Do you think this has to be one of the most embarrassing diseases

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I have had this since I was 23, and it is so humiliating, whether it's a rush to the loo where you 8/10 times don't make it. Constant oscopys, mainly when your awake. What are your feelings with this disease

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  • Posted

    Yes, it can be a pretty gross disease to have.  I've never not made the loo while I've been awake but a few times things got away from me while I was asleep.  It has definitely affected my social life and relationships.  Even now I'm in remission I still get caught short sometimes.
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  • Posted

    It makes it worse when others don't understand it too. I went out for lunch today with my boyfriend and thought i was over the flare id beeing having. I ate something that set me off straight away and had to make a run for the loo, and as i excused myself infront of the whole cafè my boyfriend goes.. "are you going to do a sh*t? Do you feel sick again? You havent even eaten much!" And i know he was concerned but he has no filter.
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    • Posted

      Yea, it would be best if he had just said ok. Then later he could say how are you doing. I think he means well just doesn't know how to say it.
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  • Posted

    I totally agree...it's embarrassing. Who wants to have to talk about bums, poo consistency etc... and then when you're feeling really ill they have to stick summat up your sore ass to find out what's going off! I've spent the last 24 years trying to be of the mindset that 'everybody sh**s, everybody's sh** stinks'... so what's the big deal! Even after all this time I still get the panic if I'm out and feel that OMG I've gotta go NOW sensation! I hate this illness with a passion and really feel for all of you suffering too.
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    • Posted

      That was the worst part as you know your back side is sore from going all the time and the doctor wants to put a scope up there. That really sucks. Even worse the prep. you have the runs and they give you laxative to clean you out. I told my doctor I really don't need this at all and it could be harmful to me at this point. So instead they gave me a low dose of this stuff and it was all that was needed. 
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  • Posted

    I find it so hard to get others to understand how nervous going out especially travelling makes me which, of course, adds stress so makes things worse. My husband is so understanding and tolerant but still dosent quite get that I can be fine one minute and rushing to the loo the next even though we have lived with this problem for years. Also if I have a bad loo experience the first question is what have you eaten ? Yeah I want to make myself ill for fun. Crappy disease in every sense of the word. Now am B12 and iron deficient so injections regularly to look forward to ! Good luck fellow crohnies .
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  • Posted

    That's the problem, we have these bouts and it drains our resources. Sometimes I feel like I am in some gross comedy. I know food and diet help but it's sad that we have to go through this. My ex used to make fun of me or just be nasty about it. Hence the ex?!?! But I am 40, and dating is so hard. Oh by the way I have chrohns so the loo will smell and I have accidents etc... 😩😖😖
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    • Posted

      Yeah not the most exciting intro to any relationship. I don't think anyone who dosent suffer with this can really understand what it's like. It has such an impact on your everyday life even when you are in remission.
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  • Posted

    Even understanding partners don't understand completely. I often get told ' you'll be fine, there's a toilet' How many times do I think.. if only it was that simple... It's the anxiety, sheer panic, noise, embarrassment, pain, smell, fear of not making it in time, queuing etc...I won't be fine, I'll be stressed!! And NO I wouldn't like to go on safari, on long walks, on day trips out...... coz I spend all my time thinking 'what the hell will I do if I need the loo!' Rant over lol x
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    • Posted

      When I was flared up I took Immodium AD and it helped stop the problem but I took high doses that my doctor told me to take. The mental aspect of it will get better as you achieve some control over the symptoms. I thought that I would never get better but I was wrong. It does go into remission.
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    • Posted

      I have about a 45 second window. That's it. I am lucky in one sense as I have had no operations yet. And was in remission for about 8 years. But it's back and here to stay for a while I think. I find my children are better At dealing with it than partners. My sister said I should write a book About it as the stories I tell her. She finds hilarious. And after it had happened I find I can laugh as situations too. Just at the time... 😳😳😳🙈
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  • Posted

    It can be, however I take it very seriously as it is a painful and disabling disease. I don't find it that gross as I have had mine under control for several years. If you are able to achieve remission then it isn't so bad, but the pain never seems to go away. I do hate the tests that are so invasive. This is the worst part. The doctors think it is no big deal. I get well just come in every year so we can snake a camera up your backside and then we will need to take several hundred biopsies so you will bleed for days, no big deal. For them it isn't, but for me it is like a bad dream. I read recently that experts are saying that we don't need to come in for the scope but every 10 years now so why was I told every 12 to 18 months? I think this is a way for doctors to make money. My rant is over. The disease itself can be really bad but when you are able to find a medicine that controls it then really not to bad. Hang in there you will find something that works and it will go into remission.
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    • Posted

      Well said Craig, yes it's true, every ten years unless your having problems, I am due one now but they have to put a camera down my throat first as I am throwing up blood,due to either my hiatus hernia or long term use of certain medication, I had remission and that was when I fell pregnant with my daily her and for about 7 years, but it's reared its ugly head again
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    • Posted

      Me as well, was supposed to go in for the upper due to pain in my esophagus and trouble swallowing. I hate these tests so much I can't seem to go in any more. I just want to be left alone and try to live a normal life. It is difficult at times as the symptoms can get so bad that you don't have a choice. When I had my first flare I waited a long time because I knew that if I went in they were going to scope me. I did the wrong thing and waited until I was so weak from blood loss that I had a hard time driving myself to the hospital. All because of fear. The doctors need to realize that most people really don't like invasive tests and will try to avoid them. There needs to be a better way. Are you taking Prednisone? This can eat up your stomach. I have been on it now for 8 years.
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    • Posted

      No, I take pentasa, and also refused steroids, the tablets that they feel are effecting me are citilopram, as been on them for ten years of more, pain is awful with crohns, so pentasa and peppermint tea seem to help a lot, but at the moment I am not allowed any tablets apart from my thyroid tablets
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    • Posted

      I have never heard of citilopram. I too am on thyroid meds but stopped taking them as my thyroid has returned to normal now that my Testosterone level has gone up due to hormone replacment therapy. I am in a lot of pain as well and take a strong opiod pain med for it. Prednisone was the only medicine my body didn't reject, so unfortunatly I am stuck with it. I was on asacol and it made me worse then they put me on Imuran and my immune system went on the attack. It gave me a high fever and my white blood cells attacked everything they could. My joints hurt so bad I couldn't walk so to the hospital I went thanks to that drug. I hope you find the right medicine for you. When you do things will improve.
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    • Posted

      What did Asacol do that wasn't too good for you?  I ask because my 21 year old daughter has Crohn's too, and she is on Asacol and Azathioprine.  Just wondering what side effects it gave you?
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    • Posted

      It made no difference with my flare ups, I was in and out of hospital like there was a revolving door at the time, and I think I was on 1600mg a day, pentasa seems to work pretty cool for me now ☺️
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    • Posted

      That is it I think that Asacol only works for some people and for maybe milder disease cases. My entire colon is diseased and was told I should have it removed. I still have my colon and it would seem like all is well, but I know how this disease is and most likely it will flare again. 
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