proctitis - wouldn't wish it on an enemy

John you have my sympathy I have colitis and been in flare up since January. Sometimrs its every 15 mins with just small bits of poo. This can go on for hours. The pain makes me want to punch myself in the head.

I do not know why but I have found that drinking plenty of liquids helps. I some times have to pee every 30 mins. I drink until my pee is clear and then slow up.

Obviously if you have diarrhoea then extra water is needed. I have found its a lot more than I thought.

Also keep positive.

I am surprised that after 5 years they have reversed it. I am no expert though.

Go back and explain to your GP.

I know this sounds disgusting. I have had to poo in my nappy so that I get a good nights sleep.

Sleep food and exercise help. Housework will do for exercise.

Avoid high fibre and eat meat for protein. Mince ideal. Scrambled eggs.

Tea counts as a liquid. No booze. Soups good. Ice lollies for variety. Drinking chocolate Coffee Milk Shakes.

At the moment I have discomfort only but its trying to turn into pain so I am drinking a weak cordial black current and taking oral morphine.

Also my colitis is in my left hand side. I have found that lying on my left side is better.

I have a cot with a special water proof mattress in my front room and a wet room and toilet just opposite.

Colistis is a individualistic disease so tje above may not help.

Kind regards

Bob.

Dear John,

How dreadful for you to be suffering like this, and after the operation to remove your colon. My deepest sympathies are with you, but I know all too well that that doesn't help you in the slightest.

I can only hope that once you get the steroid enemas that you are able to get the foam to stay inside you. I was given asacol foam enema when I first developed UC and it just wouldn't stay inside, and I was given the drug in tablet form.  

All I can suggest is that you push and push and push your GP to get you referred back to a top gastroenterologist and plead your case; what you are enduring is unacceptable. Consider contacting your MP too; that can often work wonders if you feel you're being given the run-around.

I'm so sorry I cannot help you further.

I send you my very best wishes for a speedy entry into remission.

Peter

 

Hi John

I know exactly How you feel. I had total coecotomy 15 years ago nd am in a terrible state too. I had a great GP who wrote to my surgeon , I am seeing him in 3 weeks. Like you I had hoped that the colcon removal would make things better but have really struggled with a pouch. Its a big step to think about going back to an ileostomy but for me I can not carry on any longer and feel that a stoma would be the best option. Saying that, you have to be sure that it what you really want and convince your GP to get that refereal. You should make a plan and write everything that you want to say, how it is affecting your quality of life, relationships, sleep, I could go on. If it is what you really want then dont stop until you get it. A stoma is no bed of roses but I know I will not have pain, I will not fear incontinence I will not experiance the most terrible urgency and the skin around my bottom will recover. Its all very sore down there. Do some research, get a close firend to help. Do you have someone you can talk too. Perhaps Anti biotics could help you this time, think carefully about your options. Write it all down, no one should live like this. If your GP wont refer see another or contact the Stoma nurses at you local hospital. Be strong JOhn. I hope you get the steroids this morning and that they ease your pain. You are right, I wuldnt wish it on an enemy either. Good luck. x