needing support nobody understands

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Hi

ive had this illness for over 15 years now and still not sorted been doctors and hospital but still no luck people dont understand unless you have the illness i have the colitus and ibs

on loads of meds to im all ways tied and been loseing blood now for 1 month and half

but the last few weeks ive been haveing attacks while driving and its scary coz im 31 and now after 15 yers i fill like i have no control over my bowel my bowel is running my life it seems

i get very emaressed with this and get stressed if im going out i will get up 2hrs b4 i need to leafe and vist bathroom loads of times even if i dont need to go my head is telling me i do but i dont

how to people cope

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17 Replies

  • Posted

    Hi Simon,

    I haven't had te disease as long as you it I can understand your anxiety with the toilet trips and going out. I've been there too and it's a dark place to be. I did find with myself trying to relax and do some kind of relaxation technique did help. I know you will think that is stupid when you are driving in your car and know you desperately need the loo but I experienced this too, I thought I wasn't going to make a 15 minute trip down the road to get my so to work, I got so upset, I really thought I was going to lose control. I started to think calming thoughts, I'd try convince myself I was okay and I wasn't that desperate, even though inside I was panicking, it did work though, at least until I'd reached the supermarket where I knew I could rush in to use the toilet.

    I found if I could get the anxiety under control it helped with the urgency. I know this is difficult but it may help you.

    Can you talk to your GP or Consultant, or is there a help and support group near you that you can join? Sometimes talking to a stranger that has similar issues and learning how they cope is helpful. I wish you well.

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    • Posted

      thank you for your reply

      ive just moved and changed doctors and they hav lost all my notes or havent recieved my noted from last doctors

       i no its the anxiety that gets me its a bad circle as im on deperssipn tablets to but still get all itchy when im in car but once im no were the loo is im all fine coz i no im safe its my mind rulliling my bowel at the moment

      but coz ive had 4 attacts this week while driving its emaressing and puts me in not a nice mood for the rest of the day

      im going to have to go back to my g and then go and have more camerras down which i rely dont want to do as ive had 9 now in 15 years

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    • Posted

      Yep it plays with your mind I know i never had anxiety till my flare and accidents it's so horrible and people don't understand unless they are your close loved ones or have this condition..

      That doesn't help they have lost your files still that happened to me so more conmon than you think I got a second opinion so that maybe worth a go ?

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    • Posted

      im going to see them to see what they can do hopefully i get a doctor who cares

      i rememeber when i first got this the doctor thought i had piles it was only coz i kicked of that they did test and got told i had uc

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    • Posted

      Are you local to London ? I was at the uclh hospital and st marks hospital are also very good do your homework you will be able to get a referral from your gp you can request whichever doc you want..
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    • Posted

      thats were i was going they did make me better up my tablets and it did the trick but now there not working

      i fill my body has got used to my meds now

      im not sure that can happen

       

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  • Posted

    Hi Simon

    I have had UC for 12 years now I am 34 now had a bad flare 9 months ago which lasted 9 months started when I was 7 months pregnant and only stopped when I had an illestomy mid sept this year.

    I know that horrible feeling too well every day of my life with a flare I was going between 10-20 times per day so tired and weak from losing so much blood in the end I got so bad I had to go to hospital where they operated 1 week later I had tried everything all the meds //diet //u name it I did but after exhausting every option before surgery I had no choice.

    It's all new to me but I have no regrets it's going to be a long journey for the next 18 months j pouch op then hopefully reversal but so far beats trying to cope with this evil disease..

    Being able to sleep for a full 7 hours is amazing compared to the nights up and down didn't ever get no more than 2 hours sleep at a time life was real bad trying to cope x

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    • Posted

      hi

      thank you for youremail im normaly going about 6-10 times every morning but for the last month and half ive been loseing loads of blood every morning its like a running tap some mornings

      but this week alone ive had 4 attacks while driving  its never been this bad in 15 years ive had this nasty health

      im thinking i may have to have this opp i rely dont want it as im self employed plaster and play sport but i caint keep having attacks whilie driving and all ways filling tied

      how des it effect your life day to day if you dont mind me asking

       

