Hi,
Had another colonoscopy today. After last weeks blood work that led to telling me I had crohns. Everything was much less inflamed then the one in January and no ulcers. So now we wait for these biopsies to again play the guess what it is this week game
Since I am not responding to the prednisone he feels that we are back to square one. Iam being taken off all meds He wants me to finish out the last few tests and then maybe even go for a second opinion. It was like he has no idea so lets get her out of this office as fast as we can and let her be someone else's problem
So I will basically have no life there is no hope I will forever have this horrifying diarrhea 15 times a day. I will watch the world through my window
I thank all of you here who tried to help.
Good Luck
K
Colonoscopy and an I don't Know diagnosis
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Kitty,
I am SO with you on the doctor issue. I have been begging my doctor to reply to me all week, and ended up in tears, emailing my PCP for help getting to him, and calling the department to get a message to him.
Do NOT give up. Believe my, I truly understand you as I have many, many moments where I feel just as you do.
Doctors don't have the answers when it comes to this disease. It is totally mind boggling that so called "specialists" in the digestive tract cannot give answers regarding this disease of the digestive tract, and know way less about it than our friend Tex does.
When this first started I had WD 24 hours a day. I was up all through the night, crying as I washed myself when I dozed off and couldn't make the toilet. Then I went to soft serve a gazillion times a day, and then CONSTIPATION, which caused/es me to cry again with pain as I blow up.
And when I do get moving it's back to soft serve a gazillion times a day again.
Go out? Have fun? Travel? You have to be kidding! I am sensitive to EVERYTHING on everybody's menu!
And I am cursed with a hiatal hernia, severe esophagitis and constant pain. This, believe me, is a REAL curse.
Kitty - you are just at the beginning. Your gut will start to heal, and then you will see that there will be a few hours in a day where you don't need the toilet right by you. You can go for a walk, or go shopping, watch a movie, read ..or do something other than wait for the next bout.
I am SO with you on the doctor issue. I have been begging my doctor to reply to me all week, and ended up in tears, emailing my PCP for help getting to him, and calling the department to get a message to him.
Do NOT give up. Believe my, I truly understand you as I have many, many moments where I feel just as you do.
Doctors don't have the answers when it comes to this disease. It is totally mind boggling that so called "specialists" in the digestive tract cannot give answers regarding this disease of the digestive tract, and know way less about it than our friend Tex does.
When this first started I had WD 24 hours a day. I was up all through the night, crying as I washed myself when I dozed off and couldn't make the toilet. Then I went to soft serve a gazillion times a day, and then CONSTIPATION, which caused/es me to cry again with pain as I blow up.
And when I do get moving it's back to soft serve a gazillion times a day again.
Go out? Have fun? Travel? You have to be kidding! I am sensitive to EVERYTHING on everybody's menu!
And I am cursed with a hiatal hernia, severe esophagitis and constant pain. This, believe me, is a REAL curse.
Kitty - you are just at the beginning. Your gut will start to heal, and then you will see that there will be a few hours in a day where you don't need the toilet right by you. You can go for a walk, or go shopping, watch a movie, read ..or do something other than wait for the next bout.
Re: Colonoscopy and an I don't Know diagnosis
I understand exactly how you feel (since I was in exactly the same position, about 12 years ago), but I got my life back, and you can do it too.kitty16 wrote:So I will basically have no life there is no hope I will forever have this horrifying diarrhea 15 times a day. I will watch the world through my window
Less inflammation means that your diet is definitely helping. You may just need more healing time for the symptoms to resolve. It took me a long time to heal.
Finding a doctor who actually understands the disease, and who understands how to treat it would do wonders not only for your health, but for your outlook, also. He or she is out there, somewhere, waiting to be found.
I still think that C. diff is a strong possibility, mainly because of your failure to respond to prednisone.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Oh my, Kitty! I understand your despair, because I was in the exact same place during winter 2011, but don't ever give up! Even if your doctors don't seem to be able to give you answers, I can almost guarantee that you will gain relief from listening to folks on this board. No, we aren't doctors, but we all walk the IBD/ MC/CC/LC walk, and each of us has advice to offer that may help you, as it has helped me. Keep coming to this board; I haven't regretted for one minute that I found this community, and you won't either.
