Sorry to anyone who may have been reading this post and waiting for an update. I have been indecisive about what step to take next and so that is partially why I have not written. I am still not sure of what I will do next, but I just wanted to update the blog because I believe in transparency, even if it is a bit messy.
I did go to see my doctor last week for a followup visit from my colonoscopy. The news I got was not exactly what I wanted to hear (because of course I wanted him to tell me that I am cured!), but the news was overwhelmingly positive! I like lists, so lets do that....
positive-
1. He was able to complete the colonoscopy.(this may seem silly, but I was worried that my colon was so bad that he may not have been able to complete the procedure for fear of perforating the colon, which happens on rare occasions).
2.no sign of Dysplasia in the biopsies taken (this means no abnormal cell growth in the areas of the colon where the Doctor took samples). this is good because not only was the no large cancerous growth that I was afraid of, no abnormal cells is a good indication that there is no cancer imminently brewing.
3. OK, this to me is the BIG news. my last diagnosis 3 years ago when I was hospitalized was officially "severe pan colitis" which is about as bad as a ulcerative colitis diagnosis gets. It means that my entire colon was affected and the degree was severe which is the worst. At that time the doctors prognosis was that my colon was beyond the point where it could be healed, and that it needed to be taken out immediately.
Following this recent colonoscopy my doctor indicated that over 3/4 of my colon had been completely healed. Specifically my ascending, descending, and traverse colon are not currently being affected by the disease and appear COMPLETELY NORMAL!
the not ideal-
1. the part of my colon that is affected (namely rectum and sigmoid) are still in a severely affected state. This is not great obviously because of the fact that "severe" means its still pretty messed up. Also the location, although in some ways a positive, is also inconvenient because this area is kind of like your shit valve, so having the disease active there means that it is still impacting my ability to have control over when I need to use the bathroom. Basically all goes well on the journey through most of my gut, but when it gets to the end, sudden urgency is created......this a bit of a challenge to deal with, but on the bright side it is much better than it used to be.
2. even though it is only a small part of my colon that is now affected, the fact that it is severe means that I have a breakdown in the mucosal layer of the colon which is of key importance for protection against any nasty little diseases or pathogens entering the blood stream. because I do not have this protection, and I may have some open sores in the area, my doctor advised against doing the fecal transplant at this moment.
All of this being said, I am still unsure of what I will do in the future, and when. I am considering many options. I am not one to just take the doctors advice just because he said it, if I were, I already would not have a colon. I do however value the doctors opinions, advice and knowledge, and must consider it. He also recommended, because of the location that I incorporate enema and suppository mesalamines (anti-inflammatory) into my medication regiment. I am also considering this. I am still open to all possibilities as I continue to feel better everyday, and continue to see improvements in my symptoms. If there is anyone out there reading this blog I certainly not about advice, thoughts or comments on my own situation or yours. I check my blog regularly and you can leave anything you'd like in the comment box.
thanks again,
I wish you well
Alex
Saturday, February 15, 2014
Sunday, February 2, 2014
Waiting
Right now I am having a little bit of an exercise in patience. My biopsy results from my recent colonoscopy will not be ready till next week, and so the meeting with my GI will be on Friday at which time we shall go over the results and discuss the situation. I am anxious for two reasons.
1. I want to hear from the horses mouth exactly how the procedure went, his impressions, the results of the biopsies, and his suggestions for what I should do next.
2. I am waiting t meet with him before I start my fecal transplant......and I just want to see if it is going to work already!
In the meantime, I just want to tell everyone some of the things I have been doing and trying since my release from the hospital after a diagnosis of severe pan colitis 3 years ago. As I seem to have done some healing in that time, and my symptoms have gone from 30 uncontrolled bloody explosions a day down to 3 or so reasonably formed (albeit thin) stools with barely any blood, I feel it is important to explain what I think MAY have helped me thus far.
1. Specific Carbohydrate Diet- I have practiced this for the entire 3 years and have been quite ridged about it. I do believe it may help, though it has not worked quite as well or quickly as it has for some. You also must take into effect that I was starting from and extremely diseased state. Also I found many "legal" foods on the diet that impacted me very negatively, nuts and fruit being the two biggest offenders. I think that with any diet one chooses to follow, listening to your body is an important part of success.
2.Probiotics- I have tried numerous brands in pill and powder form. I think for the most part many of them are still to strong for me. It seems that the stronger version that I buy, the worse of a reaction that I have. I know some people say that is just an initial reaction, but I have tried to push trough this and it has gotten to the point where I could not reasonably continue, the damage being done was too great. I do believe in the concepts behind them (obviously since fecal transplant operates on the same theory that UC is affected by gut bacteria), but for whatever reason the pills have not helped me much yet. I hope after ore healing occurs, I can work up to a greater capacity for probiotics. I have had greater periods of success with food based probiotics like yogurt and sauerkraut, although at times I have had to discontinue and then resume my consumption. In short, I think that I have to be careful with probiotics if my gut is in an extremely irritated state.
