My first specialist helped me get through the initial diagnosis 13.5 years ago when I was pregnant and terrified. He helped me maintain relatively good health over the next 11 years. He always listened and I liked him. And that's even after he looked at my complexion and said, "Just like my wife. You will likely have hair growth from the Pred. Just don't shave."
What he didn't think much of was probiotics. As a result, I didn't have any guidance in the matter. I went to Costco, found a big bottle of something that looked good and bought it. I have been taking one pill a day for months. Last month I ran out. I didn't rush out to buy more because I didn't really think that the one pill was doing much for me. I am now not so sure.
After over a month without the probiotics, things are changing. I have started to need multiple bathroom trips per day and I am having some pain. No tears. No blood. Things aren't at a crisis but I am wondering if something is brewing.
I am also wondering if it is a coincidence that this has happened after I went off the probiotics. Lots of things are a little off, most noticeably, my ability to maintain a balance in the fungal matter in and on my body. That is terrible. It is also something I suffered from for a couple of months at this time last year. Just 2 months before my illness got out of control. Are these things related? I don't know that either.
I have ordered a probiotic off of the internet. My partner is a scientist and last week he met with many doctors doing research in the area of crohn's and colitis. One of the specialists recommended this type. She indicated that her patients had great success. It is VSL#3 (for the Canadian site). It arrives tomorrow.
Has anyone used it?
Monday, November 23, 2009
Friday, November 13, 2009
Scored!
I went to meet a new doctor today. I was the first appointment of the morning and I didn't have to wait. He was on time and friendly. He noted that I had already seen a GI in my new home town and asked what had gone wrong. I told him the first one was such a big specialist that there didn't seem to be room on my health care team for me. He said that he was also a specialist and we would have to see if this would work. He grinned. He asked who it was and I told him the other doctors name. "Oh! He has an office right down the hall."
He took a history. Asked lots of questions and was impressed with some of the details that I could share. He told me it was okay that I adjusted my meds as I noticed changes but that I have to be careful this soon after such a major flare. He did not tell me that I should take more. He did not question that the meds were making all of my hair fall out. He gave me a book to take home and he had an open mind about probiotics.
He did not question my diagnosis or change it.
He did think it was important that he see exactly what is going on in there at this point so I am once again scheduled for a scope. And just to keep things interesting, this doctor prefers a different prep than my old doctor. I liked the old one. It was easy to use and palatable. This new one requires that I drink 4 liters of fluid. I don't know the name of it but I am sure that will be fun day. It won't happen until January.
All in all, this was a good first appointment. I will go back to see him again. Good news.
He took a history. Asked lots of questions and was impressed with some of the details that I could share. He told me it was okay that I adjusted my meds as I noticed changes but that I have to be careful this soon after such a major flare. He did not tell me that I should take more. He did not question that the meds were making all of my hair fall out. He gave me a book to take home and he had an open mind about probiotics.
He did not question my diagnosis or change it.
He did think it was important that he see exactly what is going on in there at this point so I am once again scheduled for a scope. And just to keep things interesting, this doctor prefers a different prep than my old doctor. I liked the old one. It was easy to use and palatable. This new one requires that I drink 4 liters of fluid. I don't know the name of it but I am sure that will be fun day. It won't happen until January.
All in all, this was a good first appointment. I will go back to see him again. Good news.
Tuesday, October 20, 2009
Nothing about UC because sometimes there are other things going on
I was driving to a meeting the other day and found myself sitting behind a stopped bus. I watched the next lane in my rear view mirror and waited for an opportunity to change lanes and get past the bus. When the traffic cleared I signaled and started to move into the next lane (which was okay since this was a four lane road).
At the same time, the car sitting directly behind me decided to pull out and the driver of said car thought it would be okay to cut me off and honk at me. I was not impressed and having my wits about me, I put my foot on the break pedal and my middle finger up against the window.
As he starts by me (still honking), he sees my raised finger and we make eye contact. He stops his car. He puts his car in park in the only open lane and gets out of his car. He walks over to my window and begins to gesture and speak. I can't hear him. I have the radio on. But I do see his lips moving. I don't think he is saying anything very nice.
What is a girl to do?
I looked him square in the face and said, "Stop being a Jerk". He seemed to slow down. I said it again. He stared at me. I noticed movement to my right and checked up in time to see the bus starting to pull away. The bus left. That meant I could too.
I waved to my new friend and drove away. I watched in my rear view mirror as he walked back to his car with blocks of traffic sitting behind him all wishing they could lose control and run him down. A few lights later he had caught up to me but when he should have pulled up beside me at the intersection, he held back. Was he marking down my plates or making sure I couldn't see his? Before the next lights, he turned into a gas station and I haven't seen him since.
