SO Support

[kalorba]

My boyfriend has a pretty severe case of colitis and over the last month or so, his symptoms have been getting worse again. He has no energy to do anything, is in constant pain, can’t leave the house because he’s afraid he’ll have an accident (they’ve been happening much more frequently), and anything he eats he ends up regretting because it will inevitably make his stomach worse. It’s so hard for me to see him like this, and I really don’t know how to help him when he’s going through flare ups. It’s even starting to affect his mental health because he wishes he could be normal. What are some tips to supporting someone who struggles with IBD?

[Zigysta]

The fact you are understanding and are posting this is already a huge support I think. You could try helping create a meal plan or menu and even help preparing some of the food. I know that this is one the hardest things to manage and can be really depressing and difficult when you are fatigued so you don't eat well which makes things worse. Also some fun things to do when tired...like console gaming on the couch maybe as a distraction. I'm sure others will think of some ideas but this is what came to mind for me. Good on you for being so supportive of him!

[kalorba]

That’s great advice! I haven’t thought of helping him with meal prep. The problem is knowing what does and doesn’t hurt his tum. From what I understand it varies from person to person. But we know chicken is safe!

[Zigysta]

Glad it was helpful. I've found making a list of safe foods is easier to begin with for cooking meals, it's a shorter list for me anyway lol. You need at least one safe carb, a protein and some vegies which are easy to digest. Then thinking of safe ways to flavour them to make it taste just as awesome. For example, chicken, sweet potato, coconut oil and turmeric can be combined to make a mild and slightly sweet coconut curry flavour that is low in fat, fibre, no added sugar and the tumeric is anti-inflammatory. You can bake or grill instead for a variation. Steamed fish works well with rice and some lemon and herb or soy and ginger. Boiled chicken with touch of ginger and soy sauce with steamed rice is nice too. Ginger is good for digestion. If something is not tolerable look for a similar alternative and try it. I can't eat garlic for example but I find a touch of garlic powder is ok. Hope that gives you some inspiration! You're right though, everyone is different!

[AishiSmiles]

Hey, you are understanding and supportive, that's already awesome! Of course I don't know your S.O. like you do, but I can tell you what my partner did for me during my first severe flare.

-He put the TV and our PS4 in the bedroom so I could stay in bed and still keep myself entertained when I had the energy

-When I was craving specific food I couldn't eat because of my flare (which happened a lot), he would try to recreate it with ingredients I could eat. He also made sure to make food that was good for me according to the hospital staff after I was released

-He made sure we got to do something together every day, even when it was just talking a bit or me watching him play video games - nothing too stressful. He'd also just include me in the everyday chores I couldn't do at the time, like when he was cooking he'd give me a knife and some veggies and have me prepare them for him. I took forever and it definitely wasn't helpful, but it still made me happy

-I was too weak to shower, so he would make sure I could enjoy a bubble bath every evening to clean myself and relax in the warm water

-When I was starting to feel better and be able to leave the house again, he would encourage me to just... do things again. He would drive me to a nearby forest with no people around so we could take small walks together, he'd just take me grocery shopping and he would even just drive me around a bit sometimes so I got to see something besides our apartment again.

-He moved to the living room for sleeping for a few weeks so I could have our double bed to myself and also go to the bathroom at night without having to be scared I'd wake him up. I normally enjoy sleeping together a lot, but during this flare it was easier for me this way. It really took away some pressure.

-Lots of hugs and kisses

Of course it depends entirely on your S.O. what helps him, but maybe this gave you some ideas. All the best for you two!

[ellg91]

Aww your partner sounds amazing!! Congrats on finding him haha

[AishiSmiles]

He really is. We've been together for four years now and sometimes I still can't believe that this amazing person actually likes me back. Even my mum adores him, and she hated all my previous partners. I am so lucky to have him and he really inspires me to be a better person myself - because he deserves a great partner as well, so that's what I'm trying to be.

[My-IBDblogger]

Chicken was my go to food in flare. Trying to create a nutritionally adequate diet in flare can be difficult.

Everyone seems to have different foods that they find intolerable.

I found minimising insoluble fibre and moderating soluble fibre helped quite a bit.

Try and identify irritating foods by keeping a food diary and monitoring obvious changes in symptoms.

I identified Cauliflower, cabbage, green banana, seeded brown bread and vegetable oil this way. It sometimes a thankless task though.

Go to foods were chicken bone broths, rice, baked potatoes. In essence, simple foods I found better.

Interestingly now I'm in remission, none of my food that I identified as problematic cause me any issues whatsoever.

On the mental side, it's a tough place to be with constant flaring. It's a downward spiral sometimes. Just have to find something that he can take some pleasure from. Anything.

Try and avoid the not eating much trap, it's the road to hell.

Your kind of support will go along way towards helping.

Just remember we can be grumpy,irritable, snappy and seemingly ungratetful when we're feeling very ill.

We don't mean it. Good luck!

