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Hi guys. I would appreciate any help I can get right now.

Me and my boyfriend have been together a year, he is 23 and was previously so fit, active and happy. He often had tummy pain but we just laughed it off most of the time. Suddenly in June he got so ill, was passing so much blood and throwing up. He was admitted to hospital and was in 3 weeks, losing 2 stone. He is out of hospital now and is anaemic and still is struggling with eating, going to the toilet and fatigue. It's been 4 months since the start of his first flare up; is this normal that he is still so poorly now? He is so down at the moment and as he is seeing not much improvement he is so negative about the future. Has anyone else had a flare up like this? I can't be sure of his medication but I know he has enemas morning and night and small sachets of something which looks like salt. 
Any help at all would be so appreciated. I just wish I could make him feel better!

Thank you so much!

Reply posted for glamol.

So sorry to hear about your boyfriends struggles. I know he is lucky to have you by his side. Sadly I hear these stories all the time. 

I would keep in regular communication with his healthcare team. If he is staying ill they need to be helping him try different treatment options. Hopefully one works well soon. 

Suggest maybe he can connect with other warriors on instagram or facebook to feel less alone in this fight. I find that helpful. I am on IG sharing my journey @betterbelliesbymolly

In terms of food it really varies from person to person. There are a ton of different diets out there to try. Here are the names of a few: AIP, Paleo, SCD, Low FODMAP, Vegan, Keto. I don't adhere to any of these but might be worth a shot. He could also just try cutting out gluten and see how he feels or just cutting dairy and seeing how he feels. This entire disease has been trial and error so that is the hard part. Don't give up. 

Reply posted for glamol.

Trigger foods can be different for everyone. Lactose and gluten are good options, I find sugar sets me off. For others it can be raw fruits and vegtables. Good luck!

Reply posted for Sharon66.

Thanks for all your replies guys.

He has tried infliximab but this did not work so now he is on Humira which seems to be helping so much! Would you suggest anything to cut out his diet? We are trying one thing a week like lactose, gluten etc. I am trying to be really patient, it's so awful seeing someone you care about suffer like this.

Thanks again!

Reply posted for glamol.

Although I don't like using them, the only thing that gets a bad flare up sorted out for me is a high dose of steroids, gradually decreasing over the weeks.  I try my best not to use them but sometimes they are needed.  Be really patient with you BF, there will be days when you get all ready to leave the house then he won't be able to go.  My husband has been so patient with me, sometimes I feel so sorry for him as it effects his life too.

Reply posted for glamol.

Although I don't like using them, the only thing that gets a bad flare up sorted out for me is a high dose of steroids, gradually decreasing over the weeks.  I try my best not to use them but sometimes they are needed.  Be really patient with you BF, there will be days when you get all ready to leave the house then he won't be able to go.  My husband has been so patient with me, sometimes I feel so sorry for him as it effects his life too.

Reply posted for glamol.

I went thru that.  You may need blood transfusions. I’d also look into biologics like remicade or entyvio

Reply posted for glamol.

I went thru that.  You may need blood transfusions. I’d also look into biologics like remicade or entyvio

Reply posted for glamol.

Hi!

I am sorry your boyfriend is not feeling well. I was diagnosed when I was 14 years old and it took me 6 months to reach remission for the first time. It can take awhile to find a medication and life style that works for you. If you are not satisfied with how he is doing, encourage him to reach out to his doctor to see if there is anything else he can try. I started the SCD diet in addition to my medications and this helped me better control my symptoms while I waited for medications to kick in and my gut to heal. It can be different for everyone so I would just suggest having a conversation with his doctor about all the options. I am 20 now and even though it does not seem like it, he will be able to go back to being active and living life however he wants soon. Good luck!

Reply posted for glamol.

Hi! I'm 16 and currently dealing with ulcerative colitis. I've had UC since i was in 7th grade and was in the exact position as your boyfriend and will tell you it really easy to take in in the beginning. I was a really athletic student but was suddenly told i could now only do "light exercises", which made me so negative about everything. Now im better, not like before, but still able. I can do extreme sports and exercise in order to challenge myself. I think im actually better now as a person, a bold strong-headed young girl. I don't care about others irrelevant thoughts about me because this made me a better me. Instead, i keep those who love me for who i am close. I hope you show him he's no different of a person even with this disease and become one of the people he always keeps close to his heart. Xx Wow this got abit emoshhh 😂😂 Wish you both all the best xx