Ibsd has ruined my life I'm 30 and I have had ... - IBS Network

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Ibsd has ruined my life I'm 30 and I have had this problem since I was 20 please help

18 Replies

I've been on colesevelam 625mg for two months now I take 6 a day along with 6 loperamide an 6 codeine I have some good days but mostly bad days I don't go out I can't work I don't talk to my friends any more diarrhoea has ruined my life I'm 30 and I have suffered with this since I was 20 I honestly don't know what to do anymore I have been tested for everything and the tests always come back clear witch is so frustrating If I won the lottery I would give every penny away if someone could find a cure for me I want my life back I feel so alone it would be so nice just to chat to someone who is going through the same thing as me

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18 Replies
asbayford profile image
asbayford

I'm so sorry to hear you are dealing with this! You're not alone, I'm 30 aswell and dealt with this since age 27. The low fodmap diet has sorted mine 99%, I had urgent IBS-D, with cramps etc. Every few days or so... never knew when it would hit. Turned out I was intolerant to fructans and lactose fodmaps.

Have you tried that diet yet?

You can download monash university app on your phone and get used to what is safe and what isnt, aswell as a symptom&food diary (I use Tummi app), asking the gp for a fodmap dietitian referral would be best too.

I really hope this helps somehow, wishing you well x

in reply toasbayford

Thanks for replying I will give the app a try I'm suffering from depression and anxiety do you get any mental health issues with your IBS if so how do you cope

asbayford profile image
asbayford in reply to

Oh for sure! It's usually part of the package unfortunately :( I manage mine with an antidepressant called mirtazapine and cognitive behavioral therapy. But the main thing is getting the dirhorrea under control first then move onto the anxiety. I def would give this low fodmap diet a try for 6 weeks, see if it makes a difference x

in reply toasbayford

I take mirtazapine 45mg it has helped I'm in a lot better place mentally but when I have a flair up it feels like I'm back at square one

asbayford profile image
asbayford in reply to

That is a very reasonable feeling during a flare up, I feel your pain :'( maybe speak to gp about CBT aswell as fodmap diet, I really think these could help you alot. If not - then it was worth a try right? :)

in reply toasbayford

I've done CBT I have tried a diet but I didn't stick to it I will give the diet another try thank you for replying it's nice to know that there are nice people out there

asbayford profile image
asbayford in reply to

Very welcome, please update us with your progress :)

in reply toasbayford

I will do I usually have a flair up in the morning but I feel a lot better now don't take this the wrong way but it's nice to know I'm not the only one this happens to

asbayford profile image
asbayford in reply to

Not at all! It really does help knowing you're not alone doesn't it. I hope posting here gave you some comfort even for a little while :)

in reply toasbayford

It has I don't usually talk about what's going on with me once again thank you

realcr7naldo profile image
realcr7naldo in reply to

Go for homeopathy, it will definitely help yours. I got cured by homeopathy.

jbrking profile image
jbrking

Have you been tested for bile acid malabsorption (bam)? Diagnosed CIA a sehcat scan. Although they would give you the meds you are already on. Low FODMAP is good. Also after suffering for 25 years and being misdiagnosed now on binder meds, you may also be deficient in various vitamins. Look at the bad-uk.org website it gives a list. I was severely deficient in B12, D, iron, potassium and can’t maintain a level of a good cholesterol so I have to take supplements for all and feeling a little better. You also need to find what triggers. Wheat, dairy, caffeine are all common ones. I had to cut all. I loved diet fizzy drinks and had to stop them. I don’t eat red meat, and in fact in Jan I cut out a lot of meat so most of my meals were vegetarian and I gave to say my bowels have been better and I’ve been able to cut my meds. Have a serious look at what you’re eating and drinking. Ps it is possible to have IBS and Bam. Good luck. It’s not nice I know.

in reply tojbrking

Thanks for replying I'm waiting to have the bam test I have changed my diet I get really bad paranoia how do you cope

jbrking profile image
jbrking in reply to

I think I’ve just learnt to cope. Worrying/anxiety makes it worse and no point worrying about things you can’t change. Finding food what works certainly helps. Maybe try different binder meds. Some find colesevelam ok, I take cholestramine which are sachets to mix with water. Maybe try changing to see if they are better. I have a very supportive partner who realised that sometimes I just can’t go anywhere or we’ll be late or when I say I need a toilet I really mean I need a toilet and he helps. There are apps like toilet finder too! I have a blue badge due to other ailments so that helps too for parking and you can also buy a radar key to unlock disabled toilets. I’ve never judged anyone that uses them as disabilities are not always obvious to the eye. Always carry spare clothes and wipes with me. Remember you have to live too xx

301246 profile image
301246

I can identify with what you are saying as this awful condition has also ruined the wonderful life i had. But you are so young and need urgent answers. You will have to go privately once lockdown is over. I am booked for Lidocaine Infusion for pain relief but only successful 41% and then if works gives'50% better quality of life. Mine has been classed as refractory meaning difficult to treat. Constipation, trapped wind, bloating makes me pull my hair out day and night. I was diagnosed SIBO also but no action taken for this.I think my problem lies in the small bowel and if the Lidocaine works, it won't get to the route cause of the condition. Don't give up and fight your way for an answer. My heart bleeds for you. Good luck.

in reply to301246

I've tried to go private but I've been told many times that if it's an on going issue they couldn't help have you got any advice for me please

Viklou profile image
Viklou

Oh good gracious me. You have it really bad. You definitely need sorting out.

I suppose I'm lucky in that I don't suffer anxiety with my IBS. It must be terrible to suffer with both.

in reply toViklou

I have felt better lately less bad days and I have been able to go out more but in the back of my mind I can't stop thinking about my ibs I think about it more when I'm out probably because when I have a flare up it's really bad and there's no warning signs maybe I need to go to speak to the doctor about some mental health support

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