felt pretty goof first half of day.....a little more gassy and painful later on. i expected not to feel well today, but it bothered me that the day started off good, then got worse. oh well, tomorrow is a new day.
be well
Friday, July 18, 2014
Thursday, July 17, 2014
today is the day
So, wish me luck!
Short n sweet, i did my colonoscopy prep.....no eating......lots of shitting.
I have to show up at hospital at 1:30pm. procedure should start at 3pm. my donor already dropped off "the goods" Not much else to say, im optimistic and looking forward to getting through it and out on the other side better than ever. .......plus im hungry as fuck ;)
Short n sweet, i did my colonoscopy prep.....no eating......lots of shitting.
I have to show up at hospital at 1:30pm. procedure should start at 3pm. my donor already dropped off "the goods" Not much else to say, im optimistic and looking forward to getting through it and out on the other side better than ever. .......plus im hungry as fuck ;)
Sunday, July 6, 2014
Ups and Downs
OK. im getting another opportunity to do the transplant. This time it will be done by a doctor, in a hospital via colonoscope. im not feeling like writing alot right now, but please feel free to ask me questions, and i will keep updated on my process. the procedure is scheduled for 7/17/14.......about 10 days from now. high hopes!
Sunday, March 16, 2014
humble apologies
I am sorry that I have not updated this blog recently. One of my reasons for not keeping current is that I felt as though I had no news to report. I have decided (at least temporarily) not to attempt the fecal transplant procedure as I had previously planned. My decision had to do with many factors, but to simplify it, I was feeling the best I have felt in 3 years, and did not wish to jeopardize the progress I had made with such an unknown procedure as this. I decided I was not ready for that risk. since then, my symptoms have worsened slightly, but my opportunity to do the fecal transplant is not currently available to me. I will keep it as an option for the future, and will certainly update here if anything changes. I am sorry if I have let anyone down, and I wish you all luck and happiness moving forward.
be well
be well
Saturday, February 15, 2014
consistency (or lack thereof)
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
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
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
Wednesday, January 29, 2014
Post colonoscpy
Alright, so I had my colonoscopy preformed two days ago. The procedure seems to be a bit ore of a jolt to the system than it used to be, and I am still kind of recovering though I would say I am feeling mostly back to my version of normal. To get right in to it I want to discus the results I have received so far. I know I was consulted by my doctor after the procedure, but of course I don't remember a thing (I always thought it was kind of a funny practice to wallop a person into "twilight" with a powerful drug cocktail and then try to discus serious health concerns with them). Anyway, I guess that is what my follow-up appointment will be about (which is over a week away because the doctor has to wait for the results from the biopsies he took during the procedure). What I did get was a brief printed overview of his initial findings along with some alien looking pictures of the inside of my colon. Some of the parts that I think are very positive I would like to tell you about first.
1. He was able to complete the procedure easily (which is kind of a big victory in my head because if your colon is really shot sometimes the cant risk going all the way through with the camera because of a risk of perforation)
2. I didn't see any mention of suspicious lumps, polyps, strictures, or any other really funky abnormalities that I feared may be growing in there.
3. The pictures and his description limited the expanse of the disease affected areas to the rectum and sigmoid colon (which means if your colon kind of looks like a big question mark ? the only affected parts would be the dot and just slightly above. This is a huge improvement from my last colonoscopy 3 years ago which identified my entire colon as being severely diseased.)
Probably the least uplifting part of the report is that it stated that the affected parts of my colon were "severe in severity" which not only is grammatically awkward, but also not something I like to hear about damage to a part of my body.
Overall I am encouraged by the results because from my interpretation a large portion of my colon has healed as compared to 3 years ago. Also I feel that I is a good thing that it is the end of my colon which is still most affected because I believe this area will be most easily accessed by the fecal transplant that I will be administering. (god I cant believe I am writing all this stuff on the Internet, there was a time when I would be too embarrassed to mention any of this to anyone)
So, to sum it up for the day, I am still feeling the forward progress toward my ultimate goal of using the fecal transplant to help heal my body. I will continue to work towards healing everyday, and my next step will be to meet with my doctor next Friday and further discuss his findings and hopefully get his blessing on beginning the fecal transplant. I very much hope he does not try to dissuade my intentions, but even if he does he will have to have some strong reasoning that I can agree with otherwise I will do the procedure against his advice. I am not rebellious or combatant, but I am at a point where I will use information to make my own decisions about what feels right to me.
For the next week or so I will try to keep updating on how I am feeling, and also try to give a little more background on myself, and some of the things I have tried or am currently trying with the intentions of regaining my health.
Be well until then,
Alex
1. He was able to complete the procedure easily (which is kind of a big victory in my head because if your colon is really shot sometimes the cant risk going all the way through with the camera because of a risk of perforation)
2. I didn't see any mention of suspicious lumps, polyps, strictures, or any other really funky abnormalities that I feared may be growing in there.
3. The pictures and his description limited the expanse of the disease affected areas to the rectum and sigmoid colon (which means if your colon kind of looks like a big question mark ? the only affected parts would be the dot and just slightly above. This is a huge improvement from my last colonoscopy 3 years ago which identified my entire colon as being severely diseased.)
Probably the least uplifting part of the report is that it stated that the affected parts of my colon were "severe in severity" which not only is grammatically awkward, but also not something I like to hear about damage to a part of my body.
Overall I am encouraged by the results because from my interpretation a large portion of my colon has healed as compared to 3 years ago. Also I feel that I is a good thing that it is the end of my colon which is still most affected because I believe this area will be most easily accessed by the fecal transplant that I will be administering. (god I cant believe I am writing all this stuff on the Internet, there was a time when I would be too embarrassed to mention any of this to anyone)
So, to sum it up for the day, I am still feeling the forward progress toward my ultimate goal of using the fecal transplant to help heal my body. I will continue to work towards healing everyday, and my next step will be to meet with my doctor next Friday and further discuss his findings and hopefully get his blessing on beginning the fecal transplant. I very much hope he does not try to dissuade my intentions, but even if he does he will have to have some strong reasoning that I can agree with otherwise I will do the procedure against his advice. I am not rebellious or combatant, but I am at a point where I will use information to make my own decisions about what feels right to me.
For the next week or so I will try to keep updating on how I am feeling, and also try to give a little more background on myself, and some of the things I have tried or am currently trying with the intentions of regaining my health.
Be well until then,
Alex
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