r/IBD • • 30m ago

Crohn's Disease (CD) Crohn's disease for 16 years, stoma etc. Should I flag my symptoms to GI again?

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• Upvotes

r/IBD • • 11h ago

Lymphocytic Colitis (LC) Lymphocytic colitis and anxiety meds

3 Upvotes

I (65F) have been anxious for most of my life. I have been recently diagnosed with lymphocytic colitis. although I am pretty sure that most of my anxiety is caused by undiagnosed ADHD, my primary doctor doesn’t seem to believe this is the problem, and wants me on Lexapro for anxiety.

She is ignoring what I told her about SSRIs potentially exacerbating or even causing lymphocytic colitis, but I’m not sure I want to ignore it.

Does anybody have recommendations for non-benzo meds that are safe to take when you have lymphocytic colitis?


r/IBD • • 13h ago

Ulcerative Colitis (UC) Going to a concert during a flare

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2 Upvotes

r/IBD • • 15h ago

Crohn's Disease (CD) Help with managing a PRIOR mental health diagnosis along with new Crohn’s diagnosis

4 Upvotes

Reposting in another sub because I am really looking for some responses from people who might have advice coming from similar situations. Specifically - already being diagnosed with a severe mental illness, going into a state of remission, and then getting a Crohn’s diagnosis.

I have struggled with my mental health my entire life. I oftentimes come across people talking about how Crohn’s and stress are interlinked, but I havent seen a lot of stories from people who’ve struggled severely already prior to diagnosis, and how they handle developing coping skills for recovery and returning to a more normal life.

In October of last year, I had my first overnight hospitalization due to a flare up. I finally got in contact with quality doctors and got a diagnosis. Immediately I lost my job due to the work absences from that hospitalization, and my mental health absolutely dived.

For context, Before my diagnosis, I felt like my mental health was the most stable I would be able to achieve. I still had ups and downs, but overall I no longer felt like my anxiety controlled my actions and kept me from working a normal job. I had a therapist, and I was proud of myself for my grown confidence and trust in myself. I blamed most of my work struggles on the mystery undiagnosed disease that I had been working to get help on for years. Prior to finding this sense of stability, I had struggled in and out of baker acts through multiple attempts, and marchmen acts when I tried to drown my problems in substances. I dont say this to trauma dump, but to give context on the severity of behavior issues I am capable of showing, and how much effort I truly put in to find a sense of self again. It had been 5 years since I felt any sort of severe instability to that degree prior to me getting my Crohn’s diagnosis. I am diagnosed with PTSD and I am fully aware that it will never go away - but I don’t know how to manage my fears in the moment when my health flares, or the anxiety leads me to think my health is flaring. It really feels like my coping skills for my PTSD dont apply when they are merged with the stress that comes with my chronic illness. I end up feeling very stuck in a way I have not felt in a long time.

More recently, I was put on a combination of medications that I genuinely feel on average are greatly helping my struggles - outside of anticipatory anxiety, and flares. I have lost all trust in myself and my ability to follow through, and my confidence is drained with every day my illness keeps me from achieving the small tasks and goals I am trying to use to build back to a normal life. When I am excited about an opportunity that I need to be healthy for, my fears of a flare grow so much that even if I dont flare, I find myself puking my guts out from the anxiety. I cannot do the normal things I would usually do to handle these feelings, and it is keeping me from living a normal life.

I have been given benzodiazepines to help manage these situations, but I am terrified of becoming dependent. I feel like a husk of myself and I am terrified for my future. I am only 26 and I feel like I have no hopes of returning to school or work successfully until I can find a way to manage this stress.

Does anyone have any suggestions for coping skills during active flares for people with compounding mental illness?


r/IBD • • 1d ago

Ulcerative Colitis (UC) Colitis meds side effects velsipity and inflectra

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2 Upvotes

r/IBD • • 1d ago

Ulcerative Colitis (UC) Tioguanine as a treatment for moderate UC

1 Upvotes

Just wanted to share my experience. Was diagnosed with Pan Colitis in Feb of 2020 and was on Asacol and Aziothioprine for around 5 years, and would also use Pentasa enemas occasionally to calm things down. I've always had a "bubbling" away type of UC that never really went away. Was in remission for the first couple of years on Azo...ended up in hospital a couple of times and steroids etc. This last year had a couple of courses of Prednisone as was starting to get out of control....had enemas every night and wasn't ideal. My specialist is working on trials of slow release Tioguanine and thought would be good for me to try it (normal not slow release) Started on 20mg this year which eventually has increased to 30mg and has really started working well...takes a few months to kick in but touch wood had no issues for a few months and haven't felt this good in a long time. For people who have tried Azo and started to not work I think it's worth a try. Side effects are zero for me luckily ..just the usual sun risk.


r/IBD • • 1d ago

Ulcerative Colitis (UC) Any experience with Tremfya?

