A student with IBS
Hi, I know it's a long text but I would appreciate anyone's point of view or experience💕
I'm Rose a high school student. I've been having trouble with my health since middle school and it's really been getting worse these past year - especially the past two months.
I have this thing called IBS (irritable bowel syndrome) but I also struggle with migraines.
IBS is a common digestive disorder characterized by abdominal pain, bloating, and changes in bowel movements. Its exact cause is unknown, but it is believed to be related to gut-brain axis dysfunction, stress, and food intolerances. It can be managed through lifestyle changes and medications, but currently has no cure.
I've been "diagnosed" with IBS in 2021. My type of IBS causes me to have pretty bad chronic pain and to feel nauseous. Throughout my battle with this disease I have good weeks, but also bad weeks. I've been doing the fodmap diet which helped make my life quite normal again, but this year has just been ***. I don't even know what to do anymore.
I know two and a half years of this thing doesn't sound that bad, but hear me out. When I need to test new foods to add to my diet it might turn out to be a "bad" and cause me abdominal pain, bloating and nausea. From then on it depends. I might not be able to get back on track with life for a week because the "bad" food I ate causes me to have flare ups (after I eat) of pain and bloating even if I would eat the food that doesn't cause me abdominal pain. But maybe I will be totally fine (that doesn't happen much though😔).
To get back to my story. I've been having the bad weeks for about two moths now I think. I've missed probably one month or more of school on and off. This caused a lot of problems with my family.
To give you more inside; One time me and my mom went to one of the doctors to help with my IBS and he got an idea that my mom really loved. The idea was that I should try and push trough the pain and everything will be back to normal. But from my experience it's pretty hard to push through and ignore chronic pain.
Back to the story. Well my mom just wants me to push trough the pain and move on. But it hurts so damn much and I'm not that strong to be able to ignore it anymore - it's been really bad these past few months. When a school morning comes I'm exhausted from the night, because I've been in pain most of the night without getting enough sleep, and I just don't have the energy to go to school. When she comes into my room to wake me up and hears me telling her I can't go to school she gets super angry and stressed. She knows every day more I spend at home the more trouble and stress I'll have trying to get back on track with school work (I'm an A student for contexts). Mornings like that we end up yelling at each other and just *** about one another.
Long story short my father usually interferes and supports me staying at home which causes them to fight too. I feel so bad for being the reason for that. And because the past few month have been so awful their fight escalated too. Just this Monday my mother came back to my room, after I told her I won't be going to school that day, and she was sobbing, frustrated, angry (basically any emotion you can think of) and started to yell, cry and question me why am I doing that to myself, to them, if and I quote "want them to get divorced" because I seem to not be wanting to get better by lying in bed all day feeling sorry for myself.
I don't know what to do anymore. I've been trying for so long to get back up every time IBS causes me to fall, but I just don't have the energy to get back up and try again, because there's no cure to it. It never stops man! I've been to soooo many doctors in the past few years and they tell me I'll need to figure it out myself. Jesus man I'm not even 16yo yet, but I'm suppose to do it alone? How can you expect me to do that?!
Please I'm begging, has anyone had a similar experience with IBS, family, health...? Please I need help I have nobody. I feel so alone in this 😔
@MildJo
I'm so sorry to see that you're not only struggling with IBS, but having difficulty with your family.
I can definitely relate to the digestive system troubles as I have a couple of issues myself and the pain and symptoms can be really problematic. What medicines are you taking to manage your symptoms? If you're not taking any, I really hope you're able to get some help from your doctor. There is medicine that can reduce and relieve bloating which can then relieve the pain somewhat.
It's a shame your mother isn't that supportive and wants you to push through the pain; that's not always possible! Your mum might be concerned that you're missing too much school, but also is unable to fully understand and sympathise with what you're experiencing.
It sucks that she puts added pressure on you by essentially implying you're causing your parents to split up. If that ever happens, just know that it's not your fault. A strong marriage wouldn't fail because their child is unwell.
I hope that you get the help and support you deserve soon. It might get a little easier when you're older, because then you can have private appointments and really advocate for yourself with doctors. That's hard to do with parents around.
