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
Sunday, January 26, 2014
one step at a time.
Today I am prepping for my colonoscopy which will happen tomorrow around 1 pm. At 5am I woke up and had an avocado (actually it was 2.....but they were kinda small....ish). I wasn't supposed to have anything, but seeing as how my scope is not till 1pm tomorrow, I still figure this gives me much more than 24 hours to have my system flushed clean. From prior experience, I believe this will be more than enough time. It is now 7pm and I have eaten nothing else. I have taken most of my prep medication along with ample amounts of water, some tea, and some broth.
As I have previously noted, I do have experience with colonoscopies. I believe this will be my 6th or 7th within the 8 or so years I have had ulcerative colitis. Though I do not have much fear of the procedure, and even feel fairly comfortable with the prep (as comfortable as possible), I am more afraid of the results from this scope than I ever have been before. I have been in some form of a flare consistently for over 3 years since my last scope. I am worried that my colon has not recovered since my last diagnosis of severe pan colitis, and may in some way have gotten worse or developed a cancer. I am afraid that the recommendation of my doctor will be to remove my colon as was the opinion of my last doctor when I had my exam 3 years ago. I am somewhere between anxious and excited to learn the state of my colon, hopeful that it has gotten much better over the last 3 years(as my symptoms would lead me to believe), and terrified at all the dreamed up horribleness of what may lurk below. I will do my best to adopt a positive outlook and believe that healing has occurred.
As for my ultimate goal of performing a fecal transplant on myself, using a friend as a donor, this colonoscopy hopefully will move me one step closer. My doctor said he would like to see a colon that appears to be in somewhat good shape before he can give me his go ahead blessing for trying this procedure. I guess I will know tomorrow. Also tomorrow my friend is due to have some tests run on himself, in order to make his donation (crap) most likely to be safe for me to use.
To anyone who may be reading I hope this whole procedure will go smoothly as possible and that my case will have a positive outcome empowering others who may be suffering and on the fence about trying fecal transplant.
be well,
Alex
As I have previously noted, I do have experience with colonoscopies. I believe this will be my 6th or 7th within the 8 or so years I have had ulcerative colitis. Though I do not have much fear of the procedure, and even feel fairly comfortable with the prep (as comfortable as possible), I am more afraid of the results from this scope than I ever have been before. I have been in some form of a flare consistently for over 3 years since my last scope. I am worried that my colon has not recovered since my last diagnosis of severe pan colitis, and may in some way have gotten worse or developed a cancer. I am afraid that the recommendation of my doctor will be to remove my colon as was the opinion of my last doctor when I had my exam 3 years ago. I am somewhere between anxious and excited to learn the state of my colon, hopeful that it has gotten much better over the last 3 years(as my symptoms would lead me to believe), and terrified at all the dreamed up horribleness of what may lurk below. I will do my best to adopt a positive outlook and believe that healing has occurred.
As for my ultimate goal of performing a fecal transplant on myself, using a friend as a donor, this colonoscopy hopefully will move me one step closer. My doctor said he would like to see a colon that appears to be in somewhat good shape before he can give me his go ahead blessing for trying this procedure. I guess I will know tomorrow. Also tomorrow my friend is due to have some tests run on himself, in order to make his donation (crap) most likely to be safe for me to use.
To anyone who may be reading I hope this whole procedure will go smoothly as possible and that my case will have a positive outcome empowering others who may be suffering and on the fence about trying fecal transplant.
be well,
Alex
Thursday, January 23, 2014
Numero Dos (get it?)
OK, this is post number two. My first goal is going to be consistency, then clarity, and hopefully someday a bit of fun and entertainment. I did not write yesterday, but some important things have happened. But first, as promised, a very quick attempt at a comprehensive overview of my history with ulcerative colitis, and my position with this disease today.
