Feeling lost

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hello all

,well, I've suffered from crowns symptoms for over 25 years now, I had a colonoscopy in 1997 which was clean. After this I've not been able to get a gp to listen to me.

fast forward to May, I've lost over 2.5 stone in the last year and my symptoms got worse. Been in a and e twice in 2 months, had a failed colonoscopy as they couldn't get round. This week I had a ct and X-rays in e.d. Showing terminals ilium disease 20cms and stricture. I was offered another colonoscopy but declined, I'm not going through that when they can't get round.

i self discharged after being faffed about in a and e for 36 hours. I found out what was wrong when I asked to leave.

its taken 4 days to be given steroids and antibiotics, which I've not taken because they scare me and I feel a lot better than I did.

my issue is , I can't accept what's wrong with me, and I want to hide.

my husband isn't really a talker and I feel isolated ? Does anyone else feel/felt this way?

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21 Replies

  • Posted

    Dear Alfielefoo,

    You are not alone and of course its hard to accept, but you really need to get a referral from your GP to a gastrenterologist and the inflammatory bowel clinic/specialist nurse for support, don't just wait till the pain is really bad, no matter how scared you are. Crohns and Colitis are serious and do need treatment. Sit hubby down and tell him everything, he can't help if he doesn't know whats going on, Just tell him you are scared and need to lean on him for a bit. 

    Please check out the Crohns and Colitis Association website they will be able to link you to local people who will support you emotionally.

    I can't advise about whether you should take your meds, but they are bog standard treatment for a flare of Crohns, so many others have had these, and many will have got relief from symptoms. Personally I was much bettter during my first 2 courses of steroids 6 weeks each time over about a 9 month period, (Initial weight gain came off in about 10 weeks in each case, as did my moon face!)

    When it flared again for the third time in 18 months, they weren't so helpful, but that was because my stricture has now reached 20cm. I am soon going for a resection as the other meds (immune suppresant type) really didn't help, but again everyone is different, so bear with the specialist while they try to get it right.

    It sounds as if you have quite a high pain threshold, but Crohns can make you feel fatigued, achy joints, and dehydrated- and it creeps up on you and you can forget what "well" really feels like. When we are really tired and drained its harder to cope with hospitals and to be strong, which sound like what happened to you during emergency admissions,  and we just want to go home and crawl under a duvet, but you really need to get sorted in a controlled way. 

    Let us all know how you get on. Good Luck and keeep hydrated 

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    • Posted

      Thank you sharon,

      My phone changed crohns to crowns!!

      I am seeing the gastro a week monday, and hopefully will move forward from there. I shall call my gp and see if i can do a half dose of the meds...

      Im sorry to hear youre having to have surgery,its never a nice thought.

      Youre so right with saying that you forget well feels like.

      Im sure my self pity will pass ; )

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  • Posted

    Before I was officially diagnosed with crohns, I suffered really bad with pains and having to go to the bathroom a lot. I lost 3stone in just over a month, and it affected work because I kept calling in sick. When my consultant said that I would need to take tablets everyday for the foreseeable future I was devastated. But since then my crohns has been fairly under control. That was 10yrs ago, and in that time I've met a wonderful man and had a very lively little girl. I still have my bad days but I try not to let it affect what I'm doing if possible. Although it can be completely draining. Thankfully I've never been admitted to hospital with it. Although after a recent Mri, my consultant has said it has got worse and I will need to take immunosuppressants. I was in tears after that visit because of the side effects and risks. But I have to trust my consultant is trying to do the best for me. At the moment I am constantly in pain and can't remember what normal feels like. Despite having a very supportive family and friends I still feel isolated at times. That's why I've recently come into forums like this and joined the crohns and colitis uk. They have a helpline and email you can contact if you ever need a chat about medication or how you're feeling.

    I hope it all works out for you. this is a horrible illness which a lot of people don't understand. Don't let it be the boss of you!

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    • Posted

      Thank you!!!!

      im glad I'm not the only one who burst into tears!!!! 

      When do you start new meds?

      youre right, my dad keeps telling me it's something I've eaten, which to an extent is true....if you're rough, you don't always know until after?

       

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    • Posted

      Go back to consultant mid Nov, earliest appointment I could get. Although I'm in no rush to get on these tablets if I'm honest. I know they could make me feel so much better but I'm also aware of what else they could do to me, and even though I'm in pain everyday I know that I can work through it.

      I get it from my family too.... It's something you've eaten. I also get my partner saying try this food and that food, he gets frustrated because I won't try a lot of new stuff. When I say I can't he doesn't really understand why. I don't think people understand the effect of stress has on us either. I know stress makes mine flare up.

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    • Posted

      Is it the immuno things you're having?

      i think stress doesn't help no. I have anxiety anyway, but stress is a different game!!

      ive been avoiding foods and trying foods until now, now I'm eating soft and bland till I see consultant.

       

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    • Posted

      Yes immunosuppressants. Not looking forward to them. I have to use public transport to get to work, which are full of germs, so I know I'm gonna go down with something.

