Just found out i have UC help please x

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I have suffered with diarrhea for years with very little warning whe i need the loo, i have just kind of adapted to living with it, going to the loo around 8 times a day, the urgency in needing to go and got worse of late and had an accident whilst out, so went back to doctor, he has sent me for a endoscopy last friday which was awful, it was so painfull i was crying and asking them to stop, they did take a couple of biopsy tho, they have booked me in for tuesday coming for a colonoscopy with sedation.......i am so scared!! they gave me a basic fact sheet for UC and that is it, i dont know what i should and shouldt be eating even. If anyone has any advice for me i would much appreciate it, i want my life back and not be scared to leave the house incase i have an accident. thanks in advance xx

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  • Posted

    How awful for you Nicola. I was just the same shouting stop youre hurting me, It was awful.I am not sure what I am supposed to eat . one day its diareah next day constipation.I feel quite ill as well.Let me know how you go on after your colonostamy  babz xx

     

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  • Posted

    Look at FODMAP diet for IBS symptoms and breaking the vicious cycle diet for crohns / UC diet..just Google legal list for SCD diet.very restrictive, but worth reading. In general, for people affected by diet it's wheats, sugars, milk, starch that can all cause problems.... It's different for everyone. For me cutting out all has helped a lot, but it takes planning, will power and may not be healthy long term..I'm willing to take the risk to reduce symptoms though. Take vitamins also. Diet can take months for full results so patience is a must.

    Good luck.

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  • Posted

    Just a couple of things.

    The advice on learning about mdifying your diet as for IBD is a good idea.  It seemed to help me.

    Second, I've had many colonoscopies and such and always with heavy sedation so I feel nothing and remember less.  I think it's some form of valium administrered intravenously.  Inisist that your doctor do that. The procedure should be painless!!!!!

    Good luck!

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  • Posted

    take strong probiotics, stay away from spinach asparagus, vegetables that are hard to digest or food that has a lot of fiber. Stay away from a lot of sugar.drink water eat light 6 times a day. Over eating or undereating both can make symtpoms worse. Use a heating pad for pain, vitamin c helps with bloating. Eat very bland so no Alfredo sauce no canned sauces until you start to feel better reintroduce new foods.i know this is a pain to deal with but once you understand it and know what to not eat you will be fine. You can also buy kefir yogurt it has a lot of good bacteria in it. I have had this for a few years and have no flare ups so ask me any question I may have the answer for you
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  • Posted

    Hi Nicola, I'm sorry to hear that you have just been diagnosed with Colitis & that you are so scared. Please don't be scared. The endoscopy can be painful or/ & uncomfortable especially if you are very inflammed. Did you have any slight sedation?next time ask for it. You didn't say whether you've been passing blood?  They will want to do a colonoscopy to go further up & around the colon. You must have this done to see the extent of your inflammation. You will be completely sedated! You will only become aware once you're back in the recovery ward. 

    I had endoscopy yesterday & yes it was uncomfortable as they push in air & I'm inflammed & rectum very inflammed. I've had a lot if these now & colonoscopy so I'm afraid it's just part of it. The only good part of being mainly awake is that I get to see my colon as well so know how inflammed or not it is.

    i too lost control of my bowels last Friday & now I have tena pants( never ever thought this would happen to me). It will give you peace of mind if you go out or just while your colitis is so severe- & no one need know. Also carry emergency kit in my bag andrex wipes spare pants. Bag for soiled items.

    as I say they'll want to do colonoscopy to look at ALL of the bowel for a diagnosis & treatment plan.then you'll have medication & you should start to respond to this. It's also a good idea to keep a record of time, type of poo ie diarrhea, any blood or mucus & how much I've small medium large amount. It will help you so much when you go back to the clinic & they ask you how you've been. I was surprise how much I'd been going to the loo & had underestimated to them.

    the next thing, as I found after my initial diagnosis of ulcerativel colitis in August 2013, is to get support. CrohnsColitisUk website is helpful.

    I don't know whether they don't want to overload you or worry you with information at the hospital but I found I needed to know answers to lots of questions. I didn't even get a fact sheet when I was diagnosed! 

    As far as diet do not have spicy or hi fibre while you've got inflammed colon.

    diet is not causing your condition but some things will aggravate the colon. Like have really sore throat & eating crisps.

    you Must drink plenty of water & eat healthy balanced meals. Especially if you are loosing weight. I avoid cabbage, broccoli.sprouts ( windy veg) definitely no hi fibre. Watch out for skins on fruit etc. you might wasn't to avoid curries although I craved these which was bizarre as I had a mega sweet tooth & couldnt eat spicy. I now crave spicy hot food! Taste buds completely changed. I hope some of this info has helped you. Any more questions just ask. Don't suffer in silence hopefully you have a telephone number as well for your clinic & you can phone for help. 