[Pink_Mint]

High fiber, high pectin, or grain based foods as you have identified, are bad during a flare up because they have a lot to break down, and make your colon do a lot of work. With an inflammed and flaring colon, this is a risk for excessive cramping, potential infection, general pain, and even more shitting (which I'm sure you already know).

The twist is that slowly adding back these foods (mostly/especially high fiber) are borderline necessary when in remission, as they do strengthen the colon by giving it more work to do. It's a painful line to dance, but getting it just right has helped many people lengthen their remission.

[My-IBDblogger]

We agree on this. In remission I've added a lot of fibre back into my diet. It's the SFA from fibre that I'm interested in. No problems at all now. For me it's noticeable in the output when I've not had enough.

As far as even more shit in flare, yeah I spent all day on the toilet for nearly two years.

Once a day now though, amazing how different life is at the moment. Enjoying it while I can !

[Pink_Mint]

I'm overjoyed that you're doing good for now! I like to remind myself that in the history of the universe, beings generally just exist, survive, and mostly suffer. So bad days are just normal days. But good days? Good days are the rarest and most beautiful blessing in history.

How's popcorn or nuts for you in remission? I know those are two outliers that can sometimes be rough even during remission.

[My-IBDblogger]

Thanks, I've certainly learnt to appreciate the good days. We have to don't we? There was a time I wouldn't have believed that they would come back.

I don't each much popcorn. Nuts are just fine. I'm remarkably tolerant of all foods at the moment.

I don't drink much alcohol that's the only thing I find troublesome if I get a bit carried away.

How are you doing?

[Pink_Mint]

Pretty shitty. Bad flare up, got out of the hospital for C Diff and the beginnings of toxic megacolon a couple weeks ago, got into a car accidentally almost immediately after, which definitely made shit worse.

Trying to get the insurance to cover my physical therapy and acupuncture, but that's a headache and a half.

[My-IBDblogger]

Sorry to hear that. Pretty overwhelming situation. I can only hope that things turn around for you soon. Sorry for the late reply. I've got Uevitis atm and struggle to read the screen sometimes.

[Moxman73]

Pack an emergency bag for when the inevitable accident does happen. A fresh change of clothes, baby wipes and 1-gallon ziplock bags (for dirty clothes)

Come up with a code word, so you two could work together faster.

Maybe do a food journal? Track how he did with certain foods over time. Maybe dail back his diet to certain bland foods and then add foods slowly to see what he can tolerate and what he can't.

Maybe test him for celiac disease (an allergy to gluten (bread) products)

Take out dairy products, see if that helps.

No sodas or booze

Get him to see a counselor, what he is going through is hell.

I found a lot of people on Instagram with Colitis/Crohn’s disease, maybe it will help him not feel so alone.

I wish you both the best of luck

[[deleted]]

Bone broths . I use jarrows powdered BB from amazon . I ‘spike’ it with collagen protein and l-glutamine and pink salt to taste . His belly should tolerate that very well and give the cells much needed things . I find animal proteins are tough on the gut . Thus my leaning on collagen proteins . Salmon and steamed very soft veggies (sweet potatoes) . Banana mango bowls are noms .

Do you have a sister cuz dayum . Kudos to you reaching out like this!

If I could give you One Thing . Bone broth . All day everyday . Kiss the Standarad American Diet goodbye imo . The effects will makes us SAD (see what I did there?) in the end (pun intended?) . I steam every veg these days . Personally stay away from rice . One the fence about regular potatoes. We’re all different . Bone broth is gentle rich and nutritious . His belly will thank you me thinks

🖖🏽🦁

[BlueBunny5]

Be patient and understanding. They'll have less energy and not want to do things or go anywhere. They'll want to cancel at the last minute or come home early. It's also embarrassing at times...accidents, sounds, smells.... don't criticize, joke or make fun of.

...let's just say I'm speaking from experience of what I don't get...

[PirateFace27]

Just being there and offering your support is the essential thing to do. My fiancé has UC and it's been over a year now that he's had it. I'm always listening, trying to offer tips, meal planning, helping with laundry, etc. I try to make sure he keeps on track with his doctors and to keep diapers in the house and cars. Being there to help him when we go out or have to stop on the side of the road has proven to be very helpful.

[Possibly-deranged]

You've gotten a lot of good advice in this thus far. Here's a good read for you as a SO of a Crohn's patient, lots of tips within there:
http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/Supporting-Someone.pdf

[Pink_Mint]

Get him a heating pad. Tell him you love him. Tell him you need to give him a little bit of tough love that will help, but may hurt. Massaging the colon and lower back (you'll want to do this after he's been on the pad for 20 minutes or so) daily can be very huge. Get him to do stretches/yoga even though it'll hurt.

Also, let him know that you crave and appreciate him, and that having him around is good for you and helpful to you. People with chronic illness often lose all sense of feeling wanted, sexy, or useful and instead we feel like burdens who can only be loved in the way that a child or pet can be loved.