This reminds me a little of when I was a teenager. I had underlying medical issues causing what they thought was just GI and I had mono same year and they thought maybe I just didn't want to go but walking and doing full days was hard I was exhausted and had episodes kept needed picked up. I know now they didn't understand and I didn't have the language to say you can't see my pain or fatigue but it feels like mono U now have chronic fatigue and I do want to go but can't make it all day. My mom didn't have a lot of support in other options from the school so I got my degree through the community college and went on to college like my friends just later but I did miss the social parts though I am going to a reunion soon. I hope you can try to talk to your family and explain if your doing the work but it's attendence maybe you can get accomodations or tell your GP how much your pain and fatigue is affecting your ability to go so they can help before it affects work or social too later on.
Practical advice:
Diet: high fiber.
Treatments: colonics, massage.
Habits: Anger/sadness management, meditation.
Holding Space for You:
Bowel disease is miserable, humiliating, chronic, mysterious. It tangles the lines between physical and mental disability like no other condition. I feel for you because I've felt what you've felt. I was bed-ridden with gut issues for years. So much time lost I'm never getting back, and the only way out is forward. Sometimes we have nothing to give but caring.
My Experience:
For me the strangest part was the adventure of it. At my sickest, I would lay I'm bed and do philosophy, thinking about the universe just to pass the time. And there was growth within that. Maybe that's not something you want to read right now, but bowel disease is part of my story.
Talk to Us:
What are the best and worst parts of your sickness? Like being cared for or managing pain. Open up and share.
<3
You have a soul like everyone else and your life is as much a journey of growth as any other. The course of disease is healing like the course of life is death. Keep going.
Hi Jo, I only just read your post, and I can sympathize and empathize and totally understand where you are coming from.
@MildJo hii
@MildJo Akkhh, how terrible. 😔 I have IBS too. The thing is most of the time it's not like yours...from your story, you seem to have a worse case. I was DX'ed with mine in my mid-20's....I don't want to say how long ago that was. 😒 Unfortunately I don't have much advice that you'd find useful.
You already know the tips I would give you: avoid caffeine; avoid anything spicy; be careful with beans, etc. I've never done the FODMAP diet. I can say that while it's important to get enough fiber in one's diet, we IBS-plagued folk must be cautious about it. Not all IBS cases are alike, either....I'm okay with potatoes, but that does not mean you will be.
I too have heard it's basically stress-related through the involuntary nervous system. This is the crux of the problem: we're supposed to avoid or reduce our stress as much as possible in order to reduce flare-ups in number & intensity, but you can't achieve anything in life without stress--& managing flare-ups often causes stress itself. The only way to be truly stress-free is to be inanimate or dead...a solution that most people don't go for.
Your mother was obviously at her wits' end that day she barged into your room with tears & yelling. That doesn't excuse her conduct but it does explain it. All you can really do is remind her when necessary that it is not under your control--no chronic condition is; otherwise we'd all get rid of them!--& thus, you cannot rightly be blamed for it.
All I can say is to some extent, I know how it is. IBS isn't usually life-threatening like some other chronic conditions but it is surely the most embarrassing one to have. (Letting out those butt-notes in public doesn't get any easier...sometimes you don't have a choice) No doubt you've run or shuffled to the nearest bathroom like a little kid more than once; I've done it many times & will do it again.
One way to reduce stress is to not give undue weight to others' opinions. For the most part their opinions of you don't amount to a jar of cold *** in February...it can be hard to see that when you're in high school & might be especially difficult for teenage girls, but it's true. Really. Once you get that diploma, which you will, everything you've seen, heard & felt in school will cease to have any importance.
That goes double for people you talk to only on the Internet. The fact is in all likelihood you won't ever meet them in person, including me. I'm just a screen name, girl...far as your life is concerned I might as well be a bot or someone working in tech support in India. (I am neither of those but you get the point)
Let's distill it down to a basic rule: the only time another person's opinion of you matters is when you care about that person for good reason (such as a spouse or kind relative) or when you depend on that person for something, such as whoever pays your salary. Apart from the foregoing, beyond basic consideration/manners there is no reason to give a s*** what other people think.
What does this have to do with IBS? It can help keep you from stressing out unnecessarily, for one...sticking to that maxim should make your GI tract more manageable & well-behaved.
Be sure to let us know how you're doing every so often.