I’m pleased to be able to share my IBS-C story. I’ve read each and every one of yours and empathise with them all. Here’s mine.
I’ve always been somewhat prone to constipation, but it only became a major issue in May 2018. I suddenly developed constipation which lasted for a few days, so I contacted my regular GP for an appointment, but she was on leave. I went to another doctor at a different clinic, which I only went to occasionally. This doctor told me not to let myself get constipated; not helpful and victim blaming. She did, however put in a referral for me to have a colonoscopy. When my usual GP returned I went to her and she ordered tests; a CT scan, X-ray and Ultrasound. The outcome was that I was diagnosed with an ovarian cyst known as a Terratoma. These can be cancerous, so I was given a special blood test to check whether this was the case. It wasn’t. Had it been so, I would have had the surgery that discovered it was not any kind of cyst, but a first stage bowel cancer about 4cm in size. However, that wouldn’t happen until November 2018.
Meanwhile, I continued to suffer from constipation and nausea, to the extent that my appetite decreased and I began losing weight quite quickly.
I finally had my first Colonoscopy in October 2018, which surprisingly, given what we know now, was normal. I continued to suffer pain, nausea and wasn’t able to sit for long periods of time. I could actually feel this ‘cyst’ inside me. I felt it was growing and as a result, I spent the next few months lying down, feeling pain, nausea and not eating much. I forced myself to do some walking around our back garden for about 15 minutes each day, as recommended by my doctor. I had yet another X-ray and Ultrasound, which showed faecal loading as a result of my body not ridding itself of enough waste. I was becoming anxious and depressed, both conditions which I also suffer from.
Things at last came to a head after my operation to remove the so called cyst. The surgeon found not a cyst, but a large mass around the bowel. He was an ob/gyn surgeon and was unable to remove the mass, which he felt he was not qualified to do. He did however, perform a partial hysterectomy and took out my ovaries and tubes, though not the uterus ( not sure why, as I was 67 and had no use for it). I was referred to a colo-rectal surgeon at another of our main city hospitals.
By now, I knew I didn’t have a cyst, but I still had this large mass, which was quite likely malignant. I became even more anxious.
At last, after a miserable month and a half, including an equally dismal Christmas, I had the tumour removed in the new year of 2019 in an operation known as a Right Hemicolectomy. About a third of the large colon is removed and the rest stitched to the small intestine. The surgery took about five hours and fortunately could be done laparascopically. The surgeon, a top colo-rectal consultant in one of our major hospitals, was excellent and I trust him completely. He’s also since done two more of my check up colonoscopies. I was fortunate that I didn’t have to have a colostomy bag fitted outside my abdomen, though I fully expected that it might be necessary. The tumour was referred to as a ‘mucinous carcinoma’. Just the name is horrible.
Recovery from all this took a long time and I had a severe anxiety/depressive reaction.
My GP thinks the IBS, which I still have, began before the removal of the tumour. Whether or not it was exacerbated by the surgeries, is hard to say, but it is something that I’ve come to terms with and am learning to live with it. I have lower abdominal pain, quite strong at times, excess gas and sensitivity to gluten and lactose products. I try to follow a low fodmap diet as much as possible, but at times I branch out (Christmas and special occasions) and eat other food. Yes, I do sometimes get a stomach ache, but I also have to live my life and have some pleasures.
I’m forever grateful that they were able to finally remove the tumour, but would like to know who mis-diagnosed it in the first place and how? I’ll probably never know and mostly it doesn’t matter. I’m tumour free, it hasn’t returned and for the most part I’m in good health, with excellent doctors.
Last, but not least, here are some strategies/treatments I apply when I’m feeling IBS-y. We’re all different, but some of these may help some of you.
Lying on my bed, with a heat pack on my abdomen, slow breathing and usually reading a book I love to read. I’m also a writer and derive great joy from writing, both fiction and non-fiction.
Drinking a cup of tea; ginger and lemon is very pleasant, and may help those of you who suffer nausea. I can also have de-caf coffee, which doesn’t irritate my tum.
I rarely get nauseated, but if I do, then Ginger tablets help.
Going for a half hour walk, or if the weather isn’t good, a half hour of daggy dancing in my lounge to a 70s music station on the telly. Sometimes I need to give myself a bit of a push to exercise, but it is important.
Buscopan helps with strong pain.
My laxatives; Lactulose, Coloxyl (not the senna kind) and Magnesium Pellegrino, which is very good.
A healthy low Fodmap diet ( most of the time) and lots of water.
I’m also very fortunate in having a wonderful supportive family.
Lastly, I’d like to be able to give all of you who have related your stories, a comforting hug, so consider yourself hugged and prayed for.