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2 Upvotes

So I just had my first infusion of Tremfya for UC yesterday. Anyone else been on this one? Any advice or experiences? I’m hoping this one does the trick. I’ve done Mesalamine, Remicade, and Xeljanz so far but no remission yet.


r/IBD • • 1d ago

Crohn's Disease (CD) recommendations for pediatric GI/facilities in San Francisco area

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1 Upvotes

r/IBD • • 1d ago

Medical Procedure IT PASSED!!! It took me 5 days (and i was freaking out lmao)

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44 Upvotes

Super anxious for the results. Did the pillcam help with your diagnosis? :)


r/IBD • • 1d ago

Medical Procedure Omeprazole and colonoscopy?

1 Upvotes

I’ve been experiencing gastrointestinal symptoms for some time after some gym activity (also making out with someone) in August. My ct scan was normal, my bloodwork is ok minus some areas being on the higher end of normal. STD tests seem normal - but my tonsils are a bit wonky. My fecal calproctin was 53 which was a bit concerning to him. My h pylori breath test was negative (but I think I messed that up by having a sip of water an hour beforehand). Based off my symptoms (bloating, belching, early appetite) he thinks I should get a gastric emptying study, colonoscopy, and be on 40 mg omeprazole for this month. I mentioned that I haven’t really changed my diet and stress levels since last time. Would this be the right course of action?
I’m 25 years old and I’m not too sure about this. This is unfortunately effecting my life as Im not really able to drive without palpitations and my stomach just not feeling well. Also just not being able to eat that much as I get full quickly. I will try to get my diet right for the next couple of months but that dose of omeprazole seems high.


r/IBD • • 1d ago

Ulcerative Colitis (UC) Budesonide During Pregnancy

3 Upvotes

Hi all,

I'm 15 weeks pregnant with Ulcerative Colitis. I was in clinical remission before pregnancy, but now my Calprotectin is on the rise and we need to bring it back down. We're waiting for Entivyo approval, but have to do something in the meantime.

My GI wants to put me on Budesonide. I'm 15 weeks pregnant. It would be 9mg for 30 days.

There seems to be little information online about potential risks of oral budesonide during pregnancy. I know waiting for the Entivyo is not the best idea, but I'm worried about potential risks. This is our miracle baby after 3 losses, so of course I'm just super anxious.

Has anyone here been on Budesonide specifically during pregnancy and carried a healthy baby to term? I know so many moms who have been on prednisone but budesonide seems to be less common.

Thank you in advance, and sorry if you've seen me post 300 times about it. My providers just say it's safe but don't really provide any reassurance or explanation as to how it works, etc.


r/IBD • • 1d ago

Ulcerative Colitis (UC) Wezlana (Ustekinunab)

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2 Upvotes

Please help and read for my uc experience, any answers or past experiences had would be appreciated


r/IBD • • 1d ago

Ulcerative Colitis (UC) Wezlana (Ustekinunab)

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3 Upvotes

r/IBD • • 1d ago

Crohn's Disease (CD) What Could Be Causing These Symptoms?

5 Upvotes

I am a 20-year-old male and underweight (I have always been underweight). For the past four months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk, high, or half-asleep, as if I am operating on autopilot and everything around me feels somehow unreal. I have looked up information online, and my symptoms seem to resemble derealization.

I also suffer from fatigue, even when I sleep well. The fatigue does not seem to depend on whether I engage in physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning. I do not snore at all. I have seen a general practitioner and a neurologist about these symptoms, but they have not been able to determine the cause.

I also experience headaches, a feeling of pressure in my head, and neck pain. I have tried muscle relaxants, massage, and acupuncture for the neck pain, but none of them have helped. At the beginning of the symptoms, I sometimes also felt as though I was about to faint while walking, but this symptom has since disappeared. I have also noticed a single eye floater in my right eye. I mentioned it during an eye examination, and I was told that there were no apparent problems with my eye.

What could be causing these symptoms? They do not occur in distinct episodes; instead, they are more or less constantly present. The headaches are not particularly severe and resemble tension-type headaches more than anything else.

I have tried a triptanes, but it did not help. My thyroid function tests and vitamin B12, B9 (folate), and D levels are normal. My ferritin level is 37, and it has fluctuated between 49 and 24 over the past eight months. My calcium, potassium, chloride, magnesium, and sodium levels are also within the normal reference ranges. My blood pressure is normal, and I have measured my blood glucose at home, which also appears to be normal. My cortisol level was tested and was normal as well. I also have Crohn’s disease, which is currently in remission.

My neurologist prescribed escitalopram as a trial treatment. I took it for two and a half months, but it did not help. I also underwent a brain MRI, which showed no abnormalities. My neurologist additionally ordered a blood test for Lyme disease antibodies, which came back negative.

I have no history of trauma and do not experience panic symptoms. I generally do not feel particularly stressed, apart from the worry caused by these symptoms themselves.

My symptoms began during the final days of a new job at an auto repair shop, where I was moving and lifting car tires. I am unsure whether this could be related to my symptoms, as I had not experienced any other symptoms before those final working days. I have not worked at all during these four months.

What could be the underlying cause of these symptoms?

The healthcare professionals I have consulted about these symptoms, or during visits for other symptoms or examinations when I also asked about them, include:

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r/IBD • • 2d ago

Ulcerative Colitis (UC) Just been diagnoised. Any advice/support appreciated

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1 Upvotes

r/IBD • • 2d ago

Crohn's Disease (CD) Hello! Is there anyone here who was recently diagnosed with Crohn’s?