At the same time, the car sitting directly behind me decided to pull out and the driver of said car thought it would be okay to cut me off and honk at me. I was not impressed and having my wits about me, I put my foot on the break pedal and my middle finger up against the window.
As he starts by me (still honking), he sees my raised finger and we make eye contact. He stops his car. He puts his car in park in the only open lane and gets out of his car. He walks over to my window and begins to gesture and speak. I can't hear him. I have the radio on. But I do see his lips moving. I don't think he is saying anything very nice.
What is a girl to do?
I looked him square in the face and said, "Stop being a Jerk". He seemed to slow down. I said it again. He stared at me. I noticed movement to my right and checked up in time to see the bus starting to pull away. The bus left. That meant I could too.
I waved to my new friend and drove away. I watched in my rear view mirror as he walked back to his car with blocks of traffic sitting behind him all wishing they could lose control and run him down. A few lights later he had caught up to me but when he should have pulled up beside me at the intersection, he held back. Was he marking down my plates or making sure I couldn't see his? Before the next lights, he turned into a gas station and I haven't seen him since.
Sunday, October 4, 2009
Waiting
I have an appointment scheduled with a new doctor. It is over a month away. I have my fingers crossed that this doctor will be a good match for me. He or she will value my experience and opinion and take it into consideration. I will be part of my health team!
You can stop laughing at me now. A girl can dream.
My update is that I have more of the same. I have more joint pain and discomfort. It is mostly in my neck and shoulders but it does hurt down my arms sometimes. I have more pain in my abdomen, more diarrhea and more moments of urgency. But things could be worse. Things could be much worse. I continue to fight off this bug that threatens to make my nose run, the throat hurt and head fog.
We went away from the weekend and so I was unable to be comfortable. I couldn't go when I needed to even when there was facilities. Sometimes I just go and sit and nothing happens even though I really need to go. It is not constipation, it is comfort. I have the same problem in public bathrooms as I do in other people's homes; sometimes. It is and unpredictable complication.
You can stop laughing at me now. A girl can dream.
My update is that I have more of the same. I have more joint pain and discomfort. It is mostly in my neck and shoulders but it does hurt down my arms sometimes. I have more pain in my abdomen, more diarrhea and more moments of urgency. But things could be worse. Things could be much worse. I continue to fight off this bug that threatens to make my nose run, the throat hurt and head fog.
We went away from the weekend and so I was unable to be comfortable. I couldn't go when I needed to even when there was facilities. Sometimes I just go and sit and nothing happens even though I really need to go. It is not constipation, it is comfort. I have the same problem in public bathrooms as I do in other people's homes; sometimes. It is and unpredictable complication.
Monday, September 28, 2009
Sometimes I am sick
Today I didn't feel too great. I had a couple of emergency trips to the bathroom, I felt sick at lunch time and was only able to eat half a bowl of soup, and I had stomach pain during my afternoon meetings. My first thought is to blame it all on my UC. Makes sense doesn't it?
Then I think about the other things that I felt today. I woke up early and felt sick in my throat. I was able to eat dinner and then some chocolate later on. I was so tired I came to bed right after dinner and I have pain in my ears.
In between all of the bad moments I felt fine (nearly). I stayed at work all day and was able to participate.
I think I am sick but I don't think it is my UC. I probably have a bug.
Then I think about the other things that I felt today. I woke up early and felt sick in my throat. I was able to eat dinner and then some chocolate later on. I was so tired I came to bed right after dinner and I have pain in my ears.
In between all of the bad moments I felt fine (nearly). I stayed at work all day and was able to participate.
I think I am sick but I don't think it is my UC. I probably have a bug.
Wednesday, September 16, 2009
As of today
As of today, I have an appointment with my new general practitioner tomorrow for a physical. I will review with her how the GI appointment went and how I am feeling about his doctor. I have the name of a doctor that my friend is really happy with. I may just have to ask for a new referral. I can't imagine continuing to see a doctor who I think doesn't listen to me. There is enough of that in my life already, I will not continue to wait in a waiting room full of sick people to let a doctor ignore me.
As of today, I am still taking my original medication (mezavant). I decided not to change things until I am convinced to stick with a certain doctor. I have stopped using my suppositories and enemas because it was suggested that I should and for some reason I have decided to take that advice and not the other. I am not claiming that I make any sense.
As of today, I am out $180.00 for the prescription that I filled before I realized that I was not going to switch meds right away.
As of today, I am suffering occasional colon pain and regular joint pain. I am loosing hair at an alarming rate. I am eating well, taking my vitamins and probiotics and making less than 6 trips to the bathroom each day (although it is not the desired consistency).