I was diagnosed with ulcerative colitis at about 25 years old. I was working construction in San Diego, California and my symptoms appeared suddenly, but were mainly mild. My diagnosis was mild proctitis which I believe is about as mild as one can possibly have UC. I was eventually put on a maintenance dose of APRISO (mesalamine) and was mostly symptom free for the next 5 years. I did sporadically experience "flares" which consisted mainly of some blood or mucus on the toilet paper. This never really impacted my life, and I do not remember feeling much concern. I had fairly regular colonoscopies, and may have shown some very mild progression, but nothing impactful.
Around the time I turned 30, I moved back to NY (where I am originally from) and within a few months I began to "flare", this time for real. Blood increased slightly at first, along with urgency. Next was frequency, and when I started having to go to the bathroom over 5 times a day with little warning or ability to "hold it" I quit my job. Even before I had gotten to that point I was seeing a doctor, and then another in NY. They tried the basic steps that every GI doc in the US will do. Mesalamine, then enemas, then steroids, then remicaid. Throughout these trials my symptoms continued to progress. Just before Christmas of 2011 I went to see my doctor and was immediately hospitalized. I was shitting blood uncontrollably over 30 times a day and all night. I was underweight, malnourished, and in fast decline. My hospital stay was 7 days long during which they treated me with IV steroids and after not responding sufficiently they requested to remove my colon. I decided not to let them because I saw a slight improvement. (I am trying not to be dramatic in my writing.)
I returned home still very sick, and have been in somewhat of a state of recovery ever since. Of course it has been 3 years now, so if I am recovering, its not a speedy one. I can say that nowadays I have to take a crap on average 4 times a day. I still have urgency, but I do have a little bit of a warning now, and don't have accidents very often. Blood is still present most of the time, though often it is very limited and sometimes just on the paper or not detectable at all (that always feels like a victory). My stools are mostly formed and look decent except a slight lack of digestion and probably the most concerning of all is that they are much thinner than I would like(slightly bigger than a sharpie marker). This thinness frightens me most because at the very best I believe it signifies inflammation; other possibilities are strictures and of course cancer.
Some other time I can elaborate more on my story, and all of the things I have tried in order to get myself to this point.
What I want to talk about a bit More is my progress towards doing a fecal transplant, using a friend as a donor, while staying at his house in San Diego.
Yesterday I saw a local GI doctor for the first time, as I thought it would be a good idea to develop a relationship with a doctor (you never know when you are going to need those guys). I explained to the doctor that I am planning to do this fecal transplant, and although he is skeptical of the transplant's ability to help me, he went along with it. He also had some of his own suggestions, which I will be following. On his advice I will be submitting to a colonoscopy this coming Monday (it is Thursday today). This will be a good opportunity to see how things look up there and to rule out things like colon cancer. It will also be nice to see if I have made some progress since my last colonoscopy when I was in the hospital 3 years ago. Also assuming that my transplant is a success, I may be able to visually confirm that by comparing before and after. I am actually a little afraid of what he will find in there since I have been sick fr so long, but this feels like the right thing to do, and I will face it.
He also made some suggestions about having my friend ( donor) tested for basic communicable diseases, and parasites. My friend has kindly enough agreed to have these tests run and will be going to the his doctor tomorrow.
So long story short, things are moving along, and I hope to begin the transplant procedure within the next week. Much more to come......Alex
I was diagnosed with ulcerative colitis at about 25 years old. I was working construction in San Diego, California and my symptoms appeared suddenly, but were mainly mild. My diagnosis was mild proctitis which I believe is about as mild as one can possibly have UC. I was eventually put on a maintenance dose of APRISO (mesalamine) and was mostly symptom free for the next 5 years. I did sporadically experience "flares" which consisted mainly of some blood or mucus on the toilet paper. This never really impacted my life, and I do not remember feeling much concern. I had fairly regular colonoscopies, and may have shown some very mild progression, but nothing impactful.
