How Do We Advocate for Others? 

I have always been the go to person, someone within my extended friend group gets diagnosed with IBD or has some gastrointestinal issues and I get a flurry of messages for advice or what to do next. 

Now I can always give advice, however no-one should ever take what I say as gospel and I will always approach with caution and advise on ways to ease things or a particular diet or advise that dietary restrictions may help.

Advocating for others

The last six months have been crazy, between my nan being diagnosed with breast cancer and having a double masectomy and my little brother Haribo suffering with pains, gastrointestinal issues alongside having myself guide him pre and post diagnosis. 

I haven’t been as active in my own advocacy as life has just got in the way between work and trying to complete my diploma and 7 exams in the space of 12 months.. I have not been as attentive to my blogging endeavours. 

After speaking with Haribo (yep, that’s my brothers pet name), he has given his big sister approval to write his current journey as he has also now been diagnosed with Crohn’s disease. We always have this caring is sharing joke, but we may have taken that to the extreme with both of us now having the same autoimmune disease. 

Pre diagnosis

Haribo has been having gastrointestinal issues for years. He has also buried his head in sand a lot. I, alongside my mum have been telling him for the last decade that he needs to be seen and get a diagnosis as to what was causing his pain and his extreme weight loss, for it to subside and for him to get over that last bout and gain back his weight and health. 

To put things into perspective my brother is a tree surgeon. He’s incredibly active, has always worked out at his at home gym and taken pride in his appearance. I have always called him a man tart and that he takes longer to get ready than most women. 

As siblings we have always been close, but seeing him suffer breaks my heart, He has said he isn’t as strong as I am and that it’s the pain that he can’t cope with. I have tried to explain that back in the early days I was also like that but I have just learned to live with it, after all I have had 19 years of practice. 

Things got worse come January and I spent the best part of a few evenings in & out of A&E with him, to be told due to Covid that I wasn’t allowed in to support him. I will admit this really annoyed me, because he looks like a healthy 31 year old male they wouldn’t look at him any further and diagnosed acid fefluc, to say I was fuming was an understatement, he was also low in mood and upset because he wasn’t sleeping, eating caused pain, not to mention one or two accidents because he just couldn’t hold it in. 

His fecal calprotectin came back borderline in February, however there was not a follow up test that should have been carried out two weeks after that initial result and his GP sent him home with omeprazole and told him to basically deal with it. 

In some unusual circumstances I am now his registered next of kin and he gave authority for me to speak with his GP and access his medical results and tests. The reason being mum and him agree I am better suited in trying to advocate for him and get him the tests and care that is needed to get him a diagnosis one way or another. 

During diagnosis

He got bad in April and I finally got hold of his GP and the surgery, had to relay 19 years of my medical history , alongside his current symptoms. Thankfully the GP was more sympathetic, ordered another fecal calprotectin test and his numbers were through the roof, his last 2 tests came back at 737 and then in the 800’s with indicated current inflammation. 

He was booked in for a colonoscopy and he had an MRI. The pain is rather severe in his lower back, the MRI picked up inflammation that is indicative of Crohn’s disease. 

I also told him he had to cut out all the rubbish he was eating and avoid fried food at all costs, if he eats a KFC that lays him up for 3 days a time… 

I loaned my sister in law some healthy cook books, alongside a long list of foods for him to avoid to try and keep things level until his IBD appointment. 

Post diagnosis

He has his second IBD appointment and colonoscopy on the 4th of July, we have come up with a game plan, we have compiled a list of all of symptoms, alongside the incontinence, the leg rashes, the boils and skin infections he suffers with as well, not to mention he also has postular psoriasis on his hands which has subsided since he quit the sugar. If I’m not allowed in the appointment with him then he’s going to ask his consultant if he can record the audio of the appointment so once he’s of a better frame of mind he can relisten to the appointment so that he understands what was said and take the next steps for medication. I have also told him to ask to be cc into all letters and summaries that typically get sent to your GP after each appointment. 

Why learn to advocate for yourself ? 

I believe it is really important to learn to advocate for yourself because like my brother I am not always going to be able to attend his appointments and hold his hand, that may sound slightly harsh, it’s not, but due to work I can’t always take the time off and he will need to learn how to navigate his new way of life and how to learn how to speak up and take control of his treatment plans and navigating life once his flare has calmed down. I also have my own hospital appointments to attend.

I will always be there on the other end of the phone or in person when he needs to ask a question or just to have a rant. My brother is stronger than he thinks he is. I have had more questions about my stoma in the last 6 months than he has ever asked before. He has asked me if that would be an option for him, I have said unless he ends up having a C-section that perforates his bowel (very unlikely), that he can possibly live for many years not requiring surgery and being able to manage his condition on meds. Obviously because Crohn’s is all the way through, I know from personal experience that my stoma helps but it does not cure me and that I still have flare ups, I have been honest about that as I don’t want him presuming that a stoma will inevitably cure him. I have also told him to stay off of Dr Google… 

Having others than can advocate for you is also an added bonus, there are times when in appointments that we don’t absorb what is being explained, as humans I think we are predominantly predisposed to take in the negative explanations and not the positive. 

A very wise person told me many years ago that I can’t wallow in my diagnosis, it is not the end of the world, it is about learning to how to navigate a new way of life and riding through, the good, the bad and the ugly. If you can’t find the positive in life then you have already admitted defeat. My brother has seen me live life for close to two decades and I have also given him that same piece of advice. 

As always

Many thanks for reading 

Louise