Just wish this torture would end :(

Posted , 7 users are following.

I am 46 years old & had suffered for many years with cramps, spasms, pain, mucus, bleeding, bloating etc...however my GP insisted this was IBS with a 'just get on with it' attitude.  6 years ago, I collapsed in the street with a really bad flare & was admitted to hospital for 3 weeks.  I was finally diagnosed with UC. Great! Now I can be treated and all will be ok. Not so simple is it.  I can deal with the pain (just about), and the contant dashes to the toilet, however I just cannot cope any longer with the smell that I emit.  It is so embarrasing and degrading.  I have a good job which I really love, but feel like everyone in the office is sniggering at me.  I have to hold meetings and try to book a meeting room with as many open windows as possible just to have some clean air flowing.  I want to continue working, but feel like giving my job up and hiding at home.  Least I won't have to suffer the humiliation of knowing I am the smelly one.  I really, really cannot cope any more and spend so many hours crying.  My husband says he understands, but how can he. cry cry cry cry

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6 Replies

  • Posted

    See Consultant and have your meds changed and regulated Asap! There is help! Don't give up. I'm 5 years with it and I try everything! Also diet is so important! Good luck!

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  • Posted

    I won't put a link here else my reply will go into moderation but do read the leaflet that Crohns and Colitis UK have published called Managing Bloating and Wind. It may be that you need to look at your diet. The leaflet has lots of advice. Good luck.

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  • Posted

    I'll just back what everyone else has said. Talk to your doctor and look into diet. Unfortunately the moderation on this site is extremely strict so I can say exactly what I would advise googling Colitis and diet to find some ideas.

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  • Posted

    Hi, Sorry to hear about your UC, so difficult to manage. My son cut out the windy and difficult to digest veg and ate marshmallows which helped. Regularly small meals also helped, chew well and slowly.

    He had no choice but he ended up with an emergency ileostomy as his colon perforated as he was severe.He was on a reducing dose of steroids and his symptoms were very bad. I say this because it felt like the end of the world when he had a stoma. He had a year to heal and get used to much fewer symptoms. He had a reversal with a j pouch and he is doing v well, no pain, no meds and no disease. I am not suggesting it to you but it is an option that you may have no choice about at sometime. Just know that it works for some people as a way to get rid of the UC. Take care, it is hard to live with psychologicaly and physically.

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  • Posted

    hiya ,im really sorry to read about whats happenend to you,have you tried a dietitian,i havent got UC,ive got microscopic colitis and it has a similar problem with smell,ive never sat on the toilet and not been able to bear my own smell before so i know what you mean,even passing wind can be embaressing,anyway the dietitian put me on a low fodmap diet which reduces the sort of food that naturally rots and ferments in the gut causing the smells and wind,since being on the diet it has really made a difference,i still flare up but at least its not so obvious,i dont know if this will help as i have a different form of colitis but you never know,good luck and always remember that your not alone
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  • Posted

    WOW!  Thank you all for your responses.  Yesterday I had a bit of a melt down & a real 'feel sorry for me' day.  After a good nights sleep & reading all your comments I am in brighter spirits.  Thank you cjb6 for the advice re: Managing Bloating and Wind' leaflet.  I have downloaded this and have in hand ready to digest (no pun intended). I am going to book another appointment with my consultant as I don't feel that I am entirely honest with him.  I never really tell him how I feel as my husband is usually with me & I put on a brave face.  (My fault for bringing him in to the consultation).  Have looked online at the underwear mentioned in the leaflet I downloaded.  Very expensive, but am willing to try anything.  Have any of you tried these?  Right....positive head on.  Lets see how long this lasts.  Thanks you all so much smile

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