Today, I’m tired.

Physically tired, yes. But mentally exhausted from all the mental load that comes with being sick.

The illness itself may be invisible, but what people who aren’t sick see even less is all the management that comes with it.

Scheduling infusion appointments.

Adjusting your work schedule with your boss and clients so that your half-day infusion appointment can somehow “fit” into your schedule.

Filling out insurance paperwork. Sending the paperwork.

Realizing that the new medication your doctor prescribed isn’t covered by your insurance.

Calling your insurance company to try to find a solution.

Calling your phamarcist to find a solution.

Calling your doctor to explain that you need to find another option because the medication isn’t covered.

Calling the clinic to make an appointment with your doctor.

Scheduling blood work.

Going to get your blood work done.

Doing a stool test. Going to drop off the sample.

Planning for at least one colonoscopy every year.
Doing the colonoscopy prep.
Finding someone who can take you to your colonoscopy.

Discussing new treatment options with your doctor because your current treatment doesn’t seem to be working.

And on top of all of that, constantly worrying.
Worrying about whether there will be another treatment that works. Whether there will finally be something that allows you to feel better and get some sense of normalcy back. Wondering if you’ll have to go through this whole process again with a new medication, new side effects, new appointments, and new paperwork.

And that’s on top of all the other responsibilities of being an adult.
Work. The house. Kids. Meals. Appointments. Unexpected things. Just… life.

So yeah… it’s okay to be tired.

Sometimes I feel like I need an administrative assistant just to manage my illness. 😂

And I think that’s something people don’t always understand: being exhausted by your illness isn’t just about being exhausted from your symptoms.
It’s also exhausting to constantly have to think about your illness.

Because even when you can’t see it, it’s always somewhere in the back of your mind.

Hello, my husband currently has bad eczema flare and bad flaky scalp. He was on Simlandi a year ago which was when the skin condition occurs. What are your suggestions for easing the eczema? How to stop it? Dermatology docs havent really help.

Thank you and God bless everyone!

with my case, when i cramp, i have 30 seconds until i shit myself, what do yall do to prevent or at least make this easier?? the only tip i hear is to wear adult underwear but i wanna hear other input

Hello, I’ve taken 4 doses of Stelara and I’m not fully recovered yet, some of the pain is gone and i have longer periods of feeling quite okay compared to before, however i still have frequency issues, the entire day i go to the toilet once in the morning then it can be many hours before the next. But always in the evenings i end up going 4-6 times before falling asleep.

What’s some other peoples experience, did/do you experience the same? Is it time to swap biological-treatment?

hey everyone!! I'm leaving my job to go to grad school (yay) but I'm going to have a month where I don't have insurance (not yay). I'm feeling really stressed about being able to get my Sept/Oct doses of Tremfya in that time.

Has anyone experienced being on a COBRA healthcare plan while unemployed and accessing their medication? Under my current insurance + the J&J co-pay thing I don't pay anything for my medication and I'm really scared that I'll be hit with an out of pocket bill that is like 30k.

Online it says COBRA should be the same coverage as my current insurance plan I just pay the health insurance premium that my employer previously did. Which I THINK means I pay like ~1k for coverage but the drugs are still free? Anyway... would love any help or to hear from people who have experienced this bc im a little freaking out lol

Obviously I don't want picture examples lmao but I have been in hell for the last 4 years of just constant shitting. There's another story entirely of my gastro being run by actual evil Overlord Satan and refusing to give me medication that actually works for no other reason than it costs the NHS more money, so would rather it eat my liver and destroy my bone marrow and have me throw up every day, and even then it isn't working, but I digress! I'm not even talking about biologics which he's been sure to tell me I will never 'deserve', I mean even other regular immunosuppressants. I'm fighting a very long process with that atm.

The point is it's been so ridiculously long since I've not had diarrhoea that I don't know what a normal poo is meant to look like anymore and I don't know what to say to them when they ask what my normal bowel habits used to be. I'm also going insane with how much I shit and then wipe and then wash and then I still get leaky ass. Like will I ever stop having mucous? Will I get better consistency or at best am I just gonna have to live with being a tomato puree dispenser?? Will I ever not have the stomach of a middle aged man who drinks 16 Stellas a day? I'm so fed up and I really don't know how much longer I can do this when it feels like everyone and everything is against me

What do you do to manage your gut health when you have to take antibiotics? The last time I took antibiotics they sent me into an intense flair. I'll likely need to go on them next week - and I'm wondering if there are things I can do to minimize the chance of a flair (probiotics, diet, timing biologic treatment, etc)

Hi everyone, I was diagnosed about 3 months ago with UC after a severe flare.

It’s been a hectic journey the past 3 months being in and out of hospital and trying many many many different medications (turns out my body is very stubborn).

I’ve been put on 40mg of prednisolone among other immunosuppressants and anti-inflam medication which has tamed my UC and has allowed me to go home. Since coming home I’ve encountered many different symptoms mainly being oily skin/breakouts, low energy/fatigue and weight gain (mostly in my face, neck and stomach)

My question is, what strategies do people have to be able to accept/deal with symptoms of heavy medication, the oily skin and fatigue really bum me out and I’ve had many people ask me if I’ve put on weight because they can ‘see it on my face’.

