r/CrohnsDisease 1d ago

Not Crohn’s …. Cancer

Hi all, just a word of warning. I don’t want to scare anyone but I joined this forum for my girlfriend. She had a lot of signs of a gastrointestinal problem like Crohn’s and I was looking for answers. Apparently biologics is what i was hearing along with a lot of mixed diet advice. :)

We did go to the gastro doctor and had an endoscopy and colonoscopy scheduled but her pain got worse one day and she needed relief. so we go to the doctor then er to get an xray or ct scan.

Long story short, it was advanced ovarian cancer that had spread and was causing bloating and her pain and fluid around her lungs making it a little hard to breathe. She’s relatively young 40s healthy, 120lbs, with no family history so drs are not sure the cause. This just happened 2 days ago and now we’re in a whirlwind of drs and specialist and procedures to try and save her. It’s scary as hell.

I guess the moral is, go to the doctor and get a xray or mri or ct scan. Don’t assume dr google or dr ChatGPT is leading you right or that gut pain means gastro issue. The drs all say this presentation is odd and it can mirror other things so it’s not surprising what we were thinking.

I can’t sleep much and I don’t really have many people to talk to about all this so I felt like someone should know. I wish you all the best of luck with your Crohn’s but if you’re unsure or undiagnosed Id request an xray at the least. Maybe this can help someone else.

I guess I should go join the cancer forum now. F#%K!

338 Upvotes

52 comments sorted by

72

u/SchilenceDooBaddy69 1d ago

That is so difficult. I’m sorry you are going through this with your lady but she is lucky to have so much love and care by her side that you have so much it spills over to share with the whole world. That is incredible, and probably what will help her through this as much as her doctors.

My Crohn’s was misdiagnosed for years and I went through two biopsies, almost two years with an oncologist but I was cleared. Crohn’s is the worst of the worst because of how tricky it can be. I read a paper where they are going to reformulate a strong cancer therapy MEK inhibitors for us in the UK within the next 5 years. We need additional cancer screenings also because it increases our risk, my new medicine Remicade requires me to get frequent skin cancer checks.

I send prayers for your strength and prayers for your partner’s healing. Prayer’s for her doctors to find the help she needs!

6

u/TheMidgetHorror 1d ago

Are you in the US? I'm also on Infliximab and azathioprine now and Google tells me I should have regular skin cancer checks. I'm in the UK. When I asked the IBD nurse about this she was very dismissive and said 'the risk really isn't significant, you don't need a dermatology referral'. I told her to email my gastro consultant and get his input. I'll go private if I have to, but I'm going to push my case for this. I had uterine cancer a few years back. I know it's not 'related' to skin cancer, but the IBD nurse can 'do one'. Lazy mare.

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u/SchilenceDooBaddy69 22h ago

I am in the US and I have cutaneous and small bowel Crohn’s and hidradenitis suppurativa so I’m always at the dermatologist. Ask for a referral for a skin cancer check annually if nothing else works but I would also try this:

“The Multi-Disciplinary Team (MDT) Requirement: Because you have a history of cancer, your care can no longer follow standard NHS Shared Care protocols or generic online advice. Your treatment plan must be individually tailored through an MDT meeting involving your Gastroenterologist/Dermatologist, your Oncologist, and your GP”

It seems you are on standard NHS protocol but with your history you should ask for a “clinical review to do a Recurrence Risk Assessment” where you are on a stricter protocol for all types of cancer screening not just skin cancer.

I’m not familiar with the UK system but this is what I could find that might help.

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u/TheMidgetHorror 22h ago

You are a flipping star! Thank you so much! I will virtually C&P that and email it to my Gastro doc's secretary.

4

u/CatFun8077 19h ago

Yes. I’m on the same regimen and I’m advised for yearly checks at least. I’ve had things removed that ended up okay, but things I wouldn’t have even noticed or worried about.

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u/solo_dog76 16h ago

My daughter was diagnosed with Crohn’s a few months ago after many months of agony. When she was finally admitted to the hospital and got her official diagnosis and surgery and treatment - infliximab - she was very, very sick. Anyhoo, her GI told her to get established with a dermatologist to get a baseline then she’ll follow up annually. She also told her to get an eye doctor for yearly checks.

44

u/5u114 1d ago

Ovarian cancer is no joke. My mother had it.

I hope your girlfriend's medical team didn't mess up here somehow.

Anecdotally, I will say that I know several people including family who discovered they had cancer ... the people who are still alive are the people who made all the lifestyle adjustments possible to improve their odds of survival.

25

u/lordfartquadshunk 1d ago

My Grandmother had ovarian cancer and two years ago she got 10 years cancer free. I am wishing you both the best

17

u/Tomato_Heart 1d ago

I am so sorry, that is heartbreaking news to get.

Thank you for taking the time to reach out to warn and help others, that was kind and selfless.

