, but I have had blood in my stool the last couple days and it seemed to be a lot, but I also know blood in the toilet can look way worse than it actually is. I also had my gallbladder removed a few years ago and have had very loose stools since then. Not really diarrhea, but very soft and loose. TMI I’m sorry. My concern is that for two days now, I have had blood clots when I wipe. I just wanted some input. I have an appointment for Gastro but it will be a little bit for that. I feel like nothing will come of an ER visit but will go if needed. I will post a picture, I’m sorry it’s gross, but would like some input on if it looks like too much blood. Honestly the toilet seems to be full of blood but again I’m not sure. I don’t have any other symptoms that I can tell. I also have rheumatoid arthritis if it matters, and I take multiple medicines including a immunosuppressant and a JAK inhibitor. Thank you for any opinions. I know this may be serious, but I also don’t want to overreact if this is normal with hemorrhoids.

I recently had a bowel MRI to check if I have small bowel Crohns - small bowel looks fine but there was a finding of a “Partially collapsed distal large bowel” - my doctor said nothing about it when I last saw them and I only found out when I read the report myself - should I be worried - I mean it is literally a partial bowel obstruction?

• for context I saw my doctor yesterday and had the MRI a week ago

Hi. I have Microscopic Colitis and very confused right now. My diagnosis came after a colonoscopy and biopsy. However, even the doctor was surprised as I never experienced the typical diarrhea associated with it. My frequency was same and stools just became a little softer. I just had mild lower abdominal pain and my Calprotecin was elevated. He put me on Mesalamine 4g per day and said 3 months of this should fix everything. He also said this is not IBD or autoimmune and most likely allergic reaction to something. He also told me diet has no impact so eat whatever you want. After a few weeks of the medicine, I feel slightly better in terms of pain specially since I decided to quit gluten a week ago, but my stools are still same consistency (first time in the day would be perfect but second would be softer and mushy). I have also developed some tenesmus but it's not out of control and not always there. My question is should I keep going to the doctor and trying new medication or should I just leave it be and bear with it and expect it to go away on its own? Are there chances it can get worse to progress into the other more aggressive versions of IBD? I really don't want to keep thinking about it and keep worrying.

I just got moved off Stelara, but I have one leftover vial that's good for another month. I'm looking at trying to donate it or something; the "official" places I've talked to won't take it because they can't prove it's remained refrigerated. I'm open to donating it to an individual? Or if anyone has other ideas. It's just too expensive to throw away!

In the Denver area.

Maybe I’m stressed with school (I’m 31 backwards, still I’m Highschool, preparing for tests and exams.), or something but I cannot stay in remission. I’ve been on 2 full rounds of prednisone and I can’t even count how many doses of 3-2-1 they put me on. It’s so tiring. No matter what I do, it’s pain, then blood. I’ve been in hospital three times and had two colonoscopies since December last year. I’m never seeming to get better. Is there some sort of issue?

Recently my bloodwork has been showing higher than normal creatinine levels. My last one was 1.4. I’m trying not to panic and jump to conclusions of kidney damage.

I’m currently on Remicade and have been for many years. Before that I was on mesalamine, prednisone, and azathioprine (if I remember correctly).

I’ve had my A1c checked fairly recently, and it was only slightly elevated (pre diabetes). I do not have a diagnosis of diabetes or any history of kidney problems.

I was drinking Atkins protein shakes every morning for a while, and I’m wondering if that contributed to this or if it could be a result of having an autoimmune disorder. And yes I will be talking to my dr. Just seeking other people’s experiences.

I started rinvoq about 5 weeks ago and it’s been working really well until today, I’ve had urgency, loose stools about 7x, burning pain and fatigue. I’m seeing my IBD nurse on Monday but wondering if this can get better with my medication I’m on or will I need steroids again? I’ve literally only been off steroids for about 2/3 weeks ☹️

Hello everyone.
I have been suffering of chronic inflammatory bowel disease since I can remember.
As an infant, I already had troubles with highly acidic stools etc.
Throughout childhood it was okay, but never really good. In the second half of my teens it became a disabling disease, along with many comorbidities. Arthritis psoriasis with joint, skin and some organ involvement has also always been a topic.

