Post # 1
She was diagnosed with Crohn’s Disease about 10 years ago. She is in the ER or hospital A LOT. Right now, her kidneys are infected and she’s septic. She’s had multiple surgeries on her intestines. Multiple hernias and hernia surgeries.
Seems like she’s in the ER for low blood pressure, extreme pain, etc every month. Is Crohns hard to manage? Maybe she has a difficult case? At this point I have to wonder how well she is taking care of herself.
Post # 3
I have Crohn’s. It can be hard to manage even when you do everything “right.” After my initial diagnosis, I had 2 horrible flares even while taking my meds and following the diet. It took about 4 years before it calmed down. I’ve also been in and out of the ER for additional complications, Chronic pain being one of them
please just be supportive of your friend and unless you have super solid proof she is not taking care of herself, don’t question her choices. It is hard enough being sick let alone dealing with judgement from those who are supposed to care for you.
ETA:depending on what kinds of medications she is taking, she can be much more susceptible to infections and they can be life threatening to her because of a compromised immune system.
Post # 4
@louanneandmike: I am a nurse on a post-OP surgical and GI floor. Crohn’s is awful! Flare-ups can lead to sepsis, fistulas, internal bleeding, may require multiple surgeries and even in some cases the creation of an ostomy.
Post # 5
I don’t have it myself but two people in my family do. I know that they do all the “right” things that are supposed to help control it, but they still end up in the ER. One ends up in the ER more than the other and with worse problems so it may just depend on the person. From what I’ve seen it looks pretty difficult to manage.
Post # 6
FH has Crohns.. He is *basically* in remission thanks to Remicade.. But when he flares, it’s horrible.. He can’t move, he panics, and he’s just all around in bad shape.. He has never had a resection, but they have threatened several times now… Crohns can come and go.. He went 2 years.. not eating right, not taking ‘proper’ care of himself (he is extremely healthy, health wise, except the crohns and bad vision, he’s also very fit), but he always kept up with his meds, but he did have small managable flares… He deals with pain very poorly, so when he hurts, it’s bad.. As far as not being sure if your friend is caring for herself, that’s her boat.. The best thing you can do is support her, be there for her, and when she hurts (I know this sounds nuts), remind her to breathe.. FH forgets to breathe, and it makes things worse…
Post # 7
@louanneandmike: At this point I have to wonder how well she is taking care of herself.
You definitely need to educate yourself about it, because to be honest that is a REALLY offensive thing to say about someone with Crohn’s. There is no cure, and a person can be doing everything right diet-wise and have it make not one bit of a difference. My cousin was being absolutely perfect with his diet and still almost died from having it. Thank goodness he finally got into a trial for some new medicine that has worked wonders for him. He still has bad days, but before he practically lived in the hospital and withered away to almost nothing.
Post # 8
I’m glad to see people are not jumping on me for being a little harsh on the OP.
i had a hell of a time at first and a disease like Crohn’s can involve a ton of trial and error as far as treatments go. I tried all the different biologics on the market. By the timei got to my current one, it was the last one before getting into a clinical trial. Super scary to be told “well, we’ve tried everything and nothing has helped. Go try experimental treatments.”
OP, please do more research. Ask your friend what you can do to help her. Listen to her if she needs a shoulder to cry on. Having a chronic illness like that can often lead to social isolation and depression…I know first hand. I’ve been living with it for a long time.
Post # 9
“at this point” you don’t have the right to wonder! Your business is to be there for her though something you’ll never understand because you don’t have it yourself.
Post # 10
Even less intense intenstinal conditions can be near-impossible to manage. I don’t have Crohn’s but I’ve read about it. Some people’s triggers are things like stress, or almost any food at all, or getting a cold, or the seasons changing, or just waking up in the morning. Flare ups can be insane and crippling and come nearly without warning, and learning how to “take care of yourself” is a miserable trial-and-error process because every case is different, and even once you figure it out, sometimes it just changes on you!
And even when you get it perfect, which is like getting it perfect playing flight of the bumblebee on a mis-tuned piano hanging upside-down in the dark, it can STILL flare up and bite you for no reason.
Please believe your friend is doing everything she can.
