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Thanks for posting your replies, I just dont know how we can ever shut-off and cure IBS though. I have another gut/cell disorder as well which causes food allergies to everything so living off a diet of rice flake porridge and unable top breakdown solid foods so my mental health is at an all time low as now too unwell to work with the gut disorder and body is at a very low weight so I have been told I'm going to die early with my heart failing because its so week. Yet there is nothing the Doctors can do, so i have no future and with how my OCD is i feel life is just so pointless. I have no purpose in life. I know my emotions are probably not helping my gut disorder or any IBS related symptoms but what am i to do? why do i exist? i hate waking up each day

People say "have you tried therapists/talking/hypnotherapy etc" but none of that works because my gut disorder is still the same and my OCD thoughts never go away. How does anyone ever get out of a hole?

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3 hours ago, Lost222 said:

I just dont know how we can ever shut-off and cure IBS though. 

I really wish we could, but unfortunately I don't think we can. I was diagnosed with Celiac a few years ago but going gluten free wasn't the complete cure all I was told by the doc it would be People can easily overlook not just how much anxiety can affect the gut...but how much the gut can affect anxiety and then the thoughts/disorder itself. It can become a horrible vicious cycle can't it.

Have any of your doctors suggested seeing a registered dietitian about your food allergies? I don't know if you've come across them...but rather than avoiding all food groups and being limited to eating porridge, it could be a case of cutting out foods from the FODMAP group, would be enough to reduce your symptoms. Things like onions, artificial sugars, or even cherries can make matters worse for IBS/IBD sufferers. With a dietitians help you could slowly trial reintroducing different food groups, hopefully gain weight again and feel better physically.

Please don't give up hope tho' Lost. Just because some say there's nothing they can do to help you, that may say more about them than it does about your health issues. I was told much the same thing by one consultant...only to consult another who was prepared to put in the leg work and discovered what I was dealing with. I know it's exhausting coping each day with the disorder along with physical health problems, but please keep fighting for the help from the docs you deserve. Things can get better. It might take a bit of time, but they really can.

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Thanks Hal, it just seems I’ve tried everything with the diet in the past and as allergies have got worse I can now only eat a diet of rice flake porridge, rice pasta, carrot & pea puree. So its a bit of a groundhog, but then OCD is groundhog isn't it?

i’ve tried numerous dietitian’s, specialists etc but there doesn't seem to be much hope out there. 
i just wish my OCD wasn't there in my head  to make my life a tiny bit easier & less exhausting.   

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On 02/02/2021 at 00:14, bjork said:

Yeah! I have IBS relating to stress/emotions, specifically autism OCD anxiety etc

Literally was about to write the same. Hi bjork, sorry you struggle with all of these problems too, but you're not alone. :) 

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19 hours ago, Lost222 said:

Thanks Hal, it just seems I’ve tried everything with the diet in the past and as allergies have got worse I can now only eat a diet of rice flake porridge, rice pasta, carrot & pea puree. So its a bit of a groundhog, but then OCD is groundhog isn't it?

Groundhog day sums it up perfectly. I always felt it was one step forwards only to eat something I thought I'd be fine with and back I'd go another two. 

You're eating so little tho' you must be exhausted. I know some food supplements like Complan or Ensure can be problematic if you have an allergy to milk, gluten or soya...it might be worth asking someone about the possibility of another w/o those available on prescription. Not necessarily to take long term...just to help you gain aome weight and give the gut a rest. I know after battling something for so long it doesn't feel like there's any hope...but I honestly believe there's always a solution. It's just a shame it's so hit and miss with the consultants.

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Hello

thanks again for your reply to my post, i currently see a dietitian, immunologist & under GP monitoring because how weak my body is. Sadly though there is no nutritional supplements i can take or even tube feeding because of the allergy ingredients, so its a case of living off the rice porridge everyday. I really wish there was so solution or answers but all medics for over a decade have said there’s nothing that can be done. Honestly i’ve pleaded & begged for something, anything but there isnt anything,

My mental health is at a low point through all the gut & knowing that my body will just fail at some point. I’m 39 next month and hate that i havent got a future but feel helpless. I know my depression isnt helping my OCD, as that feeds off negative emotions. I always try to make changes to the OCD though but life does feel a constant battle.