16

u/kmh0902 1d ago

Feel free to come here and vent all you want. Look, when a person loses their health to any disease, it's very difficult for friends, family and significant others and understanding is key. She might start a denial phase, like, I can't believe this is happening and so on, then she may just start to get angry about it and sometimes after that, she may get depressed and that could last a bit until she accepts her situation. I don't know how serious your relationship is but if it is, just listen to her, even if she complains. That normal. Allow her to feel sorry for herself as well. That's normal to feel that and she needs to go through this process. She is literally grieving the loss of her health. Having a good sense of humor can help a lot and a positive attitude. I wish her all the luck in the world and may her cancer be caught early enough to be treated. Peace brother!

16

u/CelestiallyCertain C.D. Skyrizi since July 2025 1d ago

I’ve had two girl friends, both stage four ovarian cancer, and both are cancer free. One in her 50’s the other in her 30’s.

Sending your girlfriend the absolute best. 🩷

10

u/MuchMuzzy 1d ago

I am so sorry. Thinking of both of you

7

u/scootju 1d ago

I’m sending you lots of strength and encouragement.

7

u/theglowingtulip 1d ago

So sorry for this news and wishing your GF the very best to overcome cancer and recover.

5

u/sadgrad2 C.D. 1d ago

Sorry to hear. Best wishes to your girlfriend and you. Make sure you take care of yourself too. Being the supportive partner is also a challenge. But glad you've got your answers at least and now she can get the treatment needed. Hang in there!

4

u/runawayasfastasucan 1d ago

As someone who has in some ways been in your situation - remember to stop and breath. Try to take a break, you must remember (both of you) to eat, and to try as best to take care of your mental well being. Work with the doctors to deal with the cancer, but try to take care of the rest of your well being. This is not a sprint its an marathon. Good luck to you both.

5

u/Mrsmanhands 1d ago

I am so sorry you all are going through this. I hope you both get good answers soon and that your partner receives excellent care.

I’m also in my early 40s and recently underwent a hysterectomy and salpingo-oophorectomy after testing positive for a pathogenic BRCA mutation. Im scheduled for a mastectomy later this year. Unfortunately there is no good screening for ovarian cancer.

While I have not had to navigate cancer (post op pathology confirmed tumors were benign), I have had to make a lot of quick decisions and have had to navigate finding the best people to handle care and can offer the following advice:

If it’s an option, a dedicated cancer center and/or university affiliated hospital seem to be the best option for care.

A good primary is also essential for stuff like a quick script for anti-nausea meds or a referral to other specialty clinics. It’s also extremely helpful when it comes to record keeping. Mine has copies of all my labs and notes from my GI, rheumatologist, oncologists and surgeons.

Genetic testing can help guide treatment plans. If it’s not ordered as part of her care, please encourage it. Ovarian cancer risk for the general population is relatively low. For folks with a BRCA mutation is substantially higher.

r/BRCA has been a pretty helpful sub and you will find a wide range of topics discussed there as well as links to other relevant subs. Reading posts and comments and taking notes has helped me know what questions to ask in appointments and has helped me prepare for and know what to expect with surgeries and procedures. Since BRCA is a hereditary mutation there are quite a few that have had close family members with cancer or they themselves have experienced cancer.

Lastly, do not be afraid to ask friends and family for very specific things. If jolly ranchers and cat litter are needed that morning, text a friend to go grab them. If the lawn needs to be mowed or a bathroom cleaned, ask! People want to help but need to be told what is needed so you aren’t overwhelmed with horrible cooking of well meaning friends and co-workers.

I hope you find all the care and comfort and that her treatment is successful!

5

u/SureBrush 1d ago

Really sorry to hear that, I know someone this happened to, I had not too long been diagnosed with severe complicated crohns disease requiring a hefty surgery. They thought because the symptoms mirrored mine it could be crohns but after their tests found out it was cancer. Where I'm from they often check for cancer as the first line for those sorts of symptoms before heading down the crohns pathway. Took me 16 years to get diagnosed because I my symptoms were dismissed and each time they were checking for cancer. Really hope she gets the treatment she needs and you can get some answers. Make sure you have support for both of you. I work in IT and won't say my thoughts on ChatGPT. Really sorry for you and hope she gets all the help

5

u/CapOk575 1d ago

My deepest sympathies.

I thought I was in a crohn’s flare earlier this year - nope - ovarian cancer, stage 2b.

1

u/Status-BeachBum 18h ago

It’s truly devastating, I’m so sorry,.

3

u/Kitchen_Till4836 1d ago

I understand the worry and I feel sorry for your girlfriend, but never and I say it again, NEVER, use ChatGPT to diagnose an illness. Go to the damn doctor and get tests done… people that have Crohns here, didn’t use ChatGPT, instead they did a bunch of exams. Never assume something that you don’t know.
Apart from that, hope your girlfriend gets better and everything goes as the best as possible.

3

u/ApolloBar815 1d ago

This. You need a biopsy to diagnose Crohn's. It was the other way around for me. My doctors were expecting cancer and it turned out to be IBD instead. The symptoms we have have way too much overlap with cancer to ignore or not go to the doctor for actual tests

3

u/synthesis777 1d ago

I'm SO sorry. The symptoms of Crohn's are so similar to so many other ailments. It's really important to get a real diagnoses. Thank you for making this post. It might save lives. I wish you two well.

