Incontinence/diarrhoea are getting me down

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Lizzie

Joined
Jun 7, 2011
Messages
435
Location
East Midlands
I've had bad incontinence problems for about six months now and liquid diarrhoea for five weeks and it's getting me down so badly. I'm on Prednisolone enemas and they've helped a bit but I'm sixteen days in and still defecating ten times a day. I went out today with friends and messed myself three times in company. If it weren't for the pads I found on the internet I wouldn't even be able to leave the house, at least they buy me ten minutes to get to the toilet and clean up.

I just feel so very low. I've had blood and stool tests recently but not dared ring for the results. I'm seeing my GI consultant next week and I'm so scared I'll be told it's Crohns. I would just like someone to tell me there is hope and I'm not going to be like this till I die.
 
Lizzie, there is hope, and you most definitely won't be like this till you die.
Once you have a diagnosis, then there's lots of roads to explore. It's the undiagnosed part that's the worst.
No good shutting your eyes to it, if it's crohns then it's crohns, better to know and deal with it. There are many drugs which will get it under control and you won't have to suffer the embarrassment of accidents. Really. Honestly.
Bunty x
 
Thank you Bunty, I so hope you're right but I feel very pessimistic. My diagnosis has been proctitis, then ulcerative colitis, then back to proctitis again, but I feel sure the problems I'm having now are caused by something much more serious - I went to the toilet a hundred times a day at the start of the prednisolone and I am honestly telling the truth there, not exaggerating. My dad had awful Crohns, he had an ileostomy but still had to live on mashed potato because the disease was everywhere, and I have been suspecting Crohns for a year or two, especially since everything has gone haywire. My dad suffered terribly in his last ten years of life and I am dwelling such a lot on what happened to him. He was probably at the worst end of the Crohns spectrum and it makes me so scared to feel that I am taking after him. You're right that I shouldn't close my eyes to it but I am absolutely terrified.
 
Don't lose heart. :ghug:
There are a lot of new medications out now, and once you find something that works for you, your life will change dramatically. Have you tried keeping a food journal to see if there are foods you should avoid? Let us know what your GI says.
 
I think it would be more a matter of keeping a food journal to see if any foods actually agree with me - I'm getting pain and diarrhoea with everything I eat or drink at the moment. I've always been so anti-medication, this is the first time I've been forced to accept steroids, so the thought of taking even more drugs fills me with gloom. I just want to be normal again. Sorry to be so miserable but the situation is getting me down so badly.
 
I hear ya, it can be sooooo damned disheartening. It feels like the **** won't stop, pardon the pun. Breathe, really, just breathe, deep cleansing breaths. It helps to calm the emotions. I found a meal replacement called Revitalx that I take when I'm flaring that bad. I've also been known to cook the life out of veggies, and just drink the water. (add salt, it's not fabulous) One second, one minute, one day at a time- your Dad's story is not your story. It will get better.
 
Thanks for the advice, Dunbar. I'll look into Revitalx (if it can be bought in the UK). The prednisolone is helping a bit, reducing the amount of pain and the number of bowel movements but I'm still not in a great state. I saw the GI consultant yesterday and she confirmed what I've felt certain of for a couple of years, despite her denials, that the disease is in the colon and not just the rectum, but she needs to do more tests to see exactly what is going on. So I'm having a CT scan next. I feel in limbo, I was hoping for a proper diagnosis after all this waiting and suffering, and am desperate for some medication that will get things properly under control. I got very upset at the hospital and the doctor got quite cross with me, which made me worse. So I'm not doing very well so far! You're right, take things a day at a time, but it's so hard when I have always been a very pessimistic person, even when my health was fine. I should stop dwelling on my poor dad, too.
 
I'm new to all this medication, only used Pentasa and Salofalk previously. I've not heard of Balsalazide. So far the Pred isn't causing too many side-effects, maybe slight headache and a feeling of raised blood pressure but nothing too bad - but it's still early days, I am on week four of the stuff.
 
That's worrying, I have two brothers with diabetes and my dad got it too - in fact he died due to diabetic ketoacidosis, not the actual Crohns. I wonder how long you need to be on it before it becomes a risk?
 
I've been on pred since 1st July, tapering down from 40mg to 5mg, then having to go back up to 40mg on 1st September. This is the dose I've been on continually since then and will continue on until at least 9th October when I have my GI appointment.
The last two weeks I've had a very dry mouth which turned into oral thrush. When I saw my GP about it she asked for a urine sample to dip, and I have a fasting blood test tomorrow. It's looking likely that I've developed type 2 diabetes. We have no family history of type 2 but my youngest son developed type 1 when he was ten.
Definitely something to keep an eye on if you're on a pretty high dose for a fairly long time.
Just to add, I've been on pentasa, Balsalazide and Aza, the first two did absolutely nothing, I was taken off Aza due to high liver enzymes. I hoping my GI will have another route for me to try when I see him on 9th.
Bunty x
 
If youre worried it really is a matter of a simple blood test, your doctor shouldnt have a problem with ordering one especially as you have a family history
xx
 
Hi Lizzie,
I understand your situation, I was in the same a few weeks ago. Some food changes made a great difference for me, so look up on the forum or elsewhere, I'm sure you can find the food that you tolerate and that alleviates the pain.
I'm still on prednisone, tapering off rfom 40 mg, currently at 5 mg. In a week, I should be without any medication, fingers crossed.
 
jacques.debouaille said:
Hi Lizzie,
I understand your situation, I was in the same a few weeks ago. Some food changes made a great difference for me, so look up on the forum or elsewhere, I'm sure you can find the food that you tolerate and that alleviates the pain.
I'm still on prednisone, tapering off rfom 40 mg, currently at 5 mg. In a week, I should be without any medication, fingers crossed.
Click to expand...

Hope the taper solves the problem JD.
 

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