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STILL NOT SURE WHAT TO DO ABOUT THIS DISEASE

Posted , 8 users are following.

barbara80658
barbara80658

i WOULD LIKE TO KNOW ,DO YOU TAKE ENAMAS FOR ONE MONTH  THEN WAIT UNTIL THE BLEEDING STARTS AGAIN, THEN GO BACK ON ENAMAS?  DOCTORS DON'T SEEM TO ANSWER THAT.

 

1 like, 23 replies

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  • ann69548
    ann69548 barbara80658

    Posted

    Hello Barbara,you should be on enemas while you are bleeding then when it stops come of them,are you on steroids also?
    • barbara80658
      barbara80658 ann69548

      Posted

      Hi Ann no Iam only on enamas prednisolone. but it is a steroid.I am not on any pills.

       

    • ann69548
      ann69548 barbara80658

      Posted

      Hi the enemas alone may not be enough you may need steroids orally,have a word with your consultant 
    • barbara80658
      barbara80658 ann69548

      Posted

      I will Ann Thank you .I am seeing him on 19th of this month.Last time he put me on mezaline grauals and the next day I was in Bolton Royal with pancreitus caused by  these. for 11 days.So the next time I saw him I think he was worried it may happen again. So he said just do the enamas.x

       

  • Maryjo
    Maryjo barbara80658

    Posted

    U could try psyllium seed and psyllium husk   They have kept my bleeding under control for a year after numerous years.  
    • barbara80658
      barbara80658 Maryjo

      Posted

      Hi Mary Joe. Wonder why they deleted your post . Shall I give you my e-mail then you can send it?

       

  • susan10677
    susan10677 barbara80658

    Posted

    Hi Barbara,

    how ow long have you been diagnosed? I have been diagnosed for a few years now but my symptoms seem to be worse than ever. I have always been given the enema for when I have a flare up and agreed to take octal a tablets too as the enema alone wasn't working. These two together seemed to work for a while but now I seem to be finishing the enema then a week or two later I'm bleeding again. All the time I am taking the octasa tablets but now this doesn't seem to help. I am also worried about the long term affects of constantly taking the enemas. I seem to have developed a situation when I have wind a lot of the time which is really embarrassing!

    i have been referred to the gastroenterology department and I have an appointment on 20th of this month. I will discuss my concerns and hopefully get some good advice on long term medication and diet.

    i am constantly trying to improve my diet in the desperate hope it helps but I'm not sure what seems to be ok for my digestive system anymore. What is your diet?

    susan

    • barbara80658
      barbara80658 susan10677

      Posted

      Hi Susan.I was diagnosed in September just gone.Still new to it all.Its terrible i have loads of wind.I wil;l ask about octasa tablets . what is in them do you know? The dietition at the hospital said I could eat anything.

       

    • Maryjo
      Maryjo barbara80658

      Posted

      Hi Barbara... That comment re dietitian just caught my eye ! Could not believe it. Don't no what kind dietitian she or he is but they want to go do some i depth  research on uc . People with uc have so many food sensitivities and not everybody is the same. It's a bit of a mine field. X
    • susan10677
      susan10677 barbara80658

      Posted

      Hi Barbara,

      i I think you can eat what u want but it will have an effect on you. I was dead against going on long term mens at the start and wanted to control it with my diet. Then I struggled a bit so gave in but I still think that to an extend the drugs mask the problem. 

      I don't know what's in the octasa tablets but I did read somewhere that wind is one of the side effects.

      ill let you know what feedback I get when I go to the hospital in a couple of weeks.

