I need some hope - please. I am so down

[GivemeGivenchy]

Hi

Sorry - I am not sure where to turn. I have been on a waiting list to be seen for IBD since March and since then my symptoms have just got worse and worse. I bleed so much every day and get really awful pains in my stomach.

I am just not coping at all.

I am pregnant so finally saw the Gastro team 9 days ago and they had a little look with a camera and said it had got extensively worse since the camera in March. They can't see how far back it is because I need a full colonoscopy for that (which they won't do whilst I am pregnant).

They prescribed me Prednisone and an anti inflammatory granular type thing.

I am feeling worse than ever since taking them and am not seeing any improvement (they said normally a difference would be noticed in 5-7 days)

My stomach is cramping and I am crying all day and can't cope with anything.

I keep reading online all the dreadful stories surrounding Crohn's and Ulcerative Colitis and I feel bleak and terrified of what the future holds.

I want to enjoy my pregnancy but it is just being over shadowed by this. I also have a 3 year old and work full time. I am struggling with everything and miss my good health - I feel like a stranger in my own body.

I am not sure why I am posting, to hear some hope or something. I am sorry. Please someone help me.

So sorry you’re feeling like this. I’ve been there and the unknown is the worst. I was terrified of taking medication after he last lit made me so ill. But a few years later I am probably 80% symptom free - bear in mind that at my worst I couldn’t walk some days.
Remember that worrying helps nothing - just makes you feel worse. Every time you worry tell yourself that and focus on something positive about the new baby. I know it’s hard, I really do. But I hope my message helps a little and gives you a bit of hope.

Is your Consultant experienced at looking after and prescribing for pregnant women with IBD? Sounds an odd question but it's worth asking. What disease exactly do you have? Chron's or Ulcerative Colitis? If you are still having bad symptoms after 7 days I would say the steroids are not working. When are they going to review you? and did they give you a phone number for a specialist nurse? They need to keep a very close eye on you, especially as they don't even know the extent of the disease.

This sounds so hard. Does stress aggravate things for you? Is getting signed off work an option? It really sounds like you need some time for rest and self-care.

Hi there, had to post. I’ve had colitis for the past 16 years. Have had phases of constant symptoms and long periods of none at all (a 4 year period). Pregnancy hormones can flare it up and they can settle free as well. I take Octasa and really didn’t want to for a long time but after about 2 weeks of it my symptoms stopped and touch wood I’ve now been symptom free for 11 months. I also take salofalk foam enemas if things look like they are flaring and they work really well. Take spa tone iron sachets as they will help with anaemia, also put tumeric in everything and drink tumeric tea daily, good for inflammation. My specialist says that people with colitis are often less likely to be diagnosed with bowel cancer because they are screened so early and not afraid to talk to doctors about bowel changes.

In summary, things are going to be ok. When I was first diagnosed there was barely any support or info and things are so much better now. Joint the colitis and crohns society, they will send you a disability card and key so you can use any loo in shops etc.

On a final note, I am very fit and healthy, have 2 children, work out 4 times a week. It doesn’t have to hold you back. Try to reduce stress. ANd finally Steve Redgrave and Siobhan Marie O’Connor won their Olympic medals whilst dealing with colitis, we are in good company! X

Thank you so much for your replies. Honestly I have been sobbing my heart out to DP for the last hour.

I am under a specialist and I think I will call them on Monday to discuss things - I also thought the steroids might be working by now. They know I am pregnant. I am also type 1 diabetic.

Hearing some hopeful stories is so helpful - thank you. My attention span seems short at the moment so sorry for not posting your usernames as thank you s (I cant remember them).

I am stressed at work and I have step children who I am sad to say I don't want staying with us at the moment (I know they should stay and it's only every other weekend) time off isn't really an option as I need to save for maternity leave. Work wouldn't even let me be excused from a training course last week to work from home. Basically said I attend or call in sick (was capable of working from home, I just wanted to make a few personal medical calls)

I use to work out a lot and live a healthy lifestyle. Now I am scared to eat vegetables as it makes it worse. No clue what to eat half the time (I am vegetarian too)

Sorry to hear you're suffering. I was diagnosed with UC last year after a flare up with awful symptoms like you describe. I've never been in so much pain and the fatigue was terrible too. I was also put on prednisone and pentasa granules, plus b12, calcium/vitamin d and iron. Luckily that did the job and I'm now in remission.

It sounds like the steroids aren't working yet, so like others have said, you need to discuss this with your consultant and maybe try some other treatments or a higher dose.
Food wise, I found that bland carbs worked best for me when I was flaring. I'm back to eating normally now. Hope you start feeling a bit better soon.

When I’m fine I can eat absolutely anything but when flaring it seems everything can make it worse. As a general guide avoid raw veg for the time being and eat lots of nourishing, well cooked stews, keep eating well cooked meat if you’re not veggie as you need iron, add lentils and as much veg as you can, cook everything well, stews are great, google bone broth, this is anti inflammatory and great for colitis also turmeric as I mentioned ans sweet potatoes are well tolerated. Don’t worry about avoiding anything in particular but just avoid salads and raw veg and try and eat as well as you can. Try not to stress as honestly that is one of the worst culprits.

How are you feeling GivemeGivenchy?

So sorry your work are dicks. I've only got IBS, which I know is nothing like UC, but it helps me to avoid insoluble fibre (any kind of husks or skins). I can eat these if I process them, for example in soups. Also I don't eat onions and few brassicas.

Have you noticed any food-based triggers? Would the FODMAP diet be of any use? So sorry if my recommendations are off the mark here. I know that it's more serious than simply avoiding foods but I wonder if it might give some slight relief.

I also got a spray multivitamin as I found I was low in B vitamins (through malabsorption) when my IBS was at its worst.

I have had UC now for about 13 years, i think one of the best things you can do is to try and learn to 'listen' to what your body is telling you.

eat what you really fancy, i have noticed that at the worst of a flare i really really want a chinese takeaway, sounds totally mad but i think it must be the salt my body is craving

sleep when your body says sleep, im sure it a time when we heal

i take vitamin d and c, turmeric and actimel every day

i find lack of exercise is a BAD thing, i know it can be soo hard to exercise when you are so tired but walking always seems to help me

try and treat yourself holisticly i find that a bad flare can cause quite severe depression, watch out for that and get help from the gp if you feel it setting in.

i find that during a bad flare i feel really dirty and just sort of unclean, very silly really cos im not!, however, i make extra time for myself, make sure i feel good in my clothes, always have my make-up on, sounds like hard work when feeling so bloody awful, it just helps morale!

finally, dont be fobbed off, if you feel you need to see a specialist more often, make a fuss!

good luck with the baby and try to remember that you can and will get better