Mental weight meltdown!!! HELP

[Kirstyb88]

Sorry to everyone for my meltdown but I have never been so big (so will say I’m not) I’m 32 with 3 children I’ve averaged weight over the past 5-10 year no more than 10 stone even when pregnant now I’ve been diagnosed after having my third child with Colitis- Proctitis. The IBD nurse has told me that my issue is completely nothing related to my diet and I should just carry on as I am (I eat reasonably good) we have now agreed to disagree with that as I have kept a food diary and have found the majority of what I used to eat on a regular basis (wholemeal foods grains fruits salads) basically bloat me and go straight through me I suffer with stomach aches and as soon as I feel I need to go I have to otherwise I will basically have the biggest projectile poo anyone has ever seen. I have next to no control of being able to hold it in. (All my money is now spent on sanitary products and big pants!!) I just want to know as I’m early diagnosed is there anyone out there that has been through this and it has turned out that there was more to it than what they have said?? I don’t like to bother the nurses but I do feel I could ring them every day to say something or to tell them I’m having a bad day I WILL NOT leave my house. Is there anyone we are able to just have a rant with and talk about similar issues. (My partner is supportive but we both get grossed out talking about it!!) 🤦🏻‍♀️

[bantam12]

A "healthy diet" often doesn't suit those of us with UC problems !! I can't eat grains or seeds, wholemeal, veg, fruit, spicy stuff, coffee and the list goes on, you just have to find foods that don't cause issues and stick to them, for me that's white bread, pasta, rice and everything else that's white and bland 🤷‍♀️ I'm shortly to have my gallbladder removed so that's going to cause even more problems, think I will be surviving on water and clear soup !!

[Kirstyb88 in reply to bantam12]

Awwww poor you. Yes I have found I am having to eat white foods bulky foods my partner calls them and he says that’s probably why I’ve put on weight. I eat a lot of rice and pasta I exercise to aswell as having 3 children at home. I just feel it seems to be one thing after another. I’ve been on meds now since March and have seen no change. They have changed my meds every 3 weeks as there has been no change. Now the only change is that I see more blood than mucus. Every time I go (upto 10 times a day if not more). I feel the meds are trial and error which they are till they get something right and having them being changed a lot I feel there possibly could be more wrong with me than what they have said.....

[HJ10HMO]

Hi Kirsty, you mention meds, have they got you on steroids as this will cause weight gain. Also a lot of the meds are to slow down the rate that food goes through you for obvious reasons so it will take your body a while to adjust. Do not despair once the IBD team find the right combination for you things will level out xx

[Kirstyb88 in reply to HJ10HMO]

Yes steroids aswell as Pentasa and the other one that starts with B. I understand steroid will make me put on weight I’m on my last week of a six week course so now down to 1aday. I guess the past 6 weeks is when I’ve noticed the bigger weight gain. Thank you.

[saj12]

From my own experience of diagnosis 2 years ago, there is initial euphoria as it seems steroids are working... but once off and into maintenance treatment, trouble and difficulty is never far.

The IBD teams do stick to the script that food has little impact, even the dietary teams are on the same page... it’s really down to you to make a judgement on what works for you, unless you are lucky there is no real quick fix so I would say calm down, take a breath and take each day as it comes. I have had continual bleeding on off for the past 2 years, still on a path to see what works.

Unfortunately you will find family and friends don’t really like talking about illness and the IBD problems you face, the IBD nurses are fantastic but contacting every day won’t help... the timescales to see if any meds work is months not weeks. I did find it helped to see be referred to the psychology dept, helped with managing the mental fallout and trauma dealing with symptoms and life.

Best of luck.

[ellj]

The very best thing you can do is keep a food diary, write down everything you eat and drink plus how good or bad your symptoms are. You can then see what suits you and what to avoid.

Often gluten and dairy are found to be a problem, sometimes lacto free dairy can be ok.

Best of luck

Ellie