Crohn’s & PSC: Questions about medication and natural treatments

Hi @sandyjr, I moved your question about taking cod liver oil when you have Crohn's and PSC (primary sclerosing cholangitis) to this discussion that you previously started about taking supplements. I did this so you can continue to connect with @lisag03 @dval @guener @meggie1135 @eden @theysayimcrazy and others. I'd also like to bring in @rosemarya @svezir @rodney9999 who have experience with primary sclerosing cholangitis.

Sandy, may I ask why you are interested in cod liver oil for your daughter? What are you hoping it will do?

Hi Sandy. There has been some research to see if cod liver oil would alleviate inflammation and suppress flare-ups. No improvement was found. But, also, no adverse reactions occurred in the subjects. Cod liver oil does, however lubricate the tract and may assist the passage of faecal matter through the intestines. It may also contribute vitamins d and a, and beneficial fatty acids. In all cases of dietary changes you must consult your health professionals. And periodically search the internet for future research results on dietary control of IBD. Good luck.

My daughter has Crohn’s and early stage of PSC. She cannot seem to get the Crohn’s under control and is on several medications. She started Stolara last month. She had previously used Entyvio and Humara and they did not work. The Stolara does not seem to be working. She had surgery for the Crohn’s in August of 2019 (removal of 8” of her intestine) and had her gall bladder removed in March 2020. Now she is experiencing very pale poop. She has an appointment with her gastroenterologist on Feb 8. I am really upset and scared.

Hi @sandyjr, After being in remission for 20 years and now having all of these flareups and surgeries, I am sure both of you are feeling upset and scared. You will notice that I moved your new posting to your ongoing discussion about your daughter's Crohn's. I did this so that the people you shared with will not only get an update, but your entire conversation will move to the top of the list in the group so new members can follow what's been going on as well.

You may be interested in this Post by Colleen, our community director, on stool color with links
- https://connect.mayoclinic.org/discussion/clay-colored-stool-and-change-in-diet/?pg=1#comment-436905

Sandy, has your daughter ever had any problems with her liver before? You mentioned her bloodwork being all over the place. Did they ever test her liver function?

Hello, I was diagnosed with Crohn's disease 3 years ago and since then I have been taking Humira to manage symptoms (currently 1 injection/week).
After recent colonoscopy (end of March) I was told to undergo ileocolic resection surgery in 3-6 months as there is a stricture formation in ascending colon and IC valve is also strictured & ulcerated. Stricture in ascending colon has worse since colonoscopy in Nov 2019. Based on stricture location in ascending colon surgeon may perform Hemicolectomy.
Currently I have no symptoms or abdominal pain except occasional flare which is common in Crohn’s. I am not sure if I need a surgery or alternate medication can fix stricture and ulceration. Please help or share your experience if you had similar surgery. Thanks You!

Hi @awanay and welcome to Mayo Clinic Connect. I wanted to introduce you to @sandyjr who's daughter is experiencing something similar. You will see that I moved your post to the discussion that is talking about the same subject. I did this so you can connect with the members who can share their personal experience with Crohn's.
Do you know if there is a medication that can help with ulcerations?

My cousin has Crohn’s disease and suffers with really bad morning pain and pain throughout the day, she has been on Stelara but i don’t think it’s doing anything. Her pain is unbearable in the mornings, anyone else suffer from bad mornings and have any tips?;( my heart breaks

@xoxoxo101, Welcome to Connect. You are so kind and caring to inquire about your cousin. I imagine it is very upsetting for you to be witness to her pain in the mornings. I don't have any experience with Crohn's so I have no tips to offer to you. However I do have a link to information about Crohn's Disease from the Mayo Clinic Patient Care & Health Information> Diseases & Conditions.
https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
I hope that by sending this information, you can read it and talk to her about what she is experiencing, and whether she might want to discuss in more detail with her doctor. How does that sound? Do you see her often or live near her?

I would really love to connect with others that have Chrohn's and PSC. I have been successfully managing my Chrohn's for the most part with Stellara but I just received the diagnosis of PSC. So, I'm just starting this journey and from what I have read about it is very scary. I would really like to see how others are managing and coping. Thank you!

Hi @lstubert, welcome. I wanted to honor your request for connecting with other people, so I moved your post to Crohn’s & PSC: Questions about medication and natural treatments: https://connect.mayoclinic.org/discussion/does-everyone-being-treated-for-crohns-take-a-ton-of-medicine/

Here is another discussion you might like to read about the same topic. Has anyone done intermittent fasting for PSC/Crohn’s/Diabetes?: https://connect.mayoclinic.org/discussion/has-anyone-done-intermittent-fasting-for-psccrohnsdiabetes/

Are you currently having symptoms from the PSC?