First solid bowel movement in 3 years.

Its funny how something so simple, can bring such joy. When I told some close friends of this milestone they didn't share my excitement or jubilation. But I guess its difficult for someone who hasn't had chronic diarrhea for 3 years to understand.

Anyway I just thought I'd write this to share my experience in the hope it may help someone or give someone hope.

I was diagnosed with Ulcerative Proctitus/Ulcerative Colitus 3 years ago. At the time I was a 38 year old male, 188cm and 80kg. My health was pretty good and I ate fairly well. Non smoker/light drinker/no drugs. My bowel movements were regular and otherwise nondescript. However I had noticed the occasional blood streak on the side of feces (once every couple months). I mentioned this to a Dr and he said to keep an eye on it. When it happened 6 months later I was sent off for a colonoscopy.

This is where all hell broke loose. After the colonoscopy I was told I had UP/UC and within a day I started experiencing explosive bloody diarrhea. I apologise for being graphic, highlight to see yucky content but I was coating the toilet bowl in blood. Thankfully I was able to see a gastroenterologist within a couple days who put me onto a daily dose of Salofalk enema, which was great. After using it just once, the blood had stopped and urgency to go to the bathroom had subsided. I was also put on 4mg of Pentasa. I was prescribed this treatment for 3 months at which time I should stop all medication and see what happens. Within 5 days of stopping my symptoms returned.

I went to see a different gastroenterologist, who put me back on the same medication and said come back in 3 months and we'll see how its going. I remember at the time asking whether diet had anything to do with it and he said it did not. While I have no medical training, I found this a little hard to believe. Clearly my digestive tract was heavily inflamed, and in my mind, food was the most likely culprit. Regardless of the Dr's thoughts, I put myself on a strict diet to try and reduce inflammation. I focused on clean/fresh foods. I stopped all processed sugars (this was hell), went 100% gluten free and started taking probiotics and slippery elm bark powder.

After some time I went and saw another gastroenterologist, as the previous one was on extended leave, who decided I had been put on the wrong medication and replaced the Salofalk enema with a Colifoam rectal foam.
This focused the medication to the lower part of the rectum, whereas the Salofalk enema got the meds up much higher. I asked about my future with this disease and I remember him saying there isn't much you can do and you'd just have to live with it. From here things went from bad to worse. Because the Colifoam wasn't delivering the medication to the upper part of the rectum, where it was apparently needed, my symptoms worsened. I spiraled into a world of despair where I had constant diarrhea and was going to the bathroom 6 times before leaving for work in the morning, and regular trips throughout the day. The cramps while having a bowel movement to pass the smallest amount of diarrhea were so intense, I was almost doubled over on the toilet with my eyes watering. I endured this for around 6 months and lost 10kg (12% of my body weight)

I finally decided that I cannot go on like this and went back to see the 2nd gastroenterologist. I told him what was happening and he went through my files and then the strangest thing happened. He apologised to me. I dont know why but I was a bit taken back by this. He put me back onto the Salofalk enema, 6mg Pentasa and 40mg Prednesone (dropping 5mg a week). I also raised the possibility of a fecal transplant, which he felt I would be a good candidate for and could be considered in the future.

This change in meds stabilised things and gave me hope. After a cycle of prednesone, things were ok, but never great. It didn't take much to tip me over the edge. It could be a spicy meal, tomato rich meal or stress at work. Around this time I started seeing another Dr who put me on low dose naltrexone (4.5mg). Unfortunately things got bad again and I found the Salofalk wasn't as effective anymore. So I decided to put myself onto another cycle of Predesone. This gave some relief but when I got down to 10mg and things weren't improving, I decided I needed to try something different. Around this time, I had been reading about the side effects of prednesone and was quite hesitant to stay on it, let alone increase my dosage. So I decided to stop it all together. But I knew if I stopped it, I would have to counteract it with something else otherwise my symptoms would flair up again. I had previously read online people advising against eating grain, but as it made up such a big part of my diet, I had been reluctant to stop. But given where I was at, I was desperate to try anything. So I stopped eating all grain. A bit of background; for the last 3 years I had been eating a big bowl of gluten free cereal every morning. This consisted of Gluten Free Weetbix, GF museli, or some other GF cereal. I was also eating GF bread/pasta.

