I wanted to know what it actually meant for me to not have a large bowel. What system functions would change? What don’t I absorb now? Does this really mean that I am cured of the manifestations of ulcerative colitis?
I thought having a total colectomy would mean that I don’t need to take medications anymore, this to some degree is true, I take meds but not the hardcore meds I took before surgery. The azathioprine was the biggest relief to come off as this was a dangerous pill that could cause more problems than the ulcerative colitis if not monitored regularly. You could get liver damage, cancer and blood issues, I needed monthly blood work that often ended up with me having to reduce the dose. Steroids are another bad boy of the IBD world ( not the steroids used for muscle building I might add, Arnie I was not). This pill used to cause ” moon face”. In other words you would look like Hammy the hamster for months on end. I have found a picture of me from the year dot, with a moon face. Not very clear I am afraid, it was a proper camera or nothing in those days.
Now I am on Loperamide ( imodium) as my digestion is much quicker from mouth to stoma and this helps to thicken the output. Originally I was on eight a day, but as time has gone by I manage to control things with my food intake, and am down to two a day. Salt is absorbed by the large bowel so I don’t need to cut down on that at all, in fact I can use this to my advantage if I fancy scoffing salty crisps, ” But I need it now I don’t absorb it”
Annoyingly I have borderline iron deficiency, so I am on iron tablets, unfortunately this means my output after I have taken them in the morning, is black, and doesn’t seem to like being flushed away.
I have extremely low vitamin D which is possibly because I had a year of ill health and being in bed mostly, then surgery and in hospital for 3 months, then recovery. I have to take a high supplement of two capsules once a week for a month, then more bloods to see how it has improved. I did hear something about Vitamin D being absorbed from the skin through to the end of the small bowel, not sure how true this is but it could explain why many of my fellow ostomates are vitamin D deficient too.
The large bowel absorbs water from foods back into the body, which means I need to drink plenty throughout the day or I could become dehydrated very easily. This is a continual fight because it is difficult to drink large amounts all day long, especially if you are at work, but I am managing it well so far.
I can if I am not careful, get blockages of the stoma output because some foods are fibrous and clog together to prevent things passing through the stoma. Luckily I haven’t felt the full force of a blockage, just some mini ones where my output is like water and never ending but eventually recovers itself.
Does surgery really cure UC? I believe there is no medical cure so therefore surgery to remove the affected bowel and rectum does cure you of the bowel issues, there are other manifestations that some medical professionals and patients believe are still left such as painful joints and skin issues, I would agree with those people and also say that if Crohns disease can affect other parts of the body then colitis can too. They are both digestive diseases that can and do cause other problems, but I will also admit that removing what is diseased can improve other issues which would probably be worse due to the inflammation in the gut. This inflammation would cause systemic disturbances elsewhere in the body i.e temperature, tachacardia weight loss, vomiting, losing blood, to name a few. But, another theory is that most patients who have a J pouch often get pouchitis, is this ulcerative colitis that has affected the new pouch ( which is, incidentally, made from the small bowel) hmmm food for thought…..maybe Crohns disease and ulcerative colitis are even more alike than first thought. I was diagnosed as indeterminate colitis, which means they were not sure which disease I actually had, and was diagnosed with Crohns then colitis and back again many times.
All I know is, I am certainly much better having had the large bowel, rectum, and anus removed, but there have been trade offs.
( my new tat, which I love, it is everything about my surgery and how I feel, with a nod to Crohns & colitis UK with the purple centre)