Hi, I'm new here...
Hi, I am new here. This is all so new to me
I have been battling with symptoms since October 2023, starting with nausea and vomiting every single day, whether I'd eaten or not, I could be on the bus and suddenly have to get off, of about to go to bed, or on a call at work and have to dash off. I was put on anti sickness tablets and the problem moved south, to diarrhea, along with this, I've lost loads of weight, take antisickness tablets every day, wake up mid way through the night to use the bathroom (does not help the fatigue at all!!), I sleep with a hot water bottle every night to cope with the pain, there are some really comically loud grumbly rumbly sounds in my bowel and am gradually creating a list of things that cause me so much pain in my whole torso I have to roll around on the floor for hours at a time. I am in desperate need of something, and I don't know what. My family and my workplace are being amazing, but they don't fully understand. I'm having regular blood transfusions (have been chronically anemic for 13 years) and iron infusions, and take colofac, buscopan and antisickness tablets every day in order to not lose my job. Does anyone have any advice for a newly/pre-diagnosed adult while I wait for some officially help
I'm so sorry you are going through all these symptoms. I was once in a similar place and it is so lonely and exhausting. Are you in discussion with your doctor about treatment plans? For example if you will be taking a biologic drug or going for another option. I'm wondering if at least they will offer you steroids to help while a decision is made. Steroids can be so helpful for short term relief. Here is an article that goes over IBD medication: https://inflammatoryboweldisease.net/treatment/medications
I can so relate to the iron and blood transfusions. As I write to you right now I'm actually getting an iron infusion. They can be so helpful. In the meantime how is your diet looking? The body needs all the nutrients it can get and even if it is in the form of soup, it is so important to offer the body all the tools possible to be nourished.
I'm glad to hear your job and family are supportive and I know exactly what you mean when you say they don't fully understand. Unless you have the diagnosis yourself, it is hard to get it.
I think call you doctor and put pressure on coming up with a treatment plan quickly. You need medicine to help you out of this flare that is causing you pain and depletion. They need to move with urgency because you don't need to be suffering.
Do reach out if you have any questions. Happy to help in any way I can. It does get better.
Hugs,
Elizabeth (team member)Hello
Firstly I'm really sorry to hear what you're going through! It can be such a difficult stage, waiting for an official diagnosis when you also feel like your feeling worse by the day 😕
As others have already mentioned, I would definitely recommend a course of steroids from personal experience. Your doctor will know what's available and best suited for you, but even a short course of those can make a world of difference and help you feel a bit more like yourself again! They usually work pretty fast so you'd get quicker relief this way.
In terms of things you can try yourself, these are just a few things I personally found helpful pre-diagnosis or during flare ups;
Watch what you eat - avoid spicy, greasy or fatty foods, raw veg/meat and fruits or veg with skins left on them. Your body struggles to digest those and it can just cause further irritation to your intestines etc, making your bowel movements worse...
Take warm baths - this can really help to soothe your abdomen and soften stools, to try and make going to the bathroom a little less painful.
Omega 3 Tablets - you can check with your chemist or doctor if you prefer, but in one of my recent flare ups I began taking Omega 3 fish oil capsules every day, as these are supposed to help reduce inflammation, and after 2-3 weeks of sticking at it, I had noticeable results! I had a lot less cramping and pain in my abdomen.
Those are just a few things that have helped me, so may not work for everyone but definitely worth a try! Trust you'll get some answers soon and be on the mend 🤞🏼