As of today, I am working hard, loving my new home, enjoying my otherwise healthy family and managing my stress fairly well.
As of today, I am not getting sicker.
That is my measure of goodness. As of today, life is good.
As of today, I am still taking my original medication (mezavant). I decided not to change things until I am convinced to stick with a certain doctor. I have stopped using my suppositories and enemas because it was suggested that I should and for some reason I have decided to take that advice and not the other. I am not claiming that I make any sense.
As of today, I am out $180.00 for the prescription that I filled before I realized that I was not going to switch meds right away.
As of today, I am suffering occasional colon pain and regular joint pain. I am loosing hair at an alarming rate. I am eating well, taking my vitamins and probiotics and making less than 6 trips to the bathroom each day (although it is not the desired consistency).
As of today, I am working hard, loving my new home, enjoying my otherwise healthy family and managing my stress fairly well.
As of today, I am not getting sicker.
That is my measure of goodness. As of today, life is good.
Tuesday, September 8, 2009
A New GI God
Yes I met a new God today. He is, "GI GOD". (Make sure you pronounce that correctly, pause after the is and say the rest in a deep announcers voice as if you are announcing the coming of a super hero.)
I have moved to a new city and I had to find a new GI Guy. My last one may have spoiled me a little because he listened to what I said and took me seriously as a partner in my health care. He also had it a bit easier as I was a novice at UC, prednisone and flares when I first went to see him. That made me agreeable and less likely to be insistent.
I went to see a new doctor today. After an hour and a half wait for a consultation, and a three minute discussion this new doctor announced that my meds needed to be changed and that I was also suffering from irritable bowel syndrome. He didn't look at the form that they had me fill out and he didn't examine me. He asked a few questions, gathered some of the information and made it all fit as per the textbook.
I left feeling frustrated. I will make the medication changes shortly (not immediately since he only gave me four weeks of medication and an appointment in 6 weeks) even though I think someof the changes could have disaterous results. I am changing from mezevant to Asocal. I am hoping that this change is for the better and that my colon feels a little better while my hair stops falling out. He also wants me to stop using my suppositories despite the fact that they are what keeps the proctitis under control (and allows me to pass anything).
I typically cycle between boughts of diarhea and a total inability to pass anything. Usually, when I can't have a bm it is because I am so swollen that nothing can get through. A couple of suppositories can make all the difference. He wants me to stop doing that and start using a laxative. Holy Crap! I really don't want my bm's to be any looser than they already are. I am not sure what to do about this advice.
And by the way, I think this whole Irritable bowel thing is a bunch of wankery. I have other parts that are irritable.
I am going to try the new meds for a month and see how it goes. Then I will return to see this doctor and hope that I can connect with him a little better. I do think I was able to convince him that the Mezavant was doing bad things to my hair. Maybe I will have to teach him one new thing about me each visit.
I have moved to a new city and I had to find a new GI Guy. My last one may have spoiled me a little because he listened to what I said and took me seriously as a partner in my health care. He also had it a bit easier as I was a novice at UC, prednisone and flares when I first went to see him. That made me agreeable and less likely to be insistent.
I went to see a new doctor today. After an hour and a half wait for a consultation, and a three minute discussion this new doctor announced that my meds needed to be changed and that I was also suffering from irritable bowel syndrome. He didn't look at the form that they had me fill out and he didn't examine me. He asked a few questions, gathered some of the information and made it all fit as per the textbook.
I left feeling frustrated. I will make the medication changes shortly (not immediately since he only gave me four weeks of medication and an appointment in 6 weeks) even though I think someof the changes could have disaterous results. I am changing from mezevant to Asocal. I am hoping that this change is for the better and that my colon feels a little better while my hair stops falling out. He also wants me to stop using my suppositories despite the fact that they are what keeps the proctitis under control (and allows me to pass anything).
I typically cycle between boughts of diarhea and a total inability to pass anything. Usually, when I can't have a bm it is because I am so swollen that nothing can get through. A couple of suppositories can make all the difference. He wants me to stop doing that and start using a laxative. Holy Crap! I really don't want my bm's to be any looser than they already are. I am not sure what to do about this advice.
And by the way, I think this whole Irritable bowel thing is a bunch of wankery. I have other parts that are irritable.
I am going to try the new meds for a month and see how it goes. Then I will return to see this doctor and hope that I can connect with him a little better. I do think I was able to convince him that the Mezavant was doing bad things to my hair. Maybe I will have to teach him one new thing about me each visit.
Subscribe to:
Posts (Atom)
