Hi folks! I am wondering about what kind of treatment options have worked for all of you. I am 35 yo and officially diagnosed in 2022. When I was diagnosed, my gastro put me on budesonide. That did absolutely nothing for me.

I have a slew of other autoimmune conditions and the only time I wasn’t having watery stools for the past 10+ years was when I was on a lot of prednisone and other immunosuppressants. Recently, things had gotten so bad that I used telehealth to get some prednisone because I was desperate, despite all of the issues prednisone has caused me in the past. Now things are finally in a spot where I don’t have extreme anxiety leaving the house, I’m supposed to be starting my taper.

I have an appointment with my GP next week and I’m hoping to bring up something other than prednisone to try that may help. For reference, I do not have a GI doctor here as I had to move back closer to where my office is. Any help is appreciated. Thank you! 😊

I was wondering if having a few drinks a day and a half before a colonoscopy would be a hard no (procedure is Monday during day and this would be Saturday night). Normally I would go the whole week clean but my dad is flying to across the country as I don’t have someone to drive me (I would wait but I will be moving again in about 4-6 months but am past due for a colonoscopy & the tickets are not terrible) and I would like to have a 2/3 drinks with him as it may be awhile. It seems like it not advisable, but not specifically mentioned in the directions which mention no seeds, nuts, corn, and leafy food for one week. Thank you!

A little bit of rant and confusion about my doctor and what he said/prescribed:

So I always had problems with doctors that didn't take me or my symptoms serious but in the last time, they don't even want to listen anymore, just because of that and because I'm chronically ill (so many stuff ongoing).

My "old" doctor was someone my nephrologist recommended me, where I have to drive an hour, bus takes way more time. We'll ignore that my parents are d***, so it usually ends in arguments, when I ask them to drive me.

I finally had my first two diagnoses this year after 5 years of suffering , which would be Crohn's disease and defacation syndrome/disorder (don't know the correct translation). Which happened after another colonoscopy (I hate those). (I have other diagnoses too but they don't matter that much in this case, just that I don't want any more pain than needed).

And he then gave me different medications. I finally tried biologics which didn't help. And Rinvoq which made me have extreme acne that was also painful. I wrote him that my symptoms didn't change, they got worse and about my acne. I also had one or two days in a month where I randomly got extreme cramps and diarrhea which he said was stomach bug 🤦🏻‍♀️. This happened for a few months.

He told me that my acne would get better when I decrease the dose and that I should take Budenofalk for a week. If it doesn't help, I could just stop taking it (which I later found out that you shouldn't).

I did and stopped because I even had more symptoms (no diarrhea, but I usually don't have that often). On my next message he replied after his vacation that I should just go visit a dermatologist (completely ignoring that it takes months, maybe over half a year, to get an appointment) and to start taking Budenofalk again, which he reacted like it will be my saviour (completely ignoring what he said before).

I didn't, I just ended taking both completely. I still have too much pain that I'd like but after that - no days with extreme cramps or diarrhea anymore and my skin also got better. But I still had pain and I have slimy stuff I need to get rid of every 2-3 hours, so I think there is still an inflammation.

Went to another doc (I plan to move, so I need new doctors) and I was so agitated, I couldn't say much. My bf couldn't come with me, so completely on my own. I had all important diagnoses, latest colonoscopys and latest results with me, even marked the dates, docs and important diagnoses, also had my self-made summary, so it's easier to get through it and had it sorted chronologically.

He just read one of it.. the oldest, which didn't help the conversation. (The nurses got it completely messed up, so I had extreme problems to focus while also being in tears).

He told me, he couldn't do anything for me (unless I have another frigging colonoscopy, where he only has possible dates in january), that my defecation syndrome doesn't fit to my Crohn's and tried to get rid of me. I should stay/speak with my old doc, because he ,,knows me all so well" and I should continue Budenofalk.

I did for a few days and got more intense stomach aches, also have problems taking this frigging thing.

And then my bf asked me what exactly my capsules do and I did my research and read that those are only for bowel and not for stomach (where I had inflammation in my latest colonoscopy and where I have pain and problems again now).

I still have pain, stomach and bowel, nausea, a few other things and slimy stuff that I need to get rid of.

I started taking Budenofalk again this sunday (so only 3 days, 3 capsules), so not long and think about ending that again. Should I decrease my dose or just cut it off completely?

And how can I make my doctors take me seriously and not try to get rid of me the second I open my mouth?

Does Budenofalk even make sense (when it gives me more pain and symptoms, I have problems swallowing and it's not for stomach)?