      hopefully we can all get through this together 😊

    • Maryjo
      Maryjo susan10677

      Posted

      hi.. I haven't heard octasa...is that another name for pentasa....the wind is properly related to foodstuffs that ur system does not like. The bacteria in ur bowel are out in protest . Diet wise from my perspective offenders re wind can be sulfur containing foods. Eg eggs is one. U can google for others.  Sugar of all sorts is really bad news. Fruit not good either as it contains fructose.  Yogurts and yogurt type drinks usually not great . U could try making ur own yogurts . U could read up Elaine Gottschall specific carbohydrate diet...lots of useful info and how to make ur own yogurt and why. Lot those yogurt type things contain flavourings and sugars that is not good for uc symptoms. Gluten also aggravates symptoms some people.  U can buy a lot of free from stuff in large supermarkets. Alcohol not good either and also fizzy drinks.Pork can also be an aggravant for some people. Cereals I tend to avoid also. I also take digestive enzymes pre my meal which are helpful and probiotics. I take the psyllium husk in form of Lepicol and psyllium seeds available on Amazon. They contain a fair amount of butyric acid which feed Coloncytes in bowel dampening inflammation . If u type in butyric acis in relation to uc on Google u will get lot of info on it.  I have had no bleeding for a year taking both. Hope u find this helpful. X Mary Jo
    • Maryjo
      Maryjo susan10677

      Posted

      Just thinking if it is Pentasa ... had them for about 5 days last year and they near killed me with pain...horrendous cramps and wind...had to give up and back on my asacol il
    • susan10677
      susan10677 Maryjo

      Posted

      Thank you Mary Jo. My boyfriend is a coeliac and so most of the time my diet is gluten free-I've heard  about that possibly affecting uc. I also take a probiotic tablet each day. When I was first diagnosed I started to take physillium husks but didn't know if they were helping or not. I got them in tablet form from Holland and Barrett. Maybe I should start them again. On the food front the info about the wind is very useful- thank you. I shall do some reading up! I think a difficult one for me to also control is sugar intake as I generally have a sweet tooth-although I don't drink fizzy drinks often at all.

      i guess I'm just finding it really difficult to narrow down which foods are affecting me 😔

      all your advice is really appreciated though. 

      Thank you!

    • susan10677
      susan10677 Maryjo

      Posted

      hi maryjo,

      i was on asacol and then I got told it had been discontinued and they gave me octasa? I thought it was a replacement drug. I haven't heard of pentane before. I am supposed to have a mild form of uc but that was said a few years ago, and as I said I seem to be worse than ever now. I am a bit worried. I think I may request an endoscopy when I go to the hospital later this month

    • Maryjo
      Maryjo susan10677

      Posted

      It's the psyllium seed which is the more important and can only be got online . I mix 2 teaspoons of seeds to one of husk powder and let sit half hour before drinking.  Yeah I have sweet tooth also but sugar is quite destructive. Asacol is still on the market. It's pentasa....they all basically contain the same antiinflammatory ....except it can be more affective in one part of the gut to the other. X
    • Maryjo
      Maryjo barbara80658

      Posted

      Octasa asacol etc all contain mesalzine which is an anti inflammatory drug. Psyllium husk is a bulking agent for stool and the psyllium seed contains more butyric acid which is great antiinflammatory. It feeds coloncytes in bowel and in turn inflammation is settled and then there is  less or no bleeding I came across info on another forum and wish I'd discovered it years ago.it probably does not work for everyone but it's worth trying for a while to c if it is benefit. Psyllium seed is available online on very well known site . I'd been bleeding for years and within approx 4 days bleeding ceased and I have had none since. I take combination of both every day. MJ x
    • victoria68799
      victoria68799 susan10677

      Posted

      On the food front try looking out for preservatives. I found that a lot of packaged food had preservatives that have me flare ups. I don't have a problem with sugar though as I actually find it settles my stomach when I'm nauseous. Fat is a big one for me, though it seems to be specific kinds as I can eat buttery things but give me a fried egg and I'm awful.

      My IBD nurse told me to start a food diary so I found a couple of things I was fine with. In my case white bread and roast chicken then I gradually added my normal food one by one so I could see which I reacted to. It takes a while mine took me over a year but now I at least know which foods in my family's normal diet I need to avoid. I also did the same with my favourite restaurants so I can still go out with my friends and not worry. Also most restaurants are great if you tell them that you have allergies and ask what's in the meal they will usually be really helpful.

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