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On 02/02/2021 at 12:09, Lost222 said:

Thanks for posting your replies, I just dont know how we can ever shut-off and cure IBS though. I have another gut/cell disorder as well which causes food allergies to everything so living off a diet of rice flake porridge and unable top breakdown solid foods so my mental health is at an all time low as now too unwell to work with the gut disorder and body is at a very low weight so I have been told I'm going to die early with my heart failing because its so week. Yet there is nothing the Doctors can do, so i have no future and with how my OCD is i feel life is just so pointless. I have no purpose in life. I know my emotions are probably not helping my gut disorder or any IBS related symptoms but what am i to do? why do i exist? i hate waking up each day

People say "have you tried therapists/talking/hypnotherapy etc" but none of that works because my gut disorder is still the same and my OCD thoughts never go away. How does anyone ever get out of a hole?

I completely relate to this. My gut is a mess and I have had countless doctors trips just to be told it's IBS try mindfulness!! Really easy to do mindfulness when your brain is racing with OCD!! I'm now not sure which is worse, the OCD or the digestive symptoms but I know I can't go on like this. So I'm about to try something a bit radical. Have you heard of Alpha-Stim? It's a medical device available on prescription in the US but only available to buy in the UK and at £499 it's not cheap but I have done a LOT of research on it and there are no negative reviews or stories about it, just people saying it works. It's been around for 40 years and is NICE approved but it's just too expensive for the NHS. What does it do I hear you ask? It's electrical cranial stimulation which is a fancy way of saying you clip two clips onto your earlobes and it generates alpha brain waves which is what your brain should be doing when you are relaxing. This reduces stress and brain noise, induces calm and increases serotonin, which is what those of us with OCD are lacking. There are tons of scientific papers on it's effects and it is currently approved for the treatment of anxiety, depression and insomnia, although there are also studies which found it helps with OCD and IBS. Of course even it just reduces anxiety both OCD and IBS symptoms should decrease. I read an article about a guy who used it to treat his OCD when SSRIs hadn't helped and he said it stopped his intrusive thoughts completely. Studies also showed that it gave a 61% reduction in anxiety symptoms which was higher than antidepressants. I have to say I haven't yet tried it so I can't vouch for it but I think it's worth a try and I plan to buy one because I feel I've exhausted everything else. Just thought I'd mention it because you sound as desperate as I feel most of the time and wondered if it might help you. It was actually on the BBC a couple of weeks ago which is how I found out about it.

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It’s reassuring to know how many are out there really struggling with both OCD & IBS. So many times people have said to try meditation, but I’m sure I’m not the only one who doesn’t find this method of relaxation beneficial in helping OCD or IBS. When I’m anxious it’s because there’s something that feels dirty & I need to clean it. I can’t relax until it’s done, if I were to lie down and listen to a meditation recording I can’t focus on it because all my head is thinking of is, what needs cleaning.

Ashley, Your Alpha-stin plan to help the anxiety sounds quite similar to something I looked into years ago. It’s deep brain stimulation surgery, like the Alpha-stin it’s not easily available but I’d be interested in finding out from you if you go ahead with trying it and the results. Deep brain stimulation still needs a lot of research on benefits and I think there are a lot of bad side effects to having it. 

But I do wonder when would be best time to use Alpha-stin? As by the time I’d sit down and use it I would have finished my cleaning rituals and wouldn’t be as anxious. But like you I am desperate to cure my gut issues, but then I know a lot of my gut issues are down to the food allergies rather than solely IBS.

It’s such a nightmare, and I’m sure the constant thoughts on why all this is happening to me.

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