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    • Posted

      Hello, thanks for taking the time to reply. So much information to process! Lol I know I need to have the colonoscopy done and I'm trying not to think about it, think they said they will give me pethadin as pain relief as well as gas n air and sedation! So hopefully I will be out of it lol what is it like after? Are u in pain? I don't eat fruit never have just vegetables, I tend to eat them

      Raw but I'm getting that I shouldn't do that anymore? Have been drinking actimil drink and macrobiotic yogurts this week and having omelette for lunch, had got to the point I wasn't eating hardly anything so was starting to feel very week and ill. So I'm felling better in myself for eating little and often, I'm finding I'm not so loose either 😂 have also switched to green tea and eating Manuka honey as well, I heard that is good for inflammation? It's so nice to have people to talk to in the same place as me, I've felt so embarrassed and hidden away by it all. So thank you everyone 😁💓👏 xx

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    • Posted

      Hope the colonoscopy went well for you. I've not had one for about a year but I remember when I was first diagnosed I had 5 in 7 months which wasn't fun. I agree with 2bustagut1 about the emergency kit I have one in every handbag just in case. I have also found that the can't wait card that you can get from the Crohn's Colitis UK membership is quite helpful. People usually let you use the toilets without asking too many questions and will leave you alone long enough to clean up if you do have an accident.

      In regards to the food I found that when I'm feeling really bad white bread really helps. When I have a flare up I live on white bread and skinless roast chicken as it's all I can eat. My IBD nurse explained about the different types of fibre and how they can help it's worth looking at all of the information on Crohn's colitis UK. Also you are quite right about the raw veg I can only touch salad and raw veg when I'm having no symptoms or it sets them all off. I have found that well cooked vegetables are mostly fine. I have to stay away from peas and corn and some kinds of beans but other than that cooked veg is fine.

      I don't know if your doctor mentioned but keeping a food diary is also really useful as you can keep track of your reactions to different foods and see if there is a common trigger. It can also help you figure out what you can manage when your really bad. But you have to be careful and introduce foods one at a time and allow them to digest before you try another. It takes a while to build I've just gone into my 2nd year since I was diagnosed and I've not tried everything out again.

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  • Posted

    Just one more thing.  In case you're not aware of this, take an Immodium tablet when going out to give you an added margin of safety against diarrhea.  There are two types of fibre - soluble and insoluble.  Eat soluble and avoid insoluble fibre.  You can look up which is which.
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  • Posted

    Hi Nicola

                We definatley symphavise with you on that note please try not to worry about tuesday make sure that you get sedation for this you will find they will make it as comfortable as possible.

    If under sedation you shoud not feel much of whats going on Marie was scared at first but they soon reassure you and you will be fine.

    Please let us know how you get on, good luck

                                                  Jon and Marie 13689

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  • Posted

    Sorry to hear you're poorly and worried about the disease but it does get easier - knowing is half the battle.  My first signmoidoscopy was awful too - no sedation and cried from the pain, the colonoscopy was much better tho thanks to the sedation and you can find out how much of you is affected which impacts on the drugs they'll give you.  I started on pentasa but it didn't really do much for me, then I had a course of steroids which fortunately worked really well, although I became dependent on them and had nearly back to back courses for about a year, they tried me on immunosuppressants but I had a really bad reaction (gave me pancreatitis).  It got to the stage where I couldn't take any more steroids without risking damage and the next step was biologics - at that point I got really scared and decided to try the Specific Carbohydrate Diet (SCD) - hadn't tried it before because it sounds impossible (no grains, sugars, startches etc), but I was desperate so I gave it a go - 6 months later I'm really well, haven't had a flare up, no steroids, haven't even had a cold!  You can find info about the diet online, and if you think it's something you want to try then I'd advise getting the book 'Breaking the vicious cycle' it's really informative and some recipes in the back are really helpful, also I got a great cookbook for Christmas called Against All Grain which is packed full of delicious recipes.  There's a lot you need to make from scratch but it all freezes really well, and I can make bread, muffins, pizzas etc using nut flours or similar - for me it's been a bit of a life saver, you just have to be a bit organised.  And I can eat all fruit and veg too without having to worry about the skins or the amount of fibre I'm eating - my tummy just works normally now :-)  

    I hope you're feeling better soon x

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  • Posted

    Hi,

    Sorry to hear about your experience I went straight to colonoscopy and was out like a light so didn't feel a thing so don't worry too much about that one.

    It is a very scary experience when you are first diagnosed. I was a very active person running, weights and martial arts. I thought my life was over but while it took time I have got back to around 95% of where I was before. I can now run/sprint and I'm back in the gym I get a little more tired than before but that could also be the fact I'm closing in on the big 40 lol.

    Finding a way to de-stress is important too, find an activity that relaxes you be it Yoga, reading or going for a walk, mental health is as important as diet I find with UC.

    I will say what I always do to anyone new to this. It takes time, patience and consistancy to get better, by the time you get diagnosed a lot of damage has been done and it takes a while to get back to health even when you do evertything right so stick with it.

    Best of luck and let us know how things go.

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