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Unmet needs of ulcertive colitis patients to be a better caregiver/support system

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Posted 6/18/2018 1:07 PM (GMT -5)
I want to be a better friend to my friend who was newly diagnosed with UC. What are some of the unmet needs that UC patients experience. What is needed by patients and what are the biggest struggles everyday. How can I help improve the life of my friend. How do you navigate the medication decision.
Posted 6/18/2018 1:40 PM (GMT -5)
You sound like a wonderful friend. How nice and thoughtful of you to join the forum and ask this. Your friend is lucky to have someone like you in his or her life.

For me, when I am in a severe flare, what would help me is to have someone offer to help me out at times with things like driving me to a scope or to the ER/hospital or even doctor appointments if I am in a lot of pain or very sick. You might also offer to buy your friend groceries or come over and help him or her clean their house a bit or pick up a prescription for them (if the pharmacy will allow it). Just having someone to talk to and listen is very helpful as well. If your friend is ever in the hospital, it is nice to have visitors. It really helps to know someone is out there rooting for you and thinking about you.
Posted 6/19/2018 4:28 AM (GMT -5)
I would say it is the same as helping anyone when they are sick. Try to help them with household chores, cooking them meals that they can tolerate etc. When I was first diagnosed, I would get annoyed that many of my family members would constantly ask me how I was feeling. I didn't want to be thought of as a sick person. Over time, I have learned to appreciate that they are concerned about my health. You are a good friend to care. Just recognize the disease comes and goes so when your friend is in remission they probably will want to just live their life and not think about UC at all.

Honestly, you should just ask your friend how you can support him/her. They would know better than us. As far as medication decisions, I would leave that up to your friend and their doctor. If you want to do research for them, I would definitely ask if they want your help before offering any type of advice. Do not judge or lecture them.
Posted 6/19/2018 6:51 AM (GMT -5)
You seem like a good friend. Be there for them and don't bring over a huge pizza or milkshake as a treat
Posted 6/19/2018 8:34 AM (GMT -5)
It's great that you want to support your friend. If they were recently diagnosed, I'm guessing that they are flaring and are/will be starting medication soon. I hope the treatment helps and they feel better soon. But it's important to remember that this is a chronic condition that affects everyone differently. Some people go into remission for years and others may not. For some, diets can help/"cure" their condition, for others diets have no impact. It's great to do research about this disease, but like others have said, be careful of offering advice. It can be very frustrating for well meaning friends and family to tell me what I should or shouldn't eat or how I should be feeling. (My parents are frustrated for me that I have not achieved a deep remission because my brother is one of the rare cases that his remission is so deep he is off all meds).

The one advice that I think is almost always safe is to encourage your friend to have open and honest communication with their doctor. It can take some time to build a relationship with your doc, but if they do not feel their doc is listening to them, it's okay to look for a new one.

Finally, just try to support them the best you can. As you'll see, this disease can be unpredictable. At some point they will cancel on you last minute. Just try to be understanding and supportive.
Posted 6/19/2018 9:11 AM (GMT -5)
You're such a sweet friend.

I'd bring him/her a hot water bottle or heat-retaining pad, warm it up, and ask them to put it on their lower abdomen for temporary relief from aches and pains. Those are wonderful when we're sore.

When we flare food goes right through us and makes us feel awful in general (the more input of food volume the more output of pain/misery in the bathroom), so although it's a nice thought to bring over food it might not be well received. What we tolerate well during flares is simple, non-spiced, well-cooked, low fiber foods: broths, soups, chicken and potatoes are all good examples. Often we limit what we eat to just a few "flare safe foods," or fast while flaring for some relief (as eating is the very last priority for us).

Our biggest concern is being near a bathroom, so your friend would much rather stay close to his/her bathroom and not worry about urgency and accidents. UC can give us insane bathroom urgency, like a minute or less to go in the toilet or our pants (mornings are hell for us, later in the day is generally better). So, best to just watch a movie, play cards, or hangout at his/her place rather than go out (scary for us during flares). Flares are temporary and we will heal, it just takes time to return to normal.

The best you can do is listen, try and understand, and be there to make your friend feel better. As often we feel alone and that nobody gets/understands us. It's an invisible-illness, and we look 100% normal from the outside meaning many think we're complainers, exaggerators, etc. On the inside we're unwell, and unless you're in the bathroom then you have no idea of how awful UC can make us feel, pain from pooping, panic/anxiety over urgency, etc.

Hopefully this helps you "get inside our heads" a little and maybe help/encourage your friend. There's no instant-gratification on healing from a flare. It might take weeks, a month, multiple months, or more. Just keep after his/her doctor to keep trying new things if at first it does not succeed...

Good luck, I hope he/she feels better soon!
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