Patients Crohn's disease
How does Crohn's disease affect your mental health? How do you cope?
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Hey everyone, I'm new to this community so hopefully I can get some guidance from anyone who might of been in my situation, please see below a rough idea of my journey so far .
I am 22 years old and in July of 2019 I got diagnosed with chronic chrons disease. I had no symptoms of chrons disease until June. My bowel started moving up to 30 times a day and the pain in my stomach was unbearable. I went to my local gp to get bloods to see what was going on. A week later he referred me to my local hospital as my bloods where very bad to the point the lab throught this was an error.
In the space of three weeks I had lost just under two stone and I was very weak and drained from the whole situation.
I have been deemed allergic to infliximab, humira and stelara. After being allergic to the above and the stress of the whole situation I opted for surgery in November of 2019 and got over two foot of my small bowel removed.
After the surgery things were looking up the bowel habits had slowed I was feeling like I had energy again and I was gaining weight. Six weeks post op I was due a checkup and all of a sudden my bowel habits increased rapidly. I felt something wasn't right. I was experiencing bad pains. I ended up in A&E 7 weeks post opp as they were behind on appointments. I underwent more test and they confirmed the chrons had came back on the surgical site and I've the start of perianal chrons also.
When I went through the surgery my surgeon managed to perform it without me needing a stoma which I was so grateful for as I'm on 22 and I can't work my career with a stoma.
I am now currently receiving entyvio to try put the active chrons into remission but I'm finding it hard to believe this will work for me.
I find it very hard to have a positive outlook on life. I feel like the world is against me. I've had a very tough year with my partner and having a new baby on top of the diagnosis.
I find that when I'm stressed or upset my body looses it's appetite and I stop eating which is obviously bad for chrons disease.
If anyone could give me some advice on how to deal with my stress and chrons it would be greatly appreciated as I've tried counseling and breathing exercises etc but it's just difficult to explain how I feel to a counselor who doesn't understand the effects this hidden disease has on your mental and physical health.
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@DanielW Hello DanielW, thank you for opening this discussion. I'm so sorry you've been through all of that. This is an important topic, as we don't talk enough about the effects inflammatory diseases can have on our mental health. Let me tag some members who can share some advice or experiences with you.
Hello everyone, how are you today? Does your Crohn's have an impact on your mental health? If so, how do you deal with it? Do you have an tips or advice on how to cope with the stress and stay positive? Feel free to share here, we're all here to support one another!
@Smax123 @Aimi19 @Kenny1979 @Yogita.parmar @jacquiT @Tc1964 @cheeselady @GailMac @rachneildavo @Lexi2003 @Pinknicky @Blue2k69 @Mandypaul1 @Claire02 @imogen1405 @Angiejohn @Suzie131 @Vivrock
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Courtney_J, Community Manager, Carenity UK
Good morning all I was diagnosed with crohns just before lock down I am 40 and have had problems on and off for years it was always put down to acid reflux but recently in the last 6 months I have went from going to the toilet 4-5 time's a day to 20 with excruciating pain I am constantly exhausted it has been a pretty rapid decline i have a decent diet but it doesn't matter what I eat doesn't seem to be an exact trigger not having any energy is soul destroying I have always worked in physically demanding jobs and been quite fit now carrying shopping up stairs can wipe me out and now im not allowed to leave the house as I am in the shielded group and I'm not used to being this vulnerable this is causing me to become depressed is there any advice on how to deal with the massive changes this has placed on my life ?
@Kenny1979 hi Kenny, sorry to hear about you're recent diagnoses. I feel your pain. Have your medical team referred you to see a dietician to advise you to maybe try a low residue diet?
I've been using the low residue diet since diagnoses, it's hard to adjust but it might be something too look into to help with your high bowel movements?
Have you started on any medication to try control your chrons?
I'm not too sure I can help you in relation to the mental side of things but I just thought advising about the diet might ease your pain and bowel movements
Thanks Daniel I have been put on a course of steroids called Prednisolone I would be interested in any dietary advice that worked for you not been referred to anyone regarding diet due to lock down but I am hearing a lot of things that would normally be classed as good for you is in fact detrimental to me because of crohns thanks very much for any advice it would be greatly appreciated.
Their is a link to what food you can and can't eat. Now everyone is different depending on how active their chrons is or how bad but I say most of your dirrehea is caused by you eating fiber.
I like to keep a diary of what I eat from morning to night and if I notice my bowel moves straight after or my stomach feels upset I try avoid the food. The diet is hard to stick by but I'd advise trying it until you see a dietician to advise you better.
Once you have the chrons in remission you can introduce new foods etc so it's only a temporary diet for some people.
Try drink dioralytes if your bowel is still moving as much as you stated it will help with dehydration etc.
Also have they prescribed any tablets for the high bowel movements to hopefully slow down the dirrehea?
You can access creams aswell and like a numbing cream also because going the toliet that frequently can hurt,
my bowel is the same and continues to move over 20-40 times a day so I just thought you might like to query that with your doctor. Also flushable wet wipes are a life saver! I'd advise to use them instead of tissue it's much more gental.
If theirs anything else I can help you with I'd be more than happy too. The only thing I can't help with is the mental side of things hence me starting this discussion 😂 but any other questions you may fire my way
Thanks Daniel I will give these things a go and keep a closer look at the things I eat see what improvements that makes thanks for taking the time to give me some tips I appreciate that.
@DanielW I've been struggling with the mental aspect of Crohn's for a long time. I tried to fight through the stress and depressive feeling on my own for a few months, but when it all became too much I talked to my doctor who helped me find a therapist to talk to. I've been working on finding ways to cope with my stress and it's been helpful to me.
When I was looking for information on it all, I found some videos that Crohn's and Colitis have done and it was helpful to me. They have a good one here on the stress cycle in Crohn's: https://www.youtube.com/watch?v=Qx1oJDZIDhA&
I hope this helps you a bit! Chin up, you can get through this!
I really have a hard time with this too, I think my Crohn's is at the root of my anxiety and chronic stress issues. I try to work on it in a more "natural" way with yoga and breathing exercises and meditation, but it only goes so far. Has anyone tried anti-anxiety or depression medications?
I am brand new on here and am struggling In October I got diagnosed with crohns after a month spent in and out of hospital it came totally out the blue one minute I was fine next minute I’m on the toilet 20/30 times a day. I feel lonely and isolated and a burden to my husband who has been amazing but I feel I’m always crying and sad and in pain and understand how hard that must be for him
Im on steriods which make me cry and eat haha
would love to hear from anyone
@Tosher hey tosher I'm sorry to hear about your diagnosis. Have you been put on tablets to help the dirrehea or pain and also double check with your doctor as you shouldn't be getting mood swings on steriods
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