Around the time I turned 30, I moved back to NY (where I am originally from) and within a few months I began to "flare", this time for real. Blood increased slightly at first, along with urgency. Next was frequency, and when I started having to go to the bathroom over 5 times a day with little warning or ability to "hold it" I quit my job. Even before I had gotten to that point I was seeing a doctor, and then another in NY. They tried the basic steps that every GI doc in the US will do. Mesalamine, then enemas, then steroids, then remicaid. Throughout these trials my symptoms continued to progress. Just before Christmas of 2011 I went to see my doctor and was immediately hospitalized. I was shitting blood uncontrollably over 30 times a day and all night. I was underweight, malnourished, and in fast decline. My hospital stay was 7 days long during which they treated me with IV steroids and after not responding sufficiently they requested to remove my colon. I decided not to let them because I saw a slight improvement. (I am trying not to be dramatic in my writing.)
I returned home still very sick, and have been in somewhat of a state of recovery ever since. Of course it has been 3 years now, so if I am recovering, its not a speedy one. I can say that nowadays I have to take a crap on average 4 times a day. I still have urgency, but I do have a little bit of a warning now, and don't have accidents very often. Blood is still present most of the time, though often it is very limited and sometimes just on the paper or not detectable at all (that always feels like a victory). My stools are mostly formed and look decent except a slight lack of digestion and probably the most concerning of all is that they are much thinner than I would like(slightly bigger than a sharpie marker). This thinness frightens me most because at the very best I believe it signifies inflammation; other possibilities are strictures and of course cancer.
Some other time I can elaborate more on my story, and all of the things I have tried in order to get myself to this point.
What I want to talk about a bit More is my progress towards doing a fecal transplant, using a friend as a donor, while staying at his house in San Diego.
Yesterday I saw a local GI doctor for the first time, as I thought it would be a good idea to develop a relationship with a doctor (you never know when you are going to need those guys). I explained to the doctor that I am planning to do this fecal transplant, and although he is skeptical of the transplant's ability to help me, he went along with it. He also had some of his own suggestions, which I will be following. On his advice I will be submitting to a colonoscopy this coming Monday (it is Thursday today). This will be a good opportunity to see how things look up there and to rule out things like colon cancer. It will also be nice to see if I have made some progress since my last colonoscopy when I was in the hospital 3 years ago. Also assuming that my transplant is a success, I may be able to visually confirm that by comparing before and after. I am actually a little afraid of what he will find in there since I have been sick fr so long, but this feels like the right thing to do, and I will face it.
He also made some suggestions about having my friend ( donor) tested for basic communicable diseases, and parasites. My friend has kindly enough agreed to have these tests run and will be going to the his doctor tomorrow.
So long story short, things are moving along, and I hope to begin the transplant procedure within the next week. Much more to come......Alex
Sunday, January 19, 2014
The First Post
This is kind of a test post; the first of what I hope will be a fairly consistent stream of posts documenting as closely as possible, my journey with ulcerative colitis. I am starting this blog specifically at the point just prior to taking a scary step into the unknown world of fecal transplant.
For this new adventure, I have already traveled three thousand miles from my home in N.Y., to stay with a friend, who will act as my donor, in San Diego, California. I have been here for 2 weeks now, and am hoping my body is becoming acclimated to the environment. I hope to begin the procedure in about a weeks time from now (1/19/14). I am waiting on a bathroom remodel at my friend Matt's house where I am staying to finish. Also I have an appointment with a local gastroenterologist because I would like to establish some sort of relationship with a doctor while I am out here, just in case I need one, and also for consultation.
I think my next post will be some of my history, and also some of what I am doing to prepare for my next step. Take care until then!
Alex
For this new adventure, I have already traveled three thousand miles from my home in N.Y., to stay with a friend, who will act as my donor, in San Diego, California. I have been here for 2 weeks now, and am hoping my body is becoming acclimated to the environment. I hope to begin the procedure in about a weeks time from now (1/19/14). I am waiting on a bathroom remodel at my friend Matt's house where I am staying to finish. Also I have an appointment with a local gastroenterologist because I would like to establish some sort of relationship with a doctor while I am out here, just in case I need one, and also for consultation.
I think my next post will be some of my history, and also some of what I am doing to prepare for my next step. Take care until then!
Alex
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