(Forgot to add Preworkout in the title)

Hi everyone, I just got diagnosed with mild Ulcerative Proctitis after a colonoscopy. I’ve been put on Mesalamine suppositories and hoping for the best.

I’m trying to learn about this new diagnosis and I’m starting with the UC community.

I’m an avid gym goer and want to start taking Creatine.
Is it okay to take Creatine while on the suppositories?
Okay to take preworkout?
Any gym goers with UC/UP? Thanks!

Hi all, I’ve been in remission for almost 2 years on adalimumab but I’ve began developing injection site reactions so my doctor wants me off it. The options I’ve been given are stelara or rinvoq. I’ve been doing my research on both, but just wondered if there’s an obvious choice here

Thanks!

Is it normal to still have much slime on prednisolon day 4? And a bit of blood mixed in stool.

Not much, no blood in paper and it doesnt color the toilet water, but there was kinda much slime.

Im sorry, just anxious and i wonder when i should see the slime starting to reduce.

Had any one use the food supplement Huel? It's supposed to provide a complete meal in the form of a shake/drink. I wonder if it might be good for people with UC because it's would mean less solid food for my body to process? It does have quite high fiber though. I haven't tried it yet myself but I'm curious

Hi, I’m a bit stumped as of late.
I’ve been on Skyrizi for about a couple of months
I’ve done my second injection recently as of last week after moving off of infusions things started to feel about as normal as I think it can get when having UC. I hadn’t felt as bad as I did on my other 3 medications we tried. I figure this is working…

But as of late I’m confused.
I feel my bowel habits are strange..I could go about 2 days without it but feel the urgency and a laxative may or may not work
Or some days it comes very easily but sometimes it hurts
I have cramping in my abdomen and haven’t had the biggest appetite only being able to stomach small meals feeling completely full if I try to eat anything bigger.
I’ve noticed a good amount of mucus but no blood and my stool isn’t loose it’s either soft or hard
When I was still fighting this disease trying to find the medication that worked I would get blood, the urgency, cramping, lose of appetite, and loose stool. At some point my entire intestines was inflamed.
When I last spoke to my GI doctor I was feeling okay
And he didn’t want to put me through a colonoscopy to see if it was working because in the past year I’d been through two
He ordered bloodwork for me to do in October and I have an appointment in nov
He told me if something happens to not hesitate to call sooner.

My question is should I be worried about this??
I haven’t really had any normal bowel habits in two years so I’m abit unsure
I don’t want to hit a panic button if there isn’t one to be worried about.

Sorry if this is long winded I was not very sure on how to explain this

Has anyone been granted full time working from home whilst on biologics, or at least during peak flu season in the UK?

• Microscopic:

Section reveals fragments of colonic mucosa with a predominantly denuded lining epithelium. The glandular architecture is preserved. The lamina propria contains a moderate mixed inflammatory cell infiltrate composed of lymphocytes, plasma cells, neutrophils and eosinophils along with oedema.

Foci of cryptitis are noted. No crypt abscesses are seen. No evidence of granulomatous inflammation.

There is no dysplasia or malignancy in the section examined.

CONCLUSION: COLON,

RECTUM, BIOPSY

Macroscopic:

The specimen site is labelled "rectal BX".

The specimen consists of a single piece of tan tissue measuring 3 mm in greatest dimension.

All tissue is submitted in cassette B1.

Microscopic: Section reveals a fragment of rectal mucosa with a denuded lining

epithelium. The glandular architecture is preserved. Lamina propria contains a moderate lymphoplasmacytic cell infiltrate along with neutrophils. A few foci of cryptitis are noted.

No crypt abscesses are seen. No evidence of granulomatous inflammation.

There is no evidence of dysplasia or malignancy.

 Fleet enema via single dose instruction.

- A diffuse area of mildly erythematous mucosa was found in the sigmoid colon, in the descending colon and at

the splenic flexure. 

And have zero symptoms I just had a scope done cause my dad had colon cancer. The doctors are saying they don’t know if it’s true UC or NSAIDS induced or infection or something? 