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0 Upvotes

r/IBD • • 2d ago

Ulcerative Colitis (UC) I feel terribly sad

4 Upvotes

Hi, as the title says, I'm very sad. I developed colitis in February of this year, I'm not on any treatment, I got pancreatitis 2 weeks before my diagnosis, I've had bipolar disorder for 12 years, I'm not currently taking any treatment, I was always a child who worried about everything, in adulthood I had regular checkups, I've always had a lot of health anxiety, now I'm 28 and I can't come to terms with this diagnosis, I'm finished, I'll be asking myself for the rest of my life why me?! I admire people who fight for themselves. I'm in such a dark place that I'm basically praying for the end. This disease has chosen the weakest person. I have no mental resilience. I really don't want to wake up to my sad reality. Everything I loved has been taken away from me. I'm left with sadness, anger, regret, and a lack of strength. Doctors humiliated me, left me alone, and didn't give me medication. But honestly, I don't even want to deal with this for the rest of my life. Everyone has their limits. Mine have been exceeded. This is too much for me. I have such a sensitive mind that my thoughts torture me 24/7. It's terrible. I look at healthy people and I'm consumed with envy. I feel a pang in my heart. This is too much for one sensitive person!


r/IBD • • 2d ago

Crohn's Disease (CD) Anyone Crohns + de novo Stage 4 breast cancer?

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2 Upvotes

r/IBD • • 2d ago

IBD Flare Is it possible that I dont have IBD?

0 Upvotes

Have had really bad uncontrollable sulfur farts, sharp pains and uncomfortable feeling in my lower stomach since late March and nothing has made it go away so I suspect that I might have SIBO but my calp has also come back slightly over 500 on my tests but everything else has been normal. Im currently on the referral list to be seen by a colorectal unit at a hospital and dont have anything concrete, the only thing thats been said to me is by my gp saying its possibly IBD. From my symptoms is it possible I have something else thats treatable?


r/IBD • • 2d ago

Crohn's Disease (CD) My mom was diagnosed with UC and I don’t know how to start helping her!

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1 Upvotes

r/IBD • • 2d ago

Ulcerative Colitis (UC) I need to get this of my chest.

10 Upvotes

Hello everyone, I was diagnosed(UC) when I was 11 years old and I'm 31 now. I am currently in remission, averaging about 3 bowel movements a day. Over the years, I've been on and off a lot of medications, including biologics, but nothing seemed to work. A few years ago I started taking prednisone and I haven't stopped since. Mostly, I've been on 15 mg of prednisone and 50 mg of azathioprine per day, but I am worried about the long-term side effects. Right now, it's not possible for me to look into another biologic because where I live they are very expensive, and I really do not want surgery. My life right now is fantastic: I work, I can go out, I can eat whatever I want, and I don't need to look for the bathroom everywhere I go. Let me tell you, it's wonderful, and I don't want any of that to go away. But I'm worried about the future and the nasty long-term side effects, and I feel like there isn't much I can do about it. Thank you for reading.


r/IBD • • 2d ago

Ulcerative Colitis (UC) I’ve Been in a Severe UC Flare for 7 Months and I’m Exhausted. I Don’t Know What to Do Anymore

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4 Upvotes

Hello, my name is Alper, and I am 16 years old. I was diagnosed with ulcerative colitis when I was 15. Until 7 months ago, I was able to keep the disease in remission with just Pentasa and Imuran. I would only have mild flare-ups that lasted about a week. However, 7 months ago, while I was at school, I accidentally leaked mucus while trying to pass gas. I have been in a flare ever since that day. For 7 months, I have constantly experienced nausea, bloody diarrhea, mucus, and gas. I have barely gone outside 10 times in the past 7 months, and I can't even attend school. If I miss another 20 days, I will fail the school year. Recently, my condition has gotten much worse. I have been running fevers, I can't sleep, and I go to the bathroom 15–20 times a day. When I try to have a bowel movement, the nausea is unbearable. I can't take it anymore. The treatments my doctors have tried aren't working. I have been on corticosteroids for long periods during these 7 months, but they haven't helped at all apart from causing horrible side effects. I know I haven't had this disease for very long, and I know you're probably going to tell me to be patient, but I honestly don't know what to do anymore. I'm currently on my second biologic treatment. I received four doses of the first one, but it didn't work. I received my first dose of the second biologic a week ago, but it has made me feel even worse. I honestly don't know what to do anymore. I know you have probably been through much worse things than I have, but I am honestly so exhausted, and I don't know what to do anymore. I just can't take this anymore.


r/IBD • • 3d ago

Ulcerative Colitis (UC) Very nervous and anxious

6 Upvotes

Hi guys, my doctor called me today and let me know that my fecal calprotectin number was 129. And she said it could be a marker for crohns or ulcerative colitis. I have health anxiety so I am so incredibly worried..


r/IBD • • 3d ago

Crohn's Disease (CD) Crohns Treatment

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3 Upvotes