3. L-glutamine- I have used the powder and pills. there were times when I thought it provided improvement, but no convincing results.
4. Intestive - this is some sort of fish protein product, I actually do believe it helped me for some time. just like with some other things though I would usually get to feeling a bit better, then push out of my comfort zone with the diet and have disastrous results.
5. Acupuncture- did this for quite a few months twice a week and took herbs. this may have helped slightly, but I just ran out of money because it was so damn expensive. One bad thing about it in my experience is that I believe the reason why acupuncture works for some conditions is that it can be very calming and meditative. The problem in my experience with UC is that the anxiety produced by having needles in you, and being expected not to move for over a half an hour when you may suddenly have to rush to the bathroom at any moment made me unable to get into that meditative zone very often.
6. Yoga - this is has similar benefits and drawbacks as acupuncture. I think very light yoga can be good when very sick, but best if it can be practiced at home or alone. Going to a difficult class, where there is the stress of a possible accident may not be beneficial.
7. Breathing/meditation exercises at home - this helps, and with more than just UC. I only wish that I were more disciplined in practicing.
8. Olive oil - 3 tbs a day, no real effect
9. Chlorophyll - no help
10. there is a bunch more silly things I have tried, but none that I can think of are worth mentioning.
I think diet, and stress have large influences on the activity of out disease (I know that's nothing new), I think in today's society we compromise these two areas easily, and I personally am working on treating my diet and emotional well being with the utmost care.
be well,
Alex
1. I want to hear from the horses mouth exactly how the procedure went, his impressions, the results of the biopsies, and his suggestions for what I should do next.
2. I am waiting t meet with him before I start my fecal transplant......and I just want to see if it is going to work already!
In the meantime, I just want to tell everyone some of the things I have been doing and trying since my release from the hospital after a diagnosis of severe pan colitis 3 years ago. As I seem to have done some healing in that time, and my symptoms have gone from 30 uncontrolled bloody explosions a day down to 3 or so reasonably formed (albeit thin) stools with barely any blood, I feel it is important to explain what I think MAY have helped me thus far.
1. Specific Carbohydrate Diet- I have practiced this for the entire 3 years and have been quite ridged about it. I do believe it may help, though it has not worked quite as well or quickly as it has for some. You also must take into effect that I was starting from and extremely diseased state. Also I found many "legal" foods on the diet that impacted me very negatively, nuts and fruit being the two biggest offenders. I think that with any diet one chooses to follow, listening to your body is an important part of success.
2.Probiotics- I have tried numerous brands in pill and powder form. I think for the most part many of them are still to strong for me. It seems that the stronger version that I buy, the worse of a reaction that I have. I know some people say that is just an initial reaction, but I have tried to push trough this and it has gotten to the point where I could not reasonably continue, the damage being done was too great. I do believe in the concepts behind them (obviously since fecal transplant operates on the same theory that UC is affected by gut bacteria), but for whatever reason the pills have not helped me much yet. I hope after ore healing occurs, I can work up to a greater capacity for probiotics. I have had greater periods of success with food based probiotics like yogurt and sauerkraut, although at times I have had to discontinue and then resume my consumption. In short, I think that I have to be careful with probiotics if my gut is in an extremely irritated state.
3. L-glutamine- I have used the powder and pills. there were times when I thought it provided improvement, but no convincing results.
4. Intestive - this is some sort of fish protein product, I actually do believe it helped me for some time. just like with some other things though I would usually get to feeling a bit better, then push out of my comfort zone with the diet and have disastrous results.
5. Acupuncture- did this for quite a few months twice a week and took herbs. this may have helped slightly, but I just ran out of money because it was so damn expensive. One bad thing about it in my experience is that I believe the reason why acupuncture works for some conditions is that it can be very calming and meditative. The problem in my experience with UC is that the anxiety produced by having needles in you, and being expected not to move for over a half an hour when you may suddenly have to rush to the bathroom at any moment made me unable to get into that meditative zone very often.
6. Yoga - this is has similar benefits and drawbacks as acupuncture. I think very light yoga can be good when very sick, but best if it can be practiced at home or alone. Going to a difficult class, where there is the stress of a possible accident may not be beneficial.
7. Breathing/meditation exercises at home - this helps, and with more than just UC. I only wish that I were more disciplined in practicing.
8. Olive oil - 3 tbs a day, no real effect
9. Chlorophyll - no help
10. there is a bunch more silly things I have tried, but none that I can think of are worth mentioning.
I think diet, and stress have large influences on the activity of out disease (I know that's nothing new), I think in today's society we compromise these two areas easily, and I personally am working on treating my diet and emotional well being with the utmost care.
be well,
Alex
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