Embarrassing illnesses

sharondt

I just want to say that I had another near miss at the weekend,we went away and I 'needed to go' there was as usual a queue in the ladies,fear of embarassing myself took over and I pushed everyone aside and barged to the front jumping into the first empty loo,the shouts and remarks had me in tears,but when I came out with tears rolling down my cheeks,people apologised,it then turned into a discussion on what Crohn's is all about and how badly it can affect someones life! I hope there are now a few more understanding people around the rest of the weekend was spent high as a kite on codeine [/QUOTE]

I've never made remarks but then id never really thought why people have to queue jump until i read your post- ive just assumed they must have been desparate, but normal kind of desparate iYKWIM. It must be a horrible illness. I, for one, will be more understanding now. I had a nearmiss recently too - a different kind - the red monthly kind!:o Not all illness i know, but when it starts to interfere with your life it kind of takes over. I posted on the Mirena Coil thread earlier today. You have my sympathy livinginhope and wish you well.

mollybilly_2

Hi Annieh, ive just joined about 2 mins ago, was browsing through, looking for beauty tips actually, when i came across your thread. Well, ive got crohns disease, which is similar to what youve got. Ive had it for 20 odd years now. Its been well embarrassing over the years, i never used to tell anyone my problem, but now i dont mind so much. Are you working at the moment, and how are you coping?

Smashing_Blouse

I suffer with UC and IBS . My UC has been in remission since 2000 (diagnosed in 1992) but get regular IBS.

I am also a member of NACC, joined on diagnosis, and find them extremely helpful with their advice and information. It also helps to know that others are going through what you are.

livinginhope

Smashing_Blouse wrote: »

I suffer with UC and IBS . My UC has been in remission since 2000 (diagnosed in 1992) but get regular IBS.

I am also a member of NACC, joined on diagnosis, and find them extremely helpful with their advice and information. It also helps to know that others are going through what you are.

It's nice,well not nice really to know that someone else has the 2 problems together,I have been told that I have IBS as well as Crohn's,the problem is when the Crohn's is starting to flare up,you assume it's the IBS and try to ignore it,then it gets worse and you end up being rushed to hospital with an emergency blockage,you then worry about telling the consultant about every pain and niggle in case it's just the IBS and you get told off for not telling them when it turns out to be Crohn's! you can't win :rolleyes:
I joined the NACC 5 years ago,I was given free membership due to not having enough money to pay,I haven't renewed the membership as I am embarassed to tell them I still can't afford it the newsletters were always very informative and I learnt an awful lot about the disease,I would recommend anyone newly diagnosed to join
One thing I would love to see happen is free prescriptions for UC and Crohn's,the amount of drugs dished out is unbelievable,they always try one then another and another,the disease is vey debilitating and many cannot work full time,disiblity benefit is vey hard to get so qualifying for free prsecriptions is a no no,I have been known to stop or ration my steroids and pain killlers for fear of not having enough money to pay for another prescription.
LIH

Westywoodpecker

livinginhope wrote: »

One thing I would love to see happen is free prescriptions for UC and Crohn's,the amount of drugs dished out is unbelievable,they always try one then another and another,the disease is vey debilitating and many cannot work full time,disiblity benefit is vey hard to get so qualifying for free prsecriptions is a no no,I have been known to stop or ration my steroids and pain killlers for fear of not having enough money to pay for another prescription.
LIH

As a stoma nurse I couldn't agree more to the above comment. It's criminal to read of some one stopping their treatment for fear of not having the funds, I'm so sorry

bigtel_2

I have Crohn's. Got diagnosed when I was 16 so had it nine years. It started with pains when I was younger and being sick in the mornings with an acid taste in my mouth when I woke up and when they put the camera down me they found slight inflamation in places.

At once stage they wanted to remove a bit of my intestine but they cut me open and said it was fine so just took my appendix out and left a big scar instead. I had all the medication and it seemed to control it. Then for some reason, think I just got annoyed at taking all the tablets everyday I stopped taking them.

I was ok for months and months then had a bad spell and collapsed one day. I had an upper GI bleed and had lost nine units of blood that day. I ended up in Preston Hospital for two weeks and my consultant said ok you can go your better now. I collapsed the next day again as I was still bleeding. I was in for another two weeks and they still wouldn't tell me much which got me quite annoyed then they explained they were waiting for the medication to kick in otherwise it could be a major op. If they told me this previously I would of been prepared to to stay in for a year if it meant not having surgery again but the consulant isn't very good to be honest and I was still mad he had sent me home while I was still bleeding.

I asked could I get moved to Chorley Hospital as I had heard there was a better consulant there would dealt with Crohns and in the end I got moved and fixed within a week by injecting some adrenaline into me and it found the bleed and closed it

Still go for check up's every six months and take the medication but I think a lot of the problems were caused by the stress I put myself under thinking about it all the time. I loved spicy foods, biscuits and going out drinking and they doctors said I would have to stop all this so I cut back. Now I do want I want go out when I want and eat what I want. I told my GP about this saying it might sound selfish but I just say to myself 'I'm normal and everythings ok' and it works.

I told him I used to wake up and if I have a pain or even if I didn't I would still think of the pain. He said what do you do now then? I said well to be honest the first thing I think about every morning is boobies, cause they make me happy.

So I still take the Azathoprine and Omeprazole tablets now and everything seems to be ok apart from not being able to put on weight but that doesn't really bother me and the way I see it at the minute is I'm living a normal life

Westywoodpecker

Would love to know more, including names as I'm in your area !! (maybe via pm )

mollybilly_2

I'd like to know if any of you also suffer with joint pain and stiffness. My crohns is under control at the mo, and has been for a good while, but im off work at present with really bad pain and stiffness in my joints. I feel really tired and depressed all the time, not sleeping, GP's tried a couple of different anti inflammatories, but nothing has worked yet. Fed up cos ive been working for last 4 years, no real probs with the crohns, and now ive ben off sick for the last month and no better.

livinginhope

Hi molly,yes I have AS and arthritis as a result of the Crohn's,the back pain is very intense and somedays I just cannot get out of bed or walk.I have been admitted 3 or 4 times with back pain,before I finally had a scan for the Crohn's and they saw the problems with the back at the same time.I had to give up work a year ago due to the joint problems,but STILL cannot claim any form of benefit,makes me soooo angry! you work all your life,pay your NI and when you need help,it just isn't there.
I have been given Diclofenac for the back pain,but find my Solpadol tablets work better,but when it's really bad only Morphine will do.

JoleneM

Hello, I have ulcerative colitis, but it may be crohns now, doctors cannot make up their minds.

Had an acute attack of colitis when i was 16 yrs old, very nearly died, they had to perform emergency operation on me. Removed my large intestine and bowel and gave me an ileostomy.

Then when I was 19yrs old they removed the ileostomy and gave me an internmal pouch.

About 3 years ago I became very ill with a peri-anal abscess and fistulas, thats when they thought I might have developed crohns, still no answer.

I am 28 this year.