Suze
Re: Colonoscopy and an I don't Know diagnosis
Kitty-I hear your frustration and am so sorry you're going through this. It sounds as though your doctor is over his head. Please don't give up, you can get better and keep coming back to this board and vent away!kitty16 wrote:Hi,
Had another colonoscopy today. After last weeks blood work that led to telling me I had crohns. Everything was much less inflamed then the one in January and no ulcers. So now we wait for these biopsies to again play the guess what it is this week game
Since I am not responding to the prednisone he feels that we are back to square one. Iam being taken off all meds He wants me to finish out the last few tests and then maybe even go for a second opinion. It was like he has no idea so lets get her out of this office as fast as we can and let her be someone else's problem
So I will basically have no life there is no hope I will forever have this horrifying diarrhea 15 times a day. I will watch the world through my window
I thank all of you here who tried to help.
Good Luck
K
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Kitty,
I am sorry that you still have no answer or solutions. I think it is very hard to come to the realization that doctors are often very ignorant about some medical matters and not only do not have the answers but might even be giving bad advice. The good news is that there is a lot of information on this forum that can help you a lot. Use the accumulated wisdom of this board, with Tex in the lead, to help yourself get better. There is no reason to give up hope even though I understand why you would feel hopeless.
Jean
I am sorry that you still have no answer or solutions. I think it is very hard to come to the realization that doctors are often very ignorant about some medical matters and not only do not have the answers but might even be giving bad advice. The good news is that there is a lot of information on this forum that can help you a lot. Use the accumulated wisdom of this board, with Tex in the lead, to help yourself get better. There is no reason to give up hope even though I understand why you would feel hopeless.
Jean
Hi,
Thanks everyone, I'm feeling really down. I can accept that I have a lifetime disease to deal with ,I don't even think he is sure its MC anymore but to tell me I may just have to live with going to the bathroom all day Im not ready to want to live like that.
He did mention that he might let me try a drug called lotronex (sp) I looked it up sounds delightful Im desperate so I will probably try it if he gives me a script.
Sorry just can't be positive anymore
K
Thanks everyone, I'm feeling really down. I can accept that I have a lifetime disease to deal with ,I don't even think he is sure its MC anymore but to tell me I may just have to live with going to the bathroom all day Im not ready to want to live like that.
He did mention that he might let me try a drug called lotronex (sp) I looked it up sounds delightful Im desperate so I will probably try it if he gives me a script.
Sorry just can't be positive anymore
K
Kitty,
Please go for that second opinion. Get copies of every test and lab result you've had, write down your questions, take your poop and food log, make sure you'll have at least 45 minutes for your appt and go in 'gunning for bear'.
I agree with Brandy's idea of telling the members here what state you live in and I'm sure there are members who can suggest a Dr. or hospital program for you. That's what we are here for.
You are not alone in this.
Carol
Please go for that second opinion. Get copies of every test and lab result you've had, write down your questions, take your poop and food log, make sure you'll have at least 45 minutes for your appt and go in 'gunning for bear'.
I agree with Brandy's idea of telling the members here what state you live in and I'm sure there are members who can suggest a Dr. or hospital program for you. That's what we are here for.
You are not alone in this.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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wonderwoman
- Rockhopper Penguin
- Posts: 574
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- Location: Sun City, AZ
Kitty, I agree with Carol. Go for the second opinion, don't ever give up. It's ok to be sad and angry but always keep moving forward. I spent about 4 1/2 years floundering on my own and then found this forum. It's been a life saver. I've got a long ways to go but there's hope knowing that there are others here who can help and really understand.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Kitty
I can empathise was a confusing and frustrating few months you have had.
Although an exact diagnosis would seem to be a great solution, looking at the differences amongst the group here, even with a MC diagnosis there have been quite a few people that spent considerable time and quite a bit of work to figure out their MC Management Plan.
And like Tex mentioned, even with gut removal the immune system and inflammation issues can continue. My suggestion at this point is to listen to your body, it will provide you quite a bit of information and in some cases be more accurate than some tests. For any of the IBD’s there are quite a few similarities for treatments.
Gluten and Dairy free works for majority and is recommended for most IBD’s and IBS
If you are having D, it means you intestines are inflamed, figure out your low inflammation safe meal and make it the basis of your eating plan until the D stops.