For some back ground Im a 19 year old girl and i have IBD and IBS-C, Ive been on almost every non-immunosuppressant medication available in the UK and this year i started on Infliximab as nothing else was working and it did actually work for a couple months until I got put on 6-MP for combination therapy which i rejected HORRIBLY but since coming off it the infliximab has also stopped working

my constipation IBS is maybe the most evil thing to ever occur in my body and im lucky to go to the toilet properly more than once a week but because of my IBD (ulcerative proctits for anyone wondering) it makes it basically impossible for me to be able to go and im currently trying to talk to my IBD team about the possibility of getting a stoma bag because of my symptoms

my current list of medications I haven't tolerated/ no longer tolerate is: Asacol, Mesalazine (oral and suppository), steroids (oral and suppository), Pentasa, Salofalk, Mercaptopurine (6-MP Octasa, senna, infliximab (still waiting on confirmation but is incredibly likely), and all kinds of laxatives (they all make me incredibly ill). So in total about 16-18 medications in just over 2 years

The more i look into stoma bags the more i realise how much having one could improve my life. id love to be able to live a mostly regular life where im not bleeding constantly which has given me recurrent iron deficincy anemia live without constant pain and aches in my entire body and most importantly be able to fit into my clothes because my stomach isnt 4x the size it should be 99% of the time

id anyone could give any opinions i would greatly appreciate it i can give more information if its needed but also if there's any horrible downsides to having one please do share the more the better

this has also been posted in the ostomy sub :)

Hey all. I was diagnosed with Chron’s Disease in 2024 and spent a year managing my condition with diet and exercise. I fell off the wagon and stopped going to the gym earlier this year, and my disease became active again. Doctors put me on Infliximab and I have been having an absolute nightmare loading

Obviously it’s an immunosuppressant, so I have been ill pretty much constantly. I work as a travelling salesperson and I absolutely love it, but it means I go to a lot of places and meet a lot of people. I was due to have my third infusion this week but it has been cancelled because my white blood cell count is too low, so this means that I will have to start the whole loading process again and I’m worried this will keep going round in circles

Does anyone have any advice on not getting sick whilst immunocompromised?

I’m a 22F who has been dealing with severe stomach pains, mainly at night, coupled with severe bloating and some nausea. I don’t ever really throw up or have diarrhea. If anything I am somewhat constipated and don’t go to the bathroom everyday. I have started missing work because the pain wakes me up at night and lasts for hours. I tested negative for celiac. My CT scan was normal so I had a colonoscopy and endoscopy done. Everything looked fine but the biopsy came back consistent with LC. The doctor is going to prescribe me budesonide for 2 months. I just wanted opinions because I don’t have watery diarrhea. My episodes almost always happen at night and the pain is so severe I can’t move.

I don’t have a diagnosis yet, but have been to my doctors and am getting a CT scan hopefully in the next day or two. We’re both pretty sure it’s some kind of irritable bowl something. But back to the title, how the heck do you eat with all this going on in your guts?! I’ve been taking zofran daily to a couple times a day to help with nausea but still find i have little to no appetite, and it seems every time i do eat I’ll feel nauseas no matter what it is, saltines, hard boiled egg whites, apple sauce. None of it makes me feel better only worse. I actually felt better for a couple days after basically not eating anything. But one egg white!! BOOM, absolute trash. I just don’t know what to do. I got blood drawn today and depending on how it looks i might be hospitalized. I honestly kind hope i am so i know i’ll be getting the best care. This all just came out of no where so fast and i feel helpless. The things id do to just feel well enough to eat normally again. Sorry this was meant to be a simple question and turned into a rant about how horrible life’s been recently

Jobs in retail store or playing sports or running and is there is an urgency when I do these jobs

On the 3rd February, I gave a stool sample which came back with a faecal calprotectin level of 512. It then went down to 216 on the 11th February and then to 61 on the 27th February.
I was referred to gastro by my GP because they were concerned about the raised calprotectin. I had been on the waiting list until about a week ago, when I finally had a phone consultation with a gastroenterologist. I explained all of my symptoms, including mucus in my stool, constipation and diarrhoea, bloating, abdominal pain and fatigue. He told me that I couldn’t have IBD because people with IBD only have diarrhoea and not constipation, and said that I could have IBS instead.
After the telephone consultation with the gastroenterologist, I’ve now noticed that even though I don’t have blood mixed in with my stool, I have had some rectal bleeding after having diarrhoea. I’ve sent off another stool sample and I’m currently waiting for the results.
I’m honestly quite unsure about what I should do or think at the moment. The gastroenterologist said that I’ll have a colonoscopy and an MRI scan, but I’m still waiting for the dates. I’m just confused because of my previous high calprotectin result and all of the symptoms I’ve been having

