What wildwind said is entirely true for me as well. I have been off vanco for about 6 1/2 weeks and am still taking my diet very, very slowly. I started introducing vegetables one by one - cooked, not raw. Broccoli did not agree, so I have not gone back to it. I can eat artichoke, soup with potatoes, carrots and celery that I puree, asparagus, avocado, and split pea soup also pureed. The only fruit I am eating is applesauce or baked apple right now. I have not tried dairy except for some butter as I became completely lactose intolerant after my c diff. I plan to introduce that last and will work on fruit next - maybe a few pieces of kiwi or watermelon, as these dissolve kind of easily. As Wildwind said, it is different for everyone. Introduce one new thing a day and see how it goes. Some people write down what they eat and if they have a problem then they can check to see if there is a pattern.
I had a stool transplant, and in spite of that, was told that it would take my intestines at least 6 months to heal and probably even more as I've had it for so long. When I first had it and did not realize what it was, it did get better on its own until I took antibiotics again, but even then I could not eat certain things for about 8 or 9 months if I recall. After taking vanco it destroyed my system even more and that is when I really got the food intolerances. Between the medication and the infection itself, your intestines have been through a lot and need time to heal.
Newbie...depressed, anxious, mad...etc
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JenniferH
- Regular Contributor
- Posts: 324
- Joined: Mon Feb 22, 2010 6:31 pm
So food can actually irritate colitis? Can it cause the bleeding & mucus?
I remember eating guacamole, made with real avocados, and this caused some issues for me. I'm actually allergic to avocados, but I love them!
I dont want to irritate people on this board with my questions, I'm sorry. But the Docs aren't giving me any answers. I dont know where to go from here. I keep leaving messages for the Doc. If I need to wait this out, thats fine, I will wait. But the Doc hasnt told me that. The next available appointment isnt until June. I'm just so confused.
I remember eating guacamole, made with real avocados, and this caused some issues for me. I'm actually allergic to avocados, but I love them!
I dont want to irritate people on this board with my questions, I'm sorry. But the Docs aren't giving me any answers. I dont know where to go from here. I keep leaving messages for the Doc. If I need to wait this out, thats fine, I will wait. But the Doc hasnt told me that. The next available appointment isnt until June. I'm just so confused.
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beth22
- Long Time Contributor
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- Joined: Tue Apr 07, 2009 2:23 pm
There's ulcerative colitis, which causes bleeding and mucus, but you say that when you had your colonoscopy they tested you for different things. Did they do any biopsies - that is pretty much the only conclusive way to know if you have colitis if they don't see inflammation. I think it also tells them if there is Crohn's. But, yes, food can definitely aggravate the colitis. If you have a small intestine problem, which is what I got after c diff, foods affect you even more because that is where the digestion takes place. By the time it gets to the colon it is already pretty much digested, although can still cause problems. Maybe keeping a log of what you eat every day for a while would help you to pinpoint better what foods aggravate.
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JenniferH
- Regular Contributor
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- Joined: Mon Feb 22, 2010 6:31 pm
Beth,
The nurse briefly touched on what they tested for. Something called micro organisms? Was negative, negative for cancer, they removed something that looked like a polyp, but turns out it wasn't a polyp. I asked her if I was positive for C diff, and she referred back to my stool tests. I told her I already knew those were negative, but did he find anything during the colonoscopy? And she wasnt sure. She did state that I didnt have any active inflamation, and I think thats a good thing?
I remember the day of the colonoscopy the Doc said I had mild colitis, and it was effecting the rectum, and the large intestine. Similar to proctitis I guess....I'm waiting for his call still, today.
The nurse briefly touched on what they tested for. Something called micro organisms? Was negative, negative for cancer, they removed something that looked like a polyp, but turns out it wasn't a polyp. I asked her if I was positive for C diff, and she referred back to my stool tests. I told her I already knew those were negative, but did he find anything during the colonoscopy? And she wasnt sure. She did state that I didnt have any active inflamation, and I think thats a good thing?
I remember the day of the colonoscopy the Doc said I had mild colitis, and it was effecting the rectum, and the large intestine. Similar to proctitis I guess....I'm waiting for his call still, today.