      I also have anaemia, possibly caused by the crohns, so am on iron tablets. When my levels get low I start having palpitations and the odd panic attacks because I feel so rough and light headed. I certainly seem to worry about more these days than I used too.

      I expect I will just have to wait and see what consultant says.

      When are you due to see yours?

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    • Posted

      If it's any help, my aunts been on them years and worked in a Germy chemist and was ok. My dad had them for kidney disease and was fine.

      however, if you're anything like me, it doesn't help!!

      im sure that palps and panic are worse through anaemia? I've got 'naturally' low bp and I swear that's part of the problem with the panics too.

      seeing consultant a week tomorrow, and I already don't fancy going as I'm part convinced I will get a different diagnosis or even more 'special' tests. Tests which give you pain and bad guts.....

      do do you find it easy to talk to your friends and family?

      i get awkward and feel they don't get it at all.

      i guess as I'm a stay at home mum, at least I don't have to worry about work now, unlike yourself.

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    • Posted

      At first it wasn't easy talking to anyone about my crohns. But things got easier, and now poo talk is second nature. I don't get embarrassed anymore. There's no point as there is absolutely nothing I can do about the situation. A friend of mine at work has severe IBS, obviously crohns is a lot more serious than IBS, but she suffers, so quite often we will sit there and have a discussion about our bowel habits. Which can be quite therapeutic for both of us. If you find it hard to talk to friend and family you can always phone the crohns and colitis helpline. From what I understand it's manned by people that suffer and people that know the condition really well. Obviously you have people on here to chat to as well. Hope this is helping you in some way
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    • Posted

      It is thank you!

      just knowing I'm not alone.

      my husband has ibs ,and I think it's under rated in terms of pain.  

      Have a good day

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  • Posted

    Hi Alfielefoo, I know what you went through. I have been in hospital twice, been through a lot. I felt alone being told have crohns and waking up with a ilestomy stoma. You have people here on forum you can talk too.
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    • Posted

      Thank you for your reply.

      do you have your stoma permanently? Has the surgery helped you feel better?

      i think people who don't have it don't understand how rough it makes you feel!!!

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  • Posted

    Hi

    im really sorry that you are having such a rough time of it, I've had crohns about 23 yrs and some days it still feels a bit like a dream,

    its really hard for other to understand how much pain, or how dog tired you feel and just can't get out of bed, how sitting on the loo again is depressing!

    But the support that you can get, the people you will meet, will help with this part, we have all been there and want to help you through!

    this may sound a little mad, but over the years I have done quite a few of the drugs that they give for crohns, and I've learnt not to read to much about the side effects, I read the paper insert so I've got a rough idea what I should be looking for then put it to one side!

    i used to read them all, check it out on line, spend hours trying to find more and reading other people's stories!

    Then one day my dear husband said "you know you might not get any of them, everyone is different"

    Anyway take it easy xx

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    • Posted

      Made me chuckle!!! I'm really bad at drug researching, down to reading clinical trials ; )

      the tiredness is absurd, and if I disappear to lie down, one by one, the family follow me upstairs, along with cats...then the dog......

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  • Posted

    Hello!

    Life can be a bit of a bummer (please excuse the pun) with Crohns, can't it?

    I understand exactly how you feel as I have had it for 27 years. I think I have  tried every form of medication available. Even had anaphlyatic shock from a intravenous drug - which was, to say the least - unpleasant.

    I do have to say that from my experience steroids have had the best result. I don't like taking them due to the side effects but, over the years, they have really made life easier and less painful. 

    I got to the stage where the mass in my ileum had calcified and was incredibly painful. So after putting off surgery for 20 years I finally succummed in April and have had a loop Ileostomy. Not something I wanted but I hope for a reversal in the near future.

    I would recommend that you ask for a referral to a gastroenterologist. There are so may treatments available and although it takes time to find one that suits, it will make you feel a whole lot better when you feel that something is being done to help.

    I totally understand the way you feel about not being able to accept the illness. I have been there and felt totally alone, scared and frustrated that no one understands. It's a real shock when you realise that you have absolutely no control over what is happening to you! 

    There are local groups that you can contact via the National Crohns and Colitis Association. Or it may help to have a bit of a rant online to like minded people who have had the feelings of despair themselves and have come through it. There are so many people out there who want to help..

    Don't be afraid to ask anything! No question is insignificant and a listening ear from someone who is a complete stranger is often more beneficial than someone who is close to you.

    And don't feel bad about feeling sorry for yourself! You're entitled! It's a crap disease that, until you're unlucky enough to experience it, is difficult to comprehend. If I had a pound for every time that someone said 'you're looking well!' when I am definately not feeling it, I would be a rich woman..

    Well, I truly hope that you start to feel better soon!

    Just remember that you are not alone. There are thousands of us out here gagging to share our experiences!