Within 2 days of stopping grain I had a semi-firm BM. As the salofalk enema tended to liquefy things, I stopped this and within a couple days my BM was hard and the water was clear. It actually hurt passing it.

It has now been 3 months and things have been going great. I'm only going to the bathroom twice a day and my BM are firm and formed. I do have the occasional loose BM but I'm not too worried about this. I'm still off the cereal for breakfast but I've found I can still have the occasional grain meal without any side effects (pasta, pie, burger etc). I've also slowly started putting weight back on which is fantastic. Also stress doesn't seem to have such an impact anymore. I now know "no grains" is part of the SCD diet, but I eat most of the other things on the "don't eat" list.

As bad as this experience has been for me, I know it could have been so much worse. When I see stories of people having surgery to combat this, its truly upsetting. Obviously everyone is different and people react to things in different ways. But for me, grain appears to have been a key factor in my disease. I'm unsure why this intolerance developed as I've eaten grains all my life, and testing has shown I'm not allergic, but I cannot dispute the results.

Currently I'm taking 4mg of Pentasa and 4.5mg of Naltrexone a day, and I have an appointment with a professor of gastroenterology this Friday, so fingers crossed. I know I'm not cured and I'll need to be careful for the rest of my life, but I'm at a point where I can enjoy my life again and I'm very thankful for that.

Post Edited (SirPoosAlot) : 1/3/2017 7:26:53 PM (GMT-7)

DBwithUC said...
when the gut microbes are in dysbiosis there can be intolerance to foods previously tolerated

Thanks for the information. I'll look into that

"No grains" (almost none) has been beneficial to me also. Why? Don't know, except perhaps our guts cannot handle the additional work that grains require, heavy fiber is also non-tolerated by my gut.

I cannot eat cooked rice but a slice of Udi's bread made with rice flour is OK so that's why I think it's the bulk of grains rather than anything in them, dybiosis may also be a factor. I have been wheat-free for many years but grain-free for just the last couple years.

Eating low-fiber veggies and meat makes my gut happy and no bleeding for years.
Yes there are still triggers (fruit and juice is a big one) but that could be IBS.

Glad you got results, took me many years to get to my remission.

Thanks everyone for you kind thoughts and apologies for not responding sooner. I have just received my report from the professor and thought I'd share some of the points which we discussed. Obviously this advice was intended for me and my situation and wouldn't apply to anyone else. But it still might be helpful/informative to others.

He has recommended I eat foods/take supplements which contain apple pectin, n. acetyl glucosamine & inulin as they promote faecalibacterium prausnitzii which will help fight the colitis fusobacterium which causes UC.

He is also of the belief the Naltrexone isn't helping and should be stopped. This could be true as it didnt help when I had a flair up. However I'm still reluctant to change anything while things are going good. Also his clinic used to prescribe this for UC, but stopped as it didnt prove to be beneficial.

He has provided me several referrals for pathology tests which look for calprotectin in a stool sample. Apparently based on these results, they can determine the level of inflammation. Any result under 50 is normal. So it will be interesting to see where I'm at given I have no symptoms.

The other thing which was quite interesting, is that he is quite confident he can cure me. The Prof I saw has been doing fecal transplants for many years and is constantly working on better ways to implant healthy donor flora into patients. The current process involves daily enemas for 2 weeks and while they claim to have had a good success rate, they are looking at developing capsules to swallow instead. As my health is good at the moment, he has suggested to continue with what I'm doing but once their success rates have improved and the delivery system has been fine tuned, he thinks I should give it a go. While this does sound promising, he advised it doesn't work for everyone.