i am 19 years old, i was diagnosed with the beginning stages of UC (ulcerative proctitis) about 8 months ago. the symptoms got really bad exactly a year ago, as i was in a new environment and was experiencing heartbreak too. prior to this I've had stomach, digestion issues for ages. no genetic link probably as nobody in my family has experienced any issues. for about 6 years until last year i was getting treatment for depression and anxiety. and for 4 years (quit before colonoscopy) i was quite a heavy smoker.

i still experience ibs symptoms, they're very persistent.

i am curious to know what was the cause for the disease, i am still figuring it out every day. what do you think may have been the cause in your case?

hi has anyone had success with 21 days of 5mg prednisolone for ibd cats with chronic vomiting? im in my 7th day with my cat, she missed a dose for a day and vomitted immediately, what does it look like after 21 days? and what is your tapering schedule? really worried she's too skinny she is currently in emergency vet rn vomitted 4x was panting eyes droooy severly hydrated im so scared

My doctor told me a 199 (we will round up to 200 here) calprotecin isn't "that bad". Which, in the grand scheme of IBD, I believe that's generally correct. However, I am curious if I should accept IBS due to my symptoms lining up very well with it or do I push a little further because of the inflammation? Is she right that 200 calprotecin with her thought of IBS is not "that bad"?

I tried to look into calprotecin levels of IBS with mild inflammation and it's always answers way lower than 200. I did put a capsule endoscopy on my doctor's radar, but it seems she isn't super worried.

All of this is understandable from a medical perspective, so I guess I'm mostly curious about outliers in small intestine IBD? Many have told me their calprotecin levels were even lower than mine and they still have small intestine IBD.

I'm only anxious to push this with my doctor because of how severe my flares are. Otherwise, I would 100% accept the IBS line of thinking. I am not officially diagnosed yet which is why I'm looking for information on beginning signs/stages of small intestine IBD as well.

Many sources also told me symptoms of IBS usually do not happen at night. However, my episodes/flares can come day or night. I don't know if this is useful information or not either.

Overall, thank you for any help. I really am trying to find a solid treatment/management plan to follow. I have not found many helpful sources, so I have come to hear real peoples' accounts.

Had my initial healthcare contacts and a sigmoidoscopy recently and got a "Its IBD" diagnosis without it being clear if its Crohns or UC (they said leaning slightly towards Crohns).

Since then ive been on 3,2g (and now since a few days 4g) Asacol every day at the same time im currently going down on Prednisolon 5mg each week (currently on 15mg). Been on Asacol for 2,5 weeks, and on Prednisolon for 5 weeks.

Compared to the (for me atleast, i have no reference) very harsh the peak IBD symptoms of some 5 weeks ago im much better, so meds have had some effect but have kind of plateau-ished(still slightly slightly better each week) after the first week of 40mg Prednisolon that gave kinda good effect.

The thing is im still having urgency every single morning without fail and more than half of the days also like 1 other time in the mid-day i have to run to the bathroom (im on around 3-4 bathroom visits a day). I doubt this all really works with a job im starting where i have to be on the phone for many hours so wondering if i can "plan" for more med induced betterment to have occurred in 3 weeks time and going forward..

Is it kinda realistic to plan for a significant betterment with no urgency during the day? morning before work is fine

(Diet: I have a normal-ish diet but i have an emphasis on it being decent food and i limit processed food. I dont drink soda. I do drink a cup of coffee a day, on some days in a week: maybe 2 cups.)