    Take care! 😊

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    • Posted

      I think one of my issues right now is how it's been 'missed' or dismissed for so long!

      as I had the cope in 97, I've been pretty much dismissed by all my gps.

      oh it's a bug/food poisoning etc etc.

      it took seeing a gastro and paying, then going to a and e to get anywhere.

      oh well.

       How are you feeling after your loop op?

       

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    • Posted

      Hi

      thank you for your story it's really helped me, but I can relate to your story!

      thank you x

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    • Posted

      I wish I could say that I'm surprised that the medical profession didn't take you seriously. Unfortunately it's usually misdiagnosed as IBS or a stomach bug. I had great difficulty in being taken seriously until I had a flare up which included a patch in my mouth like a crater.

      Nowadays though is a different story. Any ailment is blamed on the Crohns even when it quite clearly has nothing to do with it. I often wonder what would the diagnosis would be if I broke a leg...

      I've had plenty of run ins with the 'specialists', including a surgeon who actually shouted at me because I disagreed with him! What a charming individual! Another specialist accused me of using the Crohns as a way to lose weight. As if you would put yourself through the agony when you could just go on a diet!! The same one 'wished people like me didn't go on exotic holidays' when I wanted to come off immune suppressants so I could have some jabs for a holiday in Goa. He was a particularly unpleasant individual who had apparently undergone a personality bypass. He was totally knocked off guard when I finally had enough of his attitude and gave him some home truths about the way he spoke to his patients. It was apparent this hadn't happened before and he did apologise..

      The ileostomy has taken some getting used to. As it's only just over 4 months since the op it's still concise red to be settling in. There have been some embarassing moments when it has leaked. You know with diarrhoea you get a warning that something unpleasant is about to kick off? Well when you first get a leak the signs are difficult to recognise. Sounds daft but the first time it happened to me I only realised when I felt a wetness and realised I had a massive wet patch of yuck down my jeans. Of course, it had to happen when we had gone out for a meal! I don't have kids and often wondered why people who did carted some much stuff around with them. Now I fully understand the need to have a few essentials and a spare set of clothes with me! Fortunately these incidents have been few and far between. 

      It can get uncomfortable and sore and the stoma can make some incredibly loud gutteral noises at inappropriate times (usually when you're in company and there's a lull in conversation) but it's manageable.

      I know that the people who have these things permanently are able to get on with things and have a better quality of life because of them. Some even choose not to have the reversal.

       

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    • Posted

      Bong, you have a sense of humour qhich has obviously gotten you through some tough times!!!!

      Your stoma sound interesting, and i did not realise they could leak, how naive! But i guess its a learning game never having dealt with one.

      Do you see a different consultang now? I had the 'pleasure' of working with a specialist with that attitude, and it is very undermining to say they least.

      The nurse looked shocked when i declined the antiemetic , as i had been sick. I pointed out that was a surprise.

      Do you have to continue meds and limit diet still?

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    • Posted

      Hi Alfielefoo

      Fancy turning down the antiemetic! I bet the nurse had never witnessed that before! Can't say I blame you. After all, who wants to try to swallow some tablets when they've just been sick and don't know how soon it's going to be before they barf again?

      I'm curious to know if the experience of working with a specialist with attitude has put you off the medical professionals altogether? I'm wondering if some inside information on how people are treated make you wary?

      I have moved around the country quite a bit so have seen quite a few different consultants. The one I see now is ok and not so concerned about how much the medication costs in relation to what he prescribes. It was, however, probably a relief for him to pass my file over to the surgeon.

      The surgeon is a young guy with a totally different approach to the old school way of speaking down to patients. He is very easy to talk to and genuinely wants to get you sorted. It make the hospital experience a whole lot more bearable!

      As for diet I have been a vegetarian for years. This was a choice I made for health and moral issues and it suits me well. With the stoma you have to avoid hard food which can cause blockages. Things like nuts, celery, pineapple, sweet corn - especially popcorn (yuck!) and have to chew things like mushrooms very well.. It amazes me how you crave for something you're not supposed to have. I salivate at the thought of celery. Yes, really! 

      I take loperamide (Immodium) to reduce the liquidity - as the stoma stops before the colon and this is where your gut absorbs liquid. I also have codeine for pain relief but don't need it for that. The stoma care nurse suggested that it can help thicken things up should I need it, but I only take it if I'm struggling to get to sleep. It reduces me to a zombie like state. I call it relaxed. My husband calls it stoned!

      Apart from that I consider myself to have got off lightly. I agree that the sense of humour helps. It's also got me into trouble more than a few times too but I don't care. As I get older my tact veneer is getting thinner. I feel that I could be destined to become some sort of crazy old woman who has a preference of the company of cats to humans! Way to go!

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    • Posted

      I think I may be a couple of years younger than you if 68 is your year of birth,

      And I I already have 3 cats in my collection😃, I also encourage the company of other storage cats.....

      i dont think im put off altogether, I think Its more anxiety and I flip out.

      very good at looking after others, yet when it's me I want to run far far away!!

      ithink the veggie diet is probably good as it's easier to digest?

       

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