Listening to your body and keeping a food diary you can figure out the ingredients that are mildly reactive to and the ones you are highly reactive to.
This works for things like GERD as well.
At this stage IMO, ‘best bang for your buck’ to help the body is VIt D3, it will help with so many of the issues, there are only a couple of people here that didn’t get good success out of Vit D3 supplement for a variety of symptoms.
It would be nice to have the diagnosis, but given that has not been easy to come by, you have been given the task to figure out the mystery (insert mission impossible music here….) your mission should you choose to accept it (well the sucky part is, you don’t get a choice) is to get your body well again…..
And remember, you are not alone on this mission.
I can empathise was a confusing and frustrating few months you have had.
Although an exact diagnosis would seem to be a great solution, looking at the differences amongst the group here, even with a MC diagnosis there have been quite a few people that spent considerable time and quite a bit of work to figure out their MC Management Plan.
And like Tex mentioned, even with gut removal the immune system and inflammation issues can continue. My suggestion at this point is to listen to your body, it will provide you quite a bit of information and in some cases be more accurate than some tests. For any of the IBD’s there are quite a few similarities for treatments.
Gluten and Dairy free works for majority and is recommended for most IBD’s and IBS
If you are having D, it means you intestines are inflamed, figure out your low inflammation safe meal and make it the basis of your eating plan until the D stops.
Listening to your body and keeping a food diary you can figure out the ingredients that are mildly reactive to and the ones you are highly reactive to.
This works for things like GERD as well.
At this stage IMO, ‘best bang for your buck’ to help the body is VIt D3, it will help with so many of the issues, there are only a couple of people here that didn’t get good success out of Vit D3 supplement for a variety of symptoms.
It would be nice to have the diagnosis, but given that has not been easy to come by, you have been given the task to figure out the mystery (insert mission impossible music here….) your mission should you choose to accept it (well the sucky part is, you don’t get a choice) is to get your body well again…..
And remember, you are not alone on this mission.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Kitty, I can understand you feeling down. It is hard to come to terms with a lifelong disease and also to have to make sudden changes in your diet and social life. Like you I am dealing with crohns and MC and to be honest it makes little difference whether it is Crohns or MC or UC....they are all IBDs and will be sensitive to diet.
I was hoping that I could deal with these conditions with meds alone, but I quickly found out that for me it requires meds and diet and the diet has proven time and time again to be the most important part of my treatment. I have found early on to be frustrating and it has taken time to fine tune my diet. Like I mentioned earlier, think of this like introducing a baby to new foods, introduce one at a time slowly and see how it works out, this is no different.
If your doc recommends meds, only you can judge if they are helpful. For now I would take them while honestly pursuing addressing your diet, one without the other can be almost useless.
I know this is frustrating for you, just about everyone here has been through this same frustrations and we can understand where you are at. The good news Kitty is that you can get your life back. It will not be the same as before, but it will be manageable. I still have bad days, but they are few and far between.
Hang in there Kitty, this is the early phase where you are still coming to terms with all of these life changing events, this is not easy, but you can make it through this, take if one step at a time, one food item at a time. Use the meds that help you and work your way towards wellness. You have a caring family here that will be here day or night to answer your questions and understands what you are dealing with. There is nothing wrong with a good cry now and then, it does help...
Take care kitty
I was hoping that I could deal with these conditions with meds alone, but I quickly found out that for me it requires meds and diet and the diet has proven time and time again to be the most important part of my treatment. I have found early on to be frustrating and it has taken time to fine tune my diet. Like I mentioned earlier, think of this like introducing a baby to new foods, introduce one at a time slowly and see how it works out, this is no different.
If your doc recommends meds, only you can judge if they are helpful. For now I would take them while honestly pursuing addressing your diet, one without the other can be almost useless.
I know this is frustrating for you, just about everyone here has been through this same frustrations and we can understand where you are at. The good news Kitty is that you can get your life back. It will not be the same as before, but it will be manageable. I still have bad days, but they are few and far between.
Hang in there Kitty, this is the early phase where you are still coming to terms with all of these life changing events, this is not easy, but you can make it through this, take if one step at a time, one food item at a time. Use the meds that help you and work your way towards wellness. You have a caring family here that will be here day or night to answer your questions and understands what you are dealing with. There is nothing wrong with a good cry now and then, it does help...
Take care kitty
Joe