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beth22
- Long Time Contributor
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- Joined: Tue Apr 07, 2009 2:23 pm
When they removed the tissue that they thought was a polyp, then they probably sent it to be tested. Perhaps those tests indicated what type of colitis you have. I know they took biopsies on me during a sigmoidoscopy and tested for microscopic and collagenous colitis, which I did not have. Ask your doctor if you were specifically tested to see which type of colitis you had. There are medications for colitis - maybe you need to be on one. Ask your doctor what he would suggest at this point.
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wildwind
- Contributor
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- Joined: Thu Nov 12, 2009 1:07 am
Dealing with Doctors, post CD colitis, diet and more...
I'm not an expert on colitis but my understanding is that the kind of damage caused by the CD spores causes colitis in many cases. I'm sure someone will be able to explain this much better, and if you search this site and others on the web they can describe colitis much better than I can.
What I know is that the CD spores actually tear away at the lining of our colons (that is what causes what you can read in TMI). Colitis is similar in nature, the way my doctor (regular, not GI) explained colitis is that it is like road rash on your knee, elbow, whatever if you fall and or slide on asphalt...a skinned knee if you will. Anyone who has skinned their knee knows how long it takes to heal and if treated properly it still takes some time to heal. Now picture that in your tummy. And your tummy doesn't get exposed to air to dry out to, scab up and heal...quite the contrary. So the CD spores start the damage and the colitis is what is left until the area is healed. There is a lot of leaway in this senario...how much damage the CD did, how many places in your colon, the depth of the damage, and yes, what you pass through the area while it is trying to heal.
The short answer is Y E S, what you put through your tummy after CD will make you feel better or worse...but it is not the same for every person. That is why doctors seem so noncommital because there are so many variations that can occur. What causes me agony, may only be a flea bite to you. That doesn't make me a baby, nor you a hero, it just is what it is. I'm ok, your ok.
We take relapses very seriously here, but we also learn to be very cautious. Not every terribly painful D day is or leads to a relapse, sometimes even if it is 'just like it was when....' Several factors will elevate your condition from 'wait and see' to 'go to the ER now'. Obviously on the latter, it will only be our non-medical opinion. But there are some 'warning signs'; temperature above 102, dehydration, extreme weakness to the point where you cannot sit, stand, or walk. These should not be ignored and require a trip to the ER (probably, again, I am not a doctor), this is where your doctor wants you to go if you are this serious, don't expect to wait till the doctor's office opens and expect him to want to see you with these symptoms...he/she will most likely want you to be seen by the ER, it would be wise to call their on call doc, but most likely if you are suffering any of those symptoms, that will be their advice.
There is much we can do to help ourselves once we get to the point where we have been treated, examined, determined to be free from CD by testing or by colonoscopy etc. Of course relapses can happen, mine were 5 - 10 days after completion of abx. They were always the extreme case above and required a trip to the ER, but as you have read, many have milder symtoms, but they still treat them the same way, they back off on their diet, and drink, drink, drink...to stay hydrated. They watch, and worry (rightfully so) and pray that it does not lead to full blown CD. Sometimes it is a relapse, sometimes not, sometimes they test negative several times before they get the positive result. Some docs treat the symptoms of a patient that has demonstrated that they are aware of how CD effects them due to their history, not the test result. Other docs won't treat unless they receive a positive test result. In many of these cases, they do have to wait for that appointment, but they also know if the severe symptoms kick in, they don't wait and do go to the ER.
In your case, I would stay away from the avocado's, maybe next month, or year you can eat them again, maybe not...time will tell. Stay hydrated, find a calming place to be, in your mind or a craft, reading, praying, hobby. When you are in that place, try not to let your thoughts drift to the 'what if's'. Deal with the 'what if'' only when they become reality. Wait for the appointment if you can, start a diary of diet and symptoms so that you will have specific information for your doctor. Most of us have found that if we go to our appointments armed with specifics, triggers, patterns, location and type of pain, etc the doctor's can target our treatment. It is ok to be upset about CD but try to be calm with the doc, or bring someone who has witnessed your illness if you cannot be calm. If we are too 'dramatic' (not judging, because no-one cries as easily as I do) the doctors shut down and cannot tell what is drama and what is real, then we fight the 'oh your exagerating' when we most certainly are not. Sometimes we only get 15 minutes with our docs so let's make the most out of our time, and help them to help us.
