That’s how I feel!
I had an ileostomy 33 years ago for inflammatory bowel disease, possibly Chrons colitis but was always a grey area. Life with an ileostomy was good, I was fairly healthy worked full time etc . Always struggled with my weight as I have a very sweet tooth. Then life became very very difficult…..
Three years ago, aged 55, I had a hysterectomy for endometriosis. They perforated my small bowel. I now have an enterocutaneous fistula which basically is an abnormal connection from my small bowel to my skin so I now have two stoma bags. It’s a very long story through which I have been fed through my central vein (TPN), lived on fortisips, became afraid of food so lived on cake , nearly died thanks to sepsis and respiratory failure. I’m current,y watching my marriage die and my world becoming very very insular……..I must take control somehow.
There is no disease in my small bowel yet the fistula does not heal, my consultant feels nutrition is very important and has just suggested probiotics as the only thing that does seem to help the constant infections are antibiotics, which I now fear greatly having read all about the gut.
I’ve started looking in to it all and feel overwhelmed. Should I just be grateful t be still alive and forget about all the science. I can eat and drink normally thankfully as TPN is awful. But I do have to stick to grazing and a low residue diet. My diet tends to be fish, Greek yogurt, sandwiches, cereal, cake, loads of water , some wine , bananas , broccoli in small amounts . My small bowel must be working ok as I am 2 stone overweight. My bloods are ok, apart from elevated inflammatory markers and I’m slightly anaemic. Surgery has caused this fistula so repair is not an option at least not at the moment.
I lierally dont know where to start or whether to bother and would love some guidance .
Thank you all so sorry for the long post.
That’s how I feel!
Sorry to read how much you have been going through. I believe most of us in the West can improve our physical health and mental wellbeing via our diet or lifestyle choices, however small those changes seem. NO you are not a lost cause!
Did your gastroenterologist recommend any specific probiotic products or probiotic-rich foods? Can you get a referral to a registered dietician? It would be helpful to have their input on how probiotics and prebiotics can be worked into a lower residue diet, and how your diet can become better balanced and varied nutritionally.
Things to think about or to ask your gastroenterologist or dietician about include: Can you have a wider variety of oily fish and other seafood (esp. molluscs)? Iron-rich organ meats like liver? Whole eggs, other live fermented dairy (kefir/ soft ripened cheeses)? Lower sugar, antioxidant rich fruits (eg. berries/ bell peppers/ tomatoes/ avocado/ olives), IF they are blended and sieved to remove the seeds? Foods richer in ‘gentler’ soluble fibre or resistant starch (chia seeds/ cashew nuts/ oats/ barley/ potato starch) IF they are soaked to soften and/ or cooked and/ or blended first?
Then start working on your detailed food and symptom diary (p.187 + p.166-267). Once you have your baseline information, make any changes very slowly, starting with very small quantities of ‘new’ foods or supplements.