So I was out of hospital and home and attempting to change my diet radically to bring about whole healing. I obviously had check ups at the hospital and GP. I had an appointment with the specialists two weeks after the surgery. I was told I needed to go onto 3 monthly b12 shots, yearly iron infusions (dependant on my levels of energy) and every now and then have colonoscopy to see how things are going in my gut. My first one would be in a year post this surgery. I was also told I needed to go onto some drugs, one being a new drug that had been developed for crohn's patients recently. I was told it was still being trialled but would be hugely beneficial if I went on it. I asked if I should change my diet and if it would do anything? He said that diet wouldn't do anything and there is no point trying. I will have crohns disease for the rest of my life and I will be on drugs for the rest of my life. I was a little dumbfounded and struggled with that statement. I had a lot to digest and think on.
Firstly I looked into these drugs I was to apparently to go onto for the rest of my life. Imuran and infliximab were two mentioned. I looked into them all, checked out side effects, looked into research papers that I could get my hands on to find out about them and their postive and negative effects on my mind and body. The bad outweighed the good for me and I just could not bring myself to being dependant on them. I decided that for 1 year I would go hard core with my diet and then have some blood tests done to see how I was going and have the colonoscopy. If all was well I would continue my diet/lifestyle changes. If the disease was re-occurring then I would take the medication route they were suggesting strongly.
I started having b12 injections at the doctors surgery. I went in a month or so after surgery also, to have an iron infusion. I went into the Holman Clinic at the hosiptal and sat in a chair and had iron infused into my veins for about 5 hours. I was told I needed these two things as my body could no longer absorb iron and b12 in the gut.
About 12 months to the day, post surgery, I ended up in hospital again. I had been vomiting huge amounts and had increased pain. It all happened within a matter of hours, it did not build up to that point like previously. I was living with mum and dad at the time and dad took me in to the after-hours doctors surgery. He checked me over and could tell I was obviously very unwell. I was so worked up and anxious due to all that had previously happened I was hyperventilating and vomiting and ended up dry wreaching when I had nothing left to vomit. It was awful. I was transferred over to the emergency department. After they had checked me over and done some tests they said I had a twisted colon (which is common at the site of scar tissue - which actually has nothing to do with crohns itself). I was relieved to know it wasn't crohns related as such. They said they had to put a nasogastric tube down my nose and throat and to put me on IV fluids. They said they needed to see if my bowel would untwist itself or if not, I would need to go in for more surgery and have it manually untwisted. I was devastated and sickened to the gut about what could potentially be ahead. I could not handle going through surgery again. I fought with the doctor about having the NGT. I just wanted to get out of there. I was being unreasonable. I felt so angry and frusturated. I had been working my arse off all year to get my diet under control and this happens. Yet, it wasnt diet related at all. Its just the potential repercussions of what can happen after you have had bowel surgery.
After I had settled down and the doctor had explained to me the neccessity of the NGT I had it put down and an IVC put in and I was later on taken up to a ward, the same ward I had recovered in a year ago after theatre. I was there for 4 days. I couldnt eat until the doctors gave the word to say all was clear and I had bowel movements again, then I was eating again after 3 days, and my amazing mum brought me in homecooked healthy food. I left hospital and went to uni as I was in my first year of nursing. Didnt want to miss more classes.
At some point throughout this year (maybe 6 months post surgery) I also went and saw Leciester Jones, a doctor of nutrition and educated in many health alternatives. He is highly knowledgeable and I valued alot of what he had to say. He said that I need to start eating some lamb here and there to get some iron into me. He said to steer clear of the iron infusions and try and get iron into me as natural as possible. I am better off having iron supplements and some lamb. He mentioned some other things that I will mention about in another blog. Thats another blogs worth of info.
About 12-14 months post surgery I went to see my GP about cancelling my B12 injections and iron infusions as I found a cheaper oral alternative that was something you only had every couple of months sublingually (under the tongue). He checked it over and was hesitant. I said can I try it for 3 months and then come back and have some blood tests to check my iron and B12 levels. He agreed. I also was scheduled for a colonoscopy. I went for the procedure at the hospital and about a week or so later went and saw my GP for all the results. I waited in the waiting room for a while and was quite nervous about my results. I didnt know what to expect. If things were bad and flaring up I would need to re think my strategy (not that anything indicated that was the case).
My GP called me in and sat me down and stated that he was thrilled with my results. My iron was through the roof and I needed to tame it down a bit! My B12 levels were normal. My colonoscopy results were amazing. There was NOTHING to indicate that I even had crohns except for the scar and the missing parts of my bowel! WOW. I was stoked. He said to just keep doing what I am doing. That was testament for itself. What I was doing was working. I was so thrilled. All that work paid off!! I see that as God powerfully bringing healing to my body and along the way has taught me an incredible amount about myself and the body and mind. I see it as a MIRACLE and I am incredible grateful of which I am not about to throw it all away by going back to eating the way I used to...as some people did ask.
This was an entire mindset and lifestyle change that was to continue and to grow for the rest of my days as my knowledge would increase. I was so excited and super keen to keep growing in my understanding and pursuit of good health and helping those the best that I can with my testimony and knowledge to those that wanted to know and understand more.
I must say, after all this, 6 months later I think, I was scheduled for another appointment at the hospital with the gastroenterologist's registrar. Not the same one I had 18 months ago. I went in for the appointment. I thought it was just going to be a general check up and I thought he would be thrilled with my results. I was wrong of course. I sat down in his office and he stated that I needed to start on the crohns medication and that I needed to have a colonscopy soon again. I went into explain that after looking into the drugs I had decided a while ago that I would not take them. They would be my backup if changing my diet did not work. I also mentioned that I did not want a colonoscopy. I had only had one 6 months ago with a clear result and did not see any need for another one. They can be dangerous causing perforated bowels and I only see the need for one if absolutely neccessary. I explained my side to him and what I had chosen to do and that my diet was working very well for me and that my GP is very happy with my results. He was angry with me and I left.
I understand that he has a place to share with me what he understands I need. They have to. Its their job to reccomend the medical treatment for health problems. And he did it well, but it wasnt enough to convince me that I needed it. Some doctors need to be aware of other ways of bringing about health to the body. Some, like the one I went to see that day, had boxes to tick and things to be done and drugs to prescribe. He has no understanding of nutition. His background is in medicine so I dont expect him to know about nutrition. But I do expect him to respect my decisions. Then, some doctors, like my GP, I appreciate that he has worked with me on this and helped me become more in control of my health and respecting my informed decisons and celebrating with me such good results.
Thanks for reading.
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