Sorry this is such a long post, but these are issues I struggled with, perhaps they may help you or someone else. These are also issues that get all muddled up in our minds when we just want help. It is not because the medical community doesn't care, there is just much they don't know, we can help educate them to help us. And perhaps encourage them to consider alternative options for treatments, no matter the red tape they must go through. Thanks for taking time to read to the end :)
What I know is that the CD spores actually tear away at the lining of our colons (that is what causes what you can read in TMI). Colitis is similar in nature, the way my doctor (regular, not GI) explained colitis is that it is like road rash on your knee, elbow, whatever if you fall and or slide on asphalt...a skinned knee if you will. Anyone who has skinned their knee knows how long it takes to heal and if treated properly it still takes some time to heal. Now picture that in your tummy. And your tummy doesn't get exposed to air to dry out to, scab up and heal...quite the contrary. So the CD spores start the damage and the colitis is what is left until the area is healed. There is a lot of leaway in this senario...how much damage the CD did, how many places in your colon, the depth of the damage, and yes, what you pass through the area while it is trying to heal.
The short answer is Y E S, what you put through your tummy after CD will make you feel better or worse...but it is not the same for every person. That is why doctors seem so noncommital because there are so many variations that can occur. What causes me agony, may only be a flea bite to you. That doesn't make me a baby, nor you a hero, it just is what it is. I'm ok, your ok.
We take relapses very seriously here, but we also learn to be very cautious. Not every terribly painful D day is or leads to a relapse, sometimes even if it is 'just like it was when....' Several factors will elevate your condition from 'wait and see' to 'go to the ER now'. Obviously on the latter, it will only be our non-medical opinion. But there are some 'warning signs'; temperature above 102, dehydration, extreme weakness to the point where you cannot sit, stand, or walk. These should not be ignored and require a trip to the ER (probably, again, I am not a doctor), this is where your doctor wants you to go if you are this serious, don't expect to wait till the doctor's office opens and expect him to want to see you with these symptoms...he/she will most likely want you to be seen by the ER, it would be wise to call their on call doc, but most likely if you are suffering any of those symptoms, that will be their advice.
There is much we can do to help ourselves once we get to the point where we have been treated, examined, determined to be free from CD by testing or by colonoscopy etc. Of course relapses can happen, mine were 5 - 10 days after completion of abx. They were always the extreme case above and required a trip to the ER, but as you have read, many have milder symtoms, but they still treat them the same way, they back off on their diet, and drink, drink, drink...to stay hydrated. They watch, and worry (rightfully so) and pray that it does not lead to full blown CD. Sometimes it is a relapse, sometimes not, sometimes they test negative several times before they get the positive result. Some docs treat the symptoms of a patient that has demonstrated that they are aware of how CD effects them due to their history, not the test result. Other docs won't treat unless they receive a positive test result. In many of these cases, they do have to wait for that appointment, but they also know if the severe symptoms kick in, they don't wait and do go to the ER.
In your case, I would stay away from the avocado's, maybe next month, or year you can eat them again, maybe not...time will tell. Stay hydrated, find a calming place to be, in your mind or a craft, reading, praying, hobby. When you are in that place, try not to let your thoughts drift to the 'what if's'. Deal with the 'what if'' only when they become reality. Wait for the appointment if you can, start a diary of diet and symptoms so that you will have specific information for your doctor. Most of us have found that if we go to our appointments armed with specifics, triggers, patterns, location and type of pain, etc the doctor's can target our treatment. It is ok to be upset about CD but try to be calm with the doc, or bring someone who has witnessed your illness if you cannot be calm. If we are too 'dramatic' (not judging, because no-one cries as easily as I do) the doctors shut down and cannot tell what is drama and what is real, then we fight the 'oh your exagerating' when we most certainly are not. Sometimes we only get 15 minutes with our docs so let's make the most out of our time, and help them to help us.