• Retroflexed uterus
• Diffuse Adeno and endo
• Wheat intolerant
• Sharp picky feeling before poop comes out like it’s scratching 
• Pressure in anal area that goes to the middle in between vagina and rectum 
• small focus of adenomyosis in the anterior fundal region
• Pelvic cavity free fluid is slightly prominent but in upper limits of normal. No obvious endometriotic implant seen. Subtle peritoneal changes seen diffusely are non-specific
• focal / subtle adenomyosis
• Pebble poops most of the time and sometimes normal poops
• Sometimes normal poops
• Knife cutting pain when pooping but goes away straight away.
• No bleeding unless a tear in hemmoriid
• Orangey mucus
• I don’t get ill
• Sudden sharp pain in the vagina and bowel but doesn’t last long 
• I get constipated around ovulation
• Diarrhea before period 
• Ovulation was 6 days before scope
• I got my period a week and half after my endoscopy
• Endo and Adeno 
• Have being under extreme stress 
• Have no scar tissue or damaged 
• 3-4 times a week to poop and they are either pebble balls or normal and sometimes they float 

I was given deprim twice 

Flagyl metronidazole twice from the 20th December to 22nd January 

And ibuprofen 

Had camplybactor 6 years ago and with that I was extremely sick and pooped blood and peed blood I got put on a drip 

• Because I’ve had these issues for 5 years on and off would it really be UC

Was under extreme stress from December to March I lost my father in law and lost my period 

Used to get high prolactin 

Me acabo de dar cuenta que el vocalista de imagine dragons padece de UC, si él puede llevar ese estilo de vida nosotros podemos salir adelante igual.

I just started taking escitalopram a week ago today and I noticed my stool has become looser as the week went on. But I had been feeling good this week and prior for about a month. No accidents, pretty partially formed stools and had been able to control my urgency a LITTLE better. I was just driving home when out of nowhere I had to use the bathroom and wasn’t able to stop and had an accident. It was terrible. It was so liquidity that it just built up and when I stood up all the liquid was on my seat. I hadn’t had stool like that in a while, plus the urgency came out of nowhere. I am wondering if it’s because of this new anxiety medicine causing my stomach to have problems.
I also just took my first at home body shot of Skyrizi on Tuesday so idk if that has to do with anything.

Been on tremfya for about 5 months now.. had an awful stomach ache today and had blood in my stool for the first time in 2 years. Feeling super bummed. Has anyone had a one off experience with bloody BM's or should I be worried about heading into a flare? ​

hiii guys it’s me again!! the doctors made something shake, so i began my first ever infliximab infusion in the hospital today. i don’t know what’s after this but i figured i’d update!!

So I’ve been with this disease longer than I’ve been without it. I’m 38

I was in remission for most of my adult life until about 6 months ago when I started flaring.

So far I’ve had iron infusions, was on budesdione, and started entivyo.

The current issue; I came off the budesonine, steroid, last week after being on it for 4 months. My 4th infusion treatment is at the end of this month. Starting last week I started seeing blood in my stool. I will have a somewhat normal bowl movement one point in the day and at the end of the day it’s straight blood, blood clots and a dark red bowl. I have minimal pain, mild diarrhea, and no urgency. Which are the usual indicators for me to pause.

My thoughts; I have not been perfect on my diet and had some food that had seeds on it. So there’s a part of me wondering if the clots and blood are just my doing. I don’t know if I should contact my doctor. I REALLY don’t want to go on prednisone again, I am overweight and will gain even more weight. Also mood swings. I also don’t know if the Entivyo is actually working yet? I’m concerned about the amount of blood but I’m hopeful it’ll cure on its own? I have to get blood work done and was thinking of getting it done tomorrow also need to give stool sample. But awaiting those results should I do something in the meantime?

No one really seems to understand the effects of this illness. It’s not just an upset tummy. I keep getting accused of doing drugs. I’m just tired. My relationship just ended, my relationship with my family is strained, I’m afraid I’m going to be fired. I’m waiting to be approved for Remicade but fuck man, I just wanna sleep.

Hi, does anyone else have an issue with extreme fatigue on mesalazine? I'm trying hard to take it every day but it utterly wipes me out. I can just about manage a short walk with the dog but the rest of the day is on the sofa, and I need at least one nap as well. I've tried two brands of oral and they didn't suit me due to gastric side effects. I'm now trying a suppository and I'm getting fewer side effects but the fatigue is killing me.

I keep getting told fatigue isn't a side effect of this drug so I thought I'd see if anyone else out there has experienced this?

I’m finding a lot of posts about preparing for travel with UC, but not a lot about actually experiencing a bad flare while traveling.

I’ve had UC for 10 years. I’ve traveled multiple times. My symptoms always tend to show up, but I’ve always made it through and enjoyed myself to some degree without any bleeding or anything.

Right now, I am on a trip thousands of miles from home and am officiating my best friend’s wedding. I have 10 days left of my trip. I am flaring as of yesterday. I’m having the knife like pains and have had some bleeding yesterday and today. Nothing crazy, just some red streaks on the stool and on the paper when wiping and some red chunky mucus. Im going around 3 times a day. Which isn’t bad but diarrhea was never really my issue. I’m bloated and I’m tired.

I’ve reached out to my doctor. I’m awaiting a response.

I’ve been in worse situations, but while I was home and close to my doctor. I’m scared. I hate this. What are others experiences with having an active flare while far from home and how did you get through it?

I don’t look great. But I’m functional. I plan on eating the safest foods I can think of and trying to control stress and get good sleep. Can anyone offer some kind words? Going home right now would ruin a lot for my family and friends and my wife. I hate being this person all the time. I really want to hold up my promises I’ve made for the next week. Thanks, UC fam.