Will I ever be able to go out without thinking I’m going to s**t myself!

[DLGJ]

Sorry for the crude title but I’m fed up now. I was diagnosed with ulcerative colitis in December. I’d had symptoms since March 2018 and took this long to be diagnosed. Anyways I’ve had two lots of a 6 week steroid course and I’m on pentasa. Everytime I take the steroids it improves. The bleeding and mucus is still there but I’m not going to the toilet anywhere near as much and feel more confident in myself. However when I tailor down the dose and come off I’m right back to square one so I don’t think I’ve ever been in “remission” right now I can’t see my consultant because of corona so I’m on nothing but pentasa and I can’t even walk my dog or take my children out. I went off work on the sick in December, was back one week in March and then corona hit and now I’m off till June. I really want to be able to go back in June but I won’t be able to unless I get this under control. I’m sorry that this is abit of a pitty party but I can’t ever see a life of me feeling “normal” again

[SORRELHIPPO]

Have you talked to your GP, they can put you back on steroids and also email Consultants for advice, if they feel this is needed. Also I used to leave a telephone message with my Consultant's secretary, with questions I needed answered. Does your hospital Gastro Team have a Gastro Nurse you could phone?

[DLGJ]

I went private because I was getting nowhere with my drs. I even had an op in July as they put it down to hemorroids and then we’re going to remove some of my bowel after this as they said I had a prolapsed bowel which I didn’t it was all ulcerative colitis and is had two previous colonoscopies :/ Anyways when they phoned to say my appointment was cancelled at the spire because it was shutting I asked what I was suppose to do and they said ring back if it gets really bad. Is this classed as really bad? They were very vague. How many rounds of steroids can you get? I no the same thing will happen yet again when If I were to come off another dose

[watergazer in reply to DLGJ]

Really don't know what you can do regarding private medical care Any chance you can e mail the consultant or the secretary as squirrelhippo says- I was in a bad way with my ulcerative colitis and the salofalk granules prescribed and slight changes of diet have improved it enormously. I wouldn't eat until I was home at night Have you tried putting coconut oil in your diet as it helps with inflammation and soothes . I have put it in coffee, on bread and in cooking. I know someone who swears by it and is off medication now and just includes coconut oil in his diet Take care x Anita

[DLGJ in reply to watergazer]

Thank you for your reply. Can I ask what changes you made to your diet? I start the steroids and think yes this will do the trick and it never does it’s really disheartening. No I’ve never had coconut oil before but I will definitely look into it. I’ve cut out dairy, I don’t really eat greasy processed food. I’m not sure if any of that has even made any difference x

[watergazer in reply to DLGJ]

I’d have thought the drs would have given you a diet sheet with triggers in it

Everyone has different triggers so it’s best to cut out one food type at a time like you have tried dairy White flour affects my daughter and my sister couldn’t eat spicy food and anything with skin like tomatoes or apples.

Fizzy drinks, flour, spicy food, caffeine , sugary foods, beer - any of these could be a trigger also red meat.

Probiotic yoghurts are supposed to help Low sugar

Stress can be a factor too

If you try coconut oil only add 1 teaspoonful to your diet at first as again it may not help you.

Hope you get some relief from your symptoms

🌈 Anita.

[Ceres777]

Try to research how to cook kale, spinach , green peas, and celery cabbage, it will help you in your digestion. Try eating it with white rice or quinoa. dont eat the veggies raw, make sure to cook them

[Bong1968]

Is it diahorrea that you’re suffering with? If so have you tried Imodium?They do ‘melts’ which dissolve on you tongue.

These are handy to take out with you in a pocket or bag as you don’t have to take them with water. They usually work quite fast too

I had a loop ileostomy reversed and, due to bile malabsorption, had diahorrea like battery acid. I soon understood the meaning of the

phrase ‘never trust a fart’ and started to feel like I would never be able to leave the house again!

I found that having the Imodium at hand reassured me and reduced my anxiety about getting ‘caught short’. The less I worried, the more the problem subsided.

I don’t think you’re having a pity party. It’s rough feeling lousy and having unpredictable guts. One of those things that people maybe don’t appreciate how bad it can be unless they’ve been there...😶

There’s loads of different meds out there. I’ve tried most of them (Crohns diagnosed in 1987) and there will be something that works for you.

I’ll stop rambling now...

Hope you start feeling better soon! X

[DLGJ in reply to Bong1968]

Thanks for your reply! Yer diahorrea it’s just the urgency. I literally can’t fart cannot. If I did I would literally pass fluidly mucus. Vile I no. This has been got the last 2 years. I would love to be able to fart!

No I have never tried immodium but I will definitely give it a go, I definitely make myself worse with anxiety. It’s the second I’m about to leave the house and it’s constantly on my mind the whole time I am out. Which brings it on even worse.

My consultant is ringing me on Wednesday so hopefully there maybe something we can try. I no there very reluctant at the moment with corona but it’s really effecting me mentally that I can’t even take my children round the block!

[Bong1968]

Bet you never envisaged saying that you’d love to fart? 😂

I’ve just sent you a message..

[Hidden]

Please do not take Imodium without consulting with your doctor. May I ask how many mg of steroids you have been put on with the Pentasa? Is your UC considered mild, moderate or severe? Obviously your current drug therapy is not working for you. If your most bothersome and stubborn symptom is urgency and not able to hold the stool when farting, I think you should ask you doctor on Wednesday if he can add some steroid (hydrocortisone) enemas or some suppository which can help more directly than the pills to control symptoms in the rectum such as the ones you have. If you go "only" 3-4 per day and the stool is too loose and there is no blood in them, you can perhaps try some Benefiber which will bulkand soften your stools by absorbing the water that your colon currently can not absorb due to the inflammation. Ask you doctor about adding Benefiber. I have good experience with this. Just 2 tsp per day can help. Basically you are adding a soluble fiber that will not upset your colon the way same amount of this fiber would if digested as part of a food source. Good luck to you. Please do not use Imodium.

[DLGJ]

Just a little update. I spoke to my consultant today and I’m going on an 8 week steroid dose and then immuneopressents. Does anyone have any experience with being on these? The list of risks sounded terrifying and I don’t want to make the decision lightly

[mondlee6248 in reply to DLGJ]

What will the risk be, did your consultant tell you, don’t mind letting us know

[DLGJ in reply to mondlee6248]

Increased risk of catching a life threatening illness and increased risk of cancer

[Eixor57]

With lots of hope and prayer the Inflectra infusions began to work for me after 2 weeks. But I am also on The Specific Carbohydrate diet, and I hope in the Lord daily. After 6 months my rotten looking colon is perfect now! Doc even mentioned the word “miracle”. I joined the FB group for this diet and it helps to have this kind of support. If you really want to find normalcy again, and you are desperate, try this diet and hope and pray. Pecanbread.com is a good starting point and buy the book Breaking The Vicious Cycle: IntestinalHealth Through Diet.