Sorry this is such a long post, but these are issues I struggled with, perhaps they may help you or someone else. These are also issues that get all muddled up in our minds when we just want help. It is not because the medical community doesn't care, there is just much they don't know, we can help educate them to help us. And perhaps encourage them to consider alternative options for treatments, no matter the red tape they must go through. Thanks for taking time to read to the end :)
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JenniferH
- Regular Contributor
- Posts: 324
- Joined: Mon Feb 22, 2010 6:31 pm
Thank you Beth & WW,
Your posts do help! I'm sure I will keep referring back to them when I start to freak again. And I'll ask specifically what kind of colitis I do have.
It's the waiting that makes this so difficut. I want my life back!!
They say that I'm not contageous if I'm not having D, but what about the spores that we shed after going to the restroom?? I read that it only takes 2 spores to infect someone. That is the worst part, in my mind. Infecting someone else with this.
I spray clorox cleanup everytime I use the restroom. And I dont allow my children to use my bathroom. My Hubby still shares my bathroom, and it makes me nervous.
Yes, I'm a paranoid freak, but getting this out, and writing about it helps me cope.
Your posts do help! I'm sure I will keep referring back to them when I start to freak again. And I'll ask specifically what kind of colitis I do have.
It's the waiting that makes this so difficut. I want my life back!!
They say that I'm not contageous if I'm not having D, but what about the spores that we shed after going to the restroom?? I read that it only takes 2 spores to infect someone. That is the worst part, in my mind. Infecting someone else with this.
I spray clorox cleanup everytime I use the restroom. And I dont allow my children to use my bathroom. My Hubby still shares my bathroom, and it makes me nervous.
Yes, I'm a paranoid freak, but getting this out, and writing about it helps me cope.
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JenniferH
- Regular Contributor
- Posts: 324
- Joined: Mon Feb 22, 2010 6:31 pm
I just got off the phone with the Doc. He said that the biopsy's were negative for everything.
He feels that I'm in the healing process. But any B or D, and I am to call his office immediately. He wants me to ride this out, and see how I do. I feel better now that I have some answers.....And he also said I need to stick to a bland diet. You were all so right!
He feels that I'm in the healing process. But any B or D, and I am to call his office immediately. He wants me to ride this out, and see how I do. I feel better now that I have some answers.....And he also said I need to stick to a bland diet. You were all so right!
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wildwind
- Contributor
- Posts: 62
- Joined: Thu Nov 12, 2009 1:07 am
that is good news all around...keep reminding yourself that when your mind travels to the scary places :)
Many of us have lived (and firefighter works and lives) with our families and friends without infecting them. Keep telling yourself this...practice good hygiene, wash your hands after toilet and before cooking, use seat covers when out and about, etc. I too thought I would have to spend money on special products to kill the spores but I listened to the reasoning of others on this site and just used common sense, my husband was never infected. It is also important to know that most people have enough good bacteria to fight any incidental contact with the spores. The reason we are different are because our immune system most likely was weakened by our need for abx, then the abx indiscrimanently destroyed the bad bacteria (our infections) and our good bacteria (that would have killed the CD).
Now is the time to chill, you have good news, we will help by praying that you continue to heal. For now, this is your life, don't place value on your life by your health. Place your value in who you are and what you believe and those you love and who love you. Life is not money, or prestige, or superman health and strength. You are just taking a sabatical and it will be over when it is over. Live and love the life you have now with and without the symptoms of this awful CD. You will realize that when all of this is over, you will be much stronger for the trial.
Many of us have lived (and firefighter works and lives) with our families and friends without infecting them. Keep telling yourself this...practice good hygiene, wash your hands after toilet and before cooking, use seat covers when out and about, etc. I too thought I would have to spend money on special products to kill the spores but I listened to the reasoning of others on this site and just used common sense, my husband was never infected. It is also important to know that most people have enough good bacteria to fight any incidental contact with the spores. The reason we are different are because our immune system most likely was weakened by our need for abx, then the abx indiscrimanently destroyed the bad bacteria (our infections) and our good bacteria (that would have killed the CD).
Now is the time to chill, you have good news, we will help by praying that you continue to heal. For now, this is your life, don't place value on your life by your health. Place your value in who you are and what you believe and those you love and who love you. Life is not money, or prestige, or superman health and strength. You are just taking a sabatical and it will be over when it is over. Live and love the life you have now with and without the symptoms of this awful CD. You will realize that when all of this is over, you will be much stronger for the trial.
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