Unfortunately for me, I grew up in a severely abusive and neglectful family, never received care... in fact I did not receive diagnosis until I was moved out in my 20s and was unable to digest any food, solid or liquid, without severe and bloodied diarrhea or throwing up.
I am in my late 20s now and after some years of betterment in my mid 20s due to treatment with steroids and immune suppressants, in 2022 I stopped being able to digest solid food and mid 2023 I became incapable of digesting even liquid food and medical grade liquids that are also used for tube feeding.
Since September '23 I have been on a parenteral diet - meaning I am being fed via infusions into my bloodstream via an intravenous port.

In March I got the devastating prospect that I may be suffering from gastrointestinal cancer. Two growths were found in my duodenum and several of the ulcers in my stomach and small intestine are under suspicion of perhaps having grown malignant.
I had to wait until September 16th for a surgery to have the aforementioned growths removed and the ulcers in my stomach cauterized in a 2-step gastroscopic surgery and then another one for taking even more samples and viewing the healing process.

My cancer values are still skyrocketing even after all this and the growths and samples are being tested. Some have had malignant cells in them, there's still more testing going on (to my limited understanding - I am too fatigued at this point to mentally follow everything the doctors explain to me) and in a while longer I will have yet another surgery to deal with the small intestine ulcers and look at them.
I am significantly overwhelmed since months.

Unfortunately in the same time frame I have also had to deal with people who pretended to be friends bullying me and destroying my mental health and relationship and my ex partner was anything but understanding and supportive of the fact that I needed distance from these "friends" that we shared... I'm saying this, because it cost an insane amount of my energy, brought my mental resilience down to zero and I had so many stress induced flares that were unneccesary, next to times, where everyone knew I was out of order and flaring severely, fighting literal death with how severe my illness is at this point or having difficult surgeries or other appointments happening, being used to attack me in my absence or right before, during and after such proceedures.
I lost my entire support system and the person I loved the most through all this nonsense, from 2-3 people aged in their late 30s to supposedly 60s nontheless.

I'm grieving the loss of my lover and my friends severely, even though they weren't healthy for me to be around and things ended ugly and tbh, even now there are hurtful things on social media and other shared pages that I'm trying to steer clear off and not let get to me. I was so focussed on trying to save my relationship and defending myself for basic things like needing space and having boundaries and not being willing to play people's free counselor or social buffer for their conflict with others in these past months.

I cared for myself and rested far below what I required and didn't have any energy left to inform myself properly about what's even happening to me or to get and keep in touch with people who experience the same medical troubles, similar severity, similar long-term effects to IBD like gastrointestinal cancer.

I wanted to ask here if anyone has gotten to this point or is at it right now?
How are you dealing with it all? How does life even work, what treatments were an option?
I was offered Simponi biological therapy in case it turns out the cancer values are high without malignant cell presence. Now I'm being offered chemotherapy and radiation therapy and I'm not sure how to proceed.
Is it still possible for me to do the Simponi one? I talked about this with my doctor and I tried to retain the information, but I couldn't. I'm too overwhelmed. Can anyone explain to me a bit how all of these things work, the mechanisms behind it? Not as medical advice, just so I can get some uncomplicated insight into what the options offered to me even mean and what they mean in lived experience by people who have been there.

If nothing else, all hugs are appreciated as well.
Or just people around my age who get what life with severe/terminal stage IBD is like, for mutual comfort and maybe giving each other some smiles. <3

I recently had a stool sample test. My result was 368. Iv been having yellow mucus and constipation for a while now. I go toilet around 3-4 times a day. I suffer with health anxiety so I’m a frequent googler. I had bloods not long ago for a different matter they tested my CRP which was 8 Docs told me that’s okay. Wasn’t sure. Can anyone help or give me some idea of what it could be?? I’m terrified of the idea of cancer🙃

Does anyone who has had their colon completely removed still have symptoms related to the Ulcerative Colitis? I have an illeostomy and they left the rectum so that I can have a jpouch made and get reconnected at some point... But I hear that some people choose to just keep the illeostomy.... I had a landlord who had the jpouch made and had so many complications she cried to me she wished she had never had it done..... I know that pouchitis is a common complications that I hear is pretty much just like having UC AGAIN........ Like from what I see fifty percent of patients develop pouchitis.... Seems like the odds aren't good... But the doctor who recommended surgery in the first place had the same surgery thirty years ago with no issues so I opted to go ahead with it....... I still have some blood in the mucus sometimes when I go to the bathroom the old way... Yes that still happens even without it being connected to anything..... I know there are a whole host of symptoms related to inflammation from Ulcerative Colitis that could still happen like arthritis and iritis and skin problems etc..... does anyone still have any of these types of symptoms after having their colon removed?