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    • Posted

      Hi Simon

      I was the same it was ok for a good 10 years then one day it was like a switch life changed and hasn't been the same since and with having a baby by c section I'm only getting over that surgery then to have this less than 1 month ago it's been tough I held it out for so long one because I couldn't bear to leave my baby and wanted to make sure I knew in my heart I have done everything possible to help myself before surgery.. 2 of my friends had it done and they both say they should of done it sooner now where I've had the op I agree.. Please don't put yourself through this longer than u have to and remember no good surgeon will operate unless they have to.. What meds are u on ? I did pentasa oral suppository enemas then prednislone which I hated !! Worst side affects ever .. And didn't work then I was I injecting humira still no joys and was also taking mercaptopurine I also changed my diet so many times my hair started to fall out / had the uticaria hives rash / u name it I had plus iron drips as I ended up anaemic I understand about being self employed as my husband is and it's not easy ..but if u haven't got your health eventually u won't be working in the grand scheme of things you have to look at the bigger pic yes it's hard to get your head round it and yes it will be very different but life will be so so much better day to day for me is I have more strength //sleep better //eat without running every 5 mins to the toilet able to go out with having a panic or an accident it's better than wearing big pants ha ha yes it's weird having your bum on your tummy but in time I can have it reversed so there is a light now where before there wasn't this is so much more common than I thought so please know you aren't alone as I really felt I was :-( I used to run done 1/2 a marathon before I had my little boy and work out hiit training used to be 4/5 times per week my docs says I will be able to do that again in time I think it's skiing and rugby that are a bit of a no no what's your sport ?

      As for the bag it's ok If u do have the op u have stoma nurses they are amazing people and they won't let u go until u know what to do ...I was told don't fear your stoma its your friend which I named tinker and it's true it's not to be scared of as now I have a life before I didn't

      Sorry for the essay

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    • Posted

      my meds are azathioprine

      amitriptyline

      loperamide hydrochloride

      mesalazine

      i ve tried enemas but as soon as i did it i was in the loo straight away

      my worst part effected is the straight bit of the collen its shot to pieces and black

      i play korfball what is that you ask its like netball and basckectball

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  • Posted

    Hi Simon,

    Sorry to hear about you having a hard time right  now. I've had UC for almost 10 years now. My first two years were hell but I started using the SCD diet(Specific Carbohydrate Diet) which helped a lot, it isn't a cure and it takes time to see results but it really helped me. Right now I use Paleo I'm not low carb but if I feel an attack coming on I go low carb and it seems to help I would start with SCD and see how things go lots of free resources online.

    I've been lucky that although I've had some bad attacks(hospitalised once) I have mainly managed to get my life back.

    I think mentality can play a big part too. I use a relaxation hypno CD once a day just a Paul McKenna one, it's nothing magical I think any relaxation CD would work and have been experimenting with an meditation app called Headspace early days so far so I can't say if it's helping or not but I think it's important to find something that's mentaly relaxing just for 30 minutes a day.

    I supplement with both a B vitamin supp(12 most important for me) and a vitamin D3

    I think diet is the most important and most overlooked issues with UC.

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    • Posted

      Sorry to hear of your long time struggle Simon66110. I agree with Tony33900, try looking at your diet again. I recently learned from a herbalist and naturalist with over 20 years in the business that actually we should review our blood type to the types of food benefical good for us and not good for us based on our blood type. Most if not all the time, the patient is never told of this, curious to why but oh well at this point.

      You can find the list of foods based on your blood type at any local herb store that should have it or online once you know your blood type. There are alot of diet plans out there but once I learned this it makes sense, to start from this point of reference.

      Because once the infection or organ defect occurs, it enters the blood stream, hence, "changes the chemistry makeup of the inner body workings. And most of medical tests are off or only looking at certain perimeters missing the actual diagnosis, thats why so many people are searching for their own answers.

      I also learned that certain bad infections almost always target the liver which leads to ther issues and organs, that in particlar, to reduce the chemical of creating the bile that suppose to hold the bowel until ready, thus, the occurance of flare ups and issues of related discomfort.

      Its got to be at the start of the overall digestion process that starts with our intake of food. I suggest, not already, remove all foods with sugar and their disguised names. 

      And the prescribed antibotics seems to help but at a cost because it also removes all your good / bad bacteria. So, the ups and downs keep happening because the inner garden (digestive system) has not been replanted, grown and kept strong to fight off the invader causing the inflammation causing the malfunction.

      Also, on the bleeding, 1 tsp baking soda in water - can add honey for taste - usually helps or apple cider vinegar with a glass of water should help with the acidity level of the body. Take small sips due to any usage of other meds. Just a thought. 

      Hope you feel better. 

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    • Posted

      Also, for adding back in your good bacteria, a person should intake probotics, like plain yogurt, kefir, google for more names. To feed the probotics you will need to intake prebotics, like bananas (eat small amounts due to the high content of sugar), asparagas,onion. You might want to try raw garlic and see what its powerful source does to get to the main source of any hidden inflammation. Drink alot of water. Try and look for more natual remedies of removing any toxity if possible. Hope you feel better.
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