Post # 11
Guys, I am educating myself. The standard stuff on Mayo Clinic and WebMD only go so far. It is helpful to hear first hand accounts of what it’s like.
So if she were a diabetic who ate ice cream throughout the day, I can’t be judgemental?
Post # 12
@louanneandmike: So if she were a diabetic who ate ice cream throughout the day, I can’t be judgemental?
While that situation would still not really make her diet any of your business, and I don’t understand how you seem to want to judge her, diabetes is a COMPLETELY different illness from Crohns. Keeping diabetes under control is a fairly standard procedure off taking medication and limiting your sugar intake. Crohns, as many people have told you but you have ignored, can be triggered by just about anything – many of which have nothing to do with diet or lifestyle. It can be almost impossible to predict what will cause a flare-up. And it’s not hard to find first hand accounts of what it’s like…google is helpful. Your friend is going through hell, and you seem to be looking for a reason to blame it on her. I don’t get it.
Post # 13
@louanneandmike: The best way to learn would be to ask your friend provided she’s willing to talk about it. If she senses you’re judging her choices, she may be more reticent to talk. Honestly though, every person has a different experience so it is almost impossible to make generalizations.
Based on my experiences and what little you posted about her, a person would have a hard time staying alive for 10 years with severe Crohn’s and not taking care of herself. I’m not trying to be dramatic. It’s very easy to get malnourished and have complications.
Post # 14
@louanneandmike: I have it and luckily was diagnosis extremely early at age 19, I’m currently 24, in the development. I have only had one flare up but each day is a challenge. I definitely have to stick to my routine, monitor and plan every aspect of my life. I dont get to be spontaneous but the good days are amzing but the bad days just make me want to cry. I have an uncle that had it but died from complications with crohns. My family still doesnt understand it and its a process in understanding. My FI is supportive and my doctors all have been great with my many appointments. Each person has different triggers and reliefs. I am on minimal medication as I am studying in the medical field so I have to leave my immune system at full capacity. i am also a lucky one that I can manage most symptoms with daily exercise, extreme diet changes, everything home cooked and sometimes all juice diets. and a proper sleep schedule. Each is different and I know others that can barely control any aspect of the disease. The best you can do is being understanding, supportive and be aware of her possible triggers to help make everything more normal for her
Post # 15
My mom has Crohn’s disease and currently has it SOMEWHAT under control with Remicade infusions every month. Crohn’s is an awful disease, I’m a nurse so I see it in the hospital and first hand with my mom. It is an autoimmune disease that pretty much has to be controlled with medication, diet can help a little sometimes, but flares can happen at any time for any reason. It is an extremely painful (and can be embarrassing at times as well with constant trips to the bathroom, etc) disease to deal with and unfortunately, there is no cure. It can cause all kinds of other problems as well, some patients even need to get an ostomy. There is no reason that you should be judgemental with a person with Crohn’s disease.
Post # 16
I was diagonsed with Crohn’s when I was 9 (youngest case in the province at the time), so I have a lot of experience with it. 🙂 Crohn’s disease varies greatly from person to person, and symptoms and severity can change over time. What works for one person will not necessarily work for another. For example, I have tried all of the diets and they did nothing for me (I have one of the top specialists as my doctor and he confirmed this), but others have reported that they help. I can also eat many of the foods that are triggers for others and have no problem with them. I eat a fairly healthy diet and exercise but I still get flare ups. My main trigger is stress. Before remicade (which lowers your immune system and makes infections a real risk), nothing really worked for me. Even with the remicade I occasionally end up in the hospital.
Crohn’s disease can be confusing to someone who does not have a crohnic illness, especially since there is a lot of conflicting information on it, so I don’t blame you for wanting to understand. There are plenty of people who claim that diet, herbs, whatever, can control or cure it. Even if some of them do work, they probably work for only a small minority of Crohn’s patients. It is a serious, chronic disease which actually damages your intenstines (or whatever area it has impacted, even this can differ from person to person) and it and the medications can trigger a variety of other nasty symptoms.
Personally, I don’t mind if people ask me for information about it. It might be worthwhile to ask your friend if she would be willing to talk about it to help you understand. Most people with chronic diseases realize that others without them are not likely to understand and are often willing to talk about it.