Hey guys, so a few months back my GastroEnterologist figured we’d extend the cadence between my remicade infusions from 6 weeks to 8 weeks.

I now am experiencing bloating for several months. Even in the morning after I empty out, I’m still bloated. Most things I eat will further bloat me.

Could the change in cadence cause this? I now am back to 6 weeks however in anyone’s experience could this take a few infusions to get me back to a stable state ? I never had this issue and I’ve been in remission since 2015 with my UC.

Also, about a year and a half ago, I had an appendectomy. I noticed that I have 3 pain points in my abdomen, exactly where the incisions were made for the appendectomy.

I lift pretty heavy at the gym, and so my concern is if i potentially tore my sutures. Could this potentially cause bloating ?

Thanks in advance everyone.

I've recently been diagnosed with Crohn's - mild and in the small bowel. Don't get how it's mild as somehow in agony with pain every day and calprotectin of 700 with pain but told as no diarrhoea has to be diagnosed as mild. Been put on a course of Budesonide - 9mg for 4 weeks, 6mg for 4 weeks, 3mg for 4 weeks and I'm nearly 1 week through the budesonide 9mg, but there's only a fraction of a difference. I'm still in pain and needing a heat pad all day, now sobbing every day at the most random things, having hot flushes and nausea worse than before, and I never had diarrhoea so it's not like that got any better, if anything my constipation has gotten worse. My gastro has had to communicate with me solely via letters as there's no appointments for months in my country's health system and I'm on the emergency waiting list for an appointment. Some things I say on the thread say a couple days, some say a week, and some say two - when is this thing meant to kick in?? When should I try and contact the doctor - might as well send things by carrier pigeon, it'll be quicker 🤦‍♀️ /j

Hi folks, hope it’s cool to post this here! My friend and I are working on Vita Labs, a personalized supplement brand, and we’re trying out some new ideas for those of us with GI issues (like IBD, IBS, you name it). We’re trying to get the right mix of vitamins that actually absorb without the typical side effects that can mess with our GI system.

Anyone feel like they’d benefit from a more efficient supplement? If anyone’s curious, I’m happy to share more about our beta. And for those who want to help us make this a reality, here’s our Indiegogo campaign – even a share would be huge! 😊

One nice about living in a house instead of an apartment: I can scream bloody murder in my bathroom because of pain. I guess I'm officially moving out of my warm/sunny weather remission. 😣 😵‍💫

I started having burning in my upper abdomen and it would spread to my left side back in late July and early August. Then I went to a doctor and was diagnosed with GERD and put on Omeprazole after like a 15 minute doctor appointment. I started taking 10mg daily and it helped, but then the pain came back but in a different spot, it was hurting on my left side in the middle of my abdomen and went back to the doctor and tested for H-pylori and I didn’t have it. Then it started getting worse, and after my cross country race it started hurting extremely bad and spread to my whole left abdomen and went to my left side under my armpit, and my medicine has stopped working as well. I’ve started getting sores/blisters in my mouth and lots of diarrhea along with that pain. Any ideas of what it could be because I’m not sold on it being GERD because I’m not having pain in the chest or acid reflux. So far I’ve not had blood in my stool or anything to my knowledge. Any ideas on what it could be?

We get our asses scoped much more than the average human being so if there are any issues, they are detected right away. I go every year while average human beings with no issues go once every ten years.

Was just thinking of that Dawson’s Creek actor who got diagnosed with colorectal cancer at age 47. Very young.

I had a first cousin with Crohn's. Although doctors told him it was due to excess alcohol consumption and extremely bad life - style. I have now been diagnosed with Microscopic Colitis and I am not sure if my cousin counts as family history of having IBD?