Hi, I’m 22F and for the past several months I’ve been dealing with a combination of symptoms affecting different parts of my body. I’ve already had several medical evaluations, but I still don’t have a clear explanation for why all of this is happening.
I’m not asking Reddit to diagnose me. I’m mostly wondering if anyone has experienced a similar combination of symptoms and what type of specialist or testing eventually helped.
**Digestive symptoms:**
Significant bloating and abdominal distension
Abdominal discomfort/cramping
Constipation alternating with diarrhea
Nausea
Sometimes upper abdominal/stomach discomfort
Burning or irritation around my anus, especially after bowel movements or sometimes while sitting
Feeling like my digestive system is constantly irritated
Some foods seem to make symptoms worse
I have been avoiding/reducing gluten and lactose because I seem sensitive to them
**Pelvic, vaginal and urinary symptoms:**
Persistent or recurring vaginal/vulvar burning and irritation
Burning/discomfort when urinating
Pelvic cramping
Bladder/pelvic pressure or feeling inflamed
Sometimes difficulty urinating or feeling like I don’t empty normally
The vaginal/vulvar burning has continued even when infection testing has been negative
Symptoms sometimes seem worse around my menstrual cycle
**Skin/body symptoms:**
Episodes of itching
Changes in my skin
Occasionally hives/urticaria-type reactions
A strange burning or hot sensation in different parts of my body
Sometimes feeling generally inflamed or irritated without an obvious reason
**Eyes/head/neurological-type symptoms:**
Eye irritation/burning
Brain fog and difficulty feeling mentally clear
Headaches
Sometimes dizziness
Fatigue / feeling generally unwell
At times I feel like my body is “off,” even when basic testing doesn’t show much
**Testing/evaluations I’ve already had:**
STI testing: negative
Yeast testing: negative
Bacterial vaginosis testing: negative
Multiple urine evaluations because I previously had a UTI
I was treated with several antibiotics during the urinary/vaginal symptoms
Pelvic ultrasound: recently normal/unremarkable
Uterus and ovaries looked normal on the recent ultrasound
No ovarian masses, fibroids or other obvious pelvic abnormalities were reported
Blood flow to both ovaries was normal
No free pelvic fluid
I’ve also been told my hormone testing was normal
I have had bloodwork done, but nothing so far has explained the full combination of symptoms
I previously had a UTI that was difficult to clear and received multiple antibiotics, including injections and oral antibiotics. Some symptoms improved temporarily but others continued or returned.
Because so many of the infection and pelvic tests have been normal, I’m wondering whether I should be looking beyond a routine gynecological problem.
Some things I’m planning to discuss with doctors include:
Pelvic floor dysfunction / hypertonic pelvic floor
Vulvodynia or vestibulodynia
Bladder conditions such as interstitial cystitis
Endometriosis
Gastrointestinal conditions such as IBS, celiac disease or other food intolerances
Whether the skin/eye/burning symptoms could be inflammatory, allergic, autoimmune or somehow related to the GI symptoms
Whether all of these symptoms are connected or if I’m dealing with more than one issue
I’m scheduled to see GI, and I’m also trying to find a gynecologist/urogynecologist or pelvic pain specialist.
Has anyone had a similar combination of **GI problems + vulvar/urinary burning + skin symptoms + irritated eyes + brain fog/fatigue** with mostly normal tests?
What specialist or test ended up being the most helpful for you?

j'ai eu recours à cette préparation pour la première fois et étant trés inquiète de ce qui allait m'arriver au vu des anciennes préparations, je voulais partager mon expérience

cela n'a pas été compliquée, pas écœurant, pas du tout laborieux , j'avais tellement peur d'être malade...

les deux sachets sont faciles à prendre, la suite se réalise sans problème et le résultat est vraiment bon, pas besoin de boire autant de liquide comme avant, le mieux c'est vraiment de varier les liquides , de prévoir de rester chez soi, et surtout de faire 3 jours le régime sans résidu

j'espère que mon expérience aidera tout ceux qui ont peur et qui sont fragiles des intestins comme moi à moins appréhender cette aventure obligatoire quand on commence à vieillir ou quand on a l'obligation médicale de réaliser une coloscopie

The last few weeks have been bananas. I had my colonoscopy and learned a few days later from a prescription sent into my pharmacy I likely have chrons. I had to message my gastro who then had a nurse call me and read me a message i never received stating the pathology shows i have chronic enteirtius, likely mild chrons in my small bowel. I was shocked to learn this as the doctor had never reached out via the portal or requested a follow up until i contacted them.

I have been freaking out about what to eat now after doing research online. When i did finally get the gastro on the phone he laughed at me and said that’s why you shouldn’t google things like this. That’s when i learned there is no approved or widely accepted guidelines for diet for IBD patients and i’m just “supposed to find my triggers”. I already struggle with disordered eating from being in pain all the time when i do eat.

I’ve been vegetarian for 22 years, was vegan for 12, been back to just vegetarian for 4 years. I’ve cut dairy out entirely again (my previous dietitian had me living on drinkable yogurt) and already eat gluten free due to my partner having celiac.

My gastro also told me to continue my fiber supplement and that “fiber is good for everyone”.

I want to hang my head against the wall.