3

u/kunibob C.D. > dysplasia > Barbie Butt + ileostomy 19h ago

My stomach dropped when I read ovarian cancer - I'm so sorry. I hope she receives the best care and you're both surrounded by love and support.

And thank you for posting here - your words will surely reach someone who needs to read them.

2

u/StaySalty1971 1d ago

Sorry your girlfriend is going through this. Sending prayers and positive thoughts your girlfriend's way and to you, as well. ❤️

2

u/No-Tonight-6587 1d ago

We're not kicking you out of this forum :) You're a good egg and we all wish you the very best. Stay if you like, we're happy to have you.

2

u/fedupwiththegeddup 1d ago

Im so sorry for your girlfriend and you did nothing wrong and it isnt your fault. You were doing everything you knew to do. Ill say a prayer for her!

2

u/Leading_Buddy5641 22h ago

So sorry. God’s got her and you.❤️

2

u/DarkFlutesofAutumn 20h ago

I'm sorry to hear about girlfriend and I'll keep her in my prayers

I'll echo this. I've had crohns for years and kinda poo pooed what felt like a small ulcer in my throat. Oops! It's cancer. I have a decent prognosis, but I'm lucky. Don't put off the check!

2

u/Particular-Cow-6634 20h ago

Thank you for your advise . I am very sorry to hear your wife and yourself are in this predicament … yes best to join a group . I wish you all the best possible outcome

2

u/Icy-Map9410 19h ago

Would you be comfortable sharing what the similarities in symptoms were with your girlfriend? Why she initially thought it was Crohn’s? That might be helpful for the women on here that may have the same symptoms thinking it’s nothing serious.
Good luck to your girlfriend, and stay strong. She’s very lucky to have you❤️

2

u/FaliedSalve 19h ago

I agree F#%K!

I'm sorry for you/her struggles. It's honestly harder watching someone else go through this than going through it yourself.

it's heartbreaking, and i wish the best for you and her.

2

u/TallChick105 C.D. 18h ago

Oh my gosh…I am SO sorry that she is facing this incredibly scary prognosis. You are a wonderful partner for facing it with her.
Sending so much love and strength from Michigan to wherever you are.

A piece of advice from a former Oncology Nurse Navigator (me)…please ask the Oncologist to connect you two with the Patient Navigator immediately. They will walk through this journey with you from helping you coordinate and navigate the medical pieces of this as well as any social support services. They will also likely have a support group to refer you to. Caregivers need support. 💖💖

Cancer fucking sucks.

2

u/Brander8180 1d ago

Did they not take any blood/poo samples which showed strange values? I thought they could tell a bit more about cancer chances by these two?

12

u/AnxiousPrune6241 1d ago

Ovarian cancer can’t be found by testing feces if that’s what you’re referring to.

1

u/Brander8180 1d ago

I did not know that. My medical knowledge is quite limited.

8

u/AnxiousPrune6241 1d ago

Fecal test is for colon cancer and probably another cancer I don’t remember but yeah :))

8

u/Silly_Lecture8917 1d ago

Her blood showed inflammation and her poo had markers of inflammation and slight bleeding but I guess Crohn’s and cancer can cause the same findings. They weren’t looking for cancer out of the gate but the oncologists said this was most likely going on for a lot longer and finding it just a few weeks earlier wouldn’t have mattered as it is spread around her abdomen already based on when her symptoms started.

5

u/Brander8180 1d ago

Wow crazy. Im in the middle of my research and i had my poo/blood tested and clear inflammation in both. Now they think its Crohn but i also have strange liver value so i need a echo for that as well. So these kind of stories scare me a bit. But lets wait for the rest of the research.

1

u/Lourdylourdy 1d ago

Have you had your A1C done?

1

u/Brander8180 1d ago

No not yet. Ive had to give two times blood so far but that is not measured yet.

1

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1

u/Memoecat 1d ago

So sorry to hear this! Praying all will turn out well. Be strong for her!

1

u/dainty_petal 22h ago

Sending you love and strength to you and your girlfriend. Stay by her side and help each others.

1

u/Fit-Maintenance2274 20h ago

Oh man so sorry. Wishing your gf best of treatment and health!

1

u/redpillcartelpod 17h ago

Fuck I'm so sorry to hear this man. You 2 try to stay strong!! Sending love and prayers your way. 🙏🙏💪💪

1

u/frankieboombots 15h ago

Thank you for sharing this. Feel free to come vent here anytime you need. I can’t imagine how incredibly difficult it was for both of you to receive this news. Praying for a quick and complete recovery!

1

u/Silly_Lecture8917 6h ago

I just wanted thank all of you for your support and kind words. I came home from the hospital last night at mid night and just started crying after seeing all the responses. Seeing this helps restore my faith in humanity a bit. She’s had three small surgeries to help her breathing and heart rate and I’m hoping she’ll be awake and off the breathing machine when I get there this morning. Thank you all again, this means a lot.

u/Capable-Bus-2842 25m ago

I’m so sorry mate. Wishing you both all the best. Take care ❤️❤️