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Hi,
I guess the entocort is not working for me but I did feel I was getting some control and most BM's were Norms. The change has been 2 or 3 times now I wake up in the middle of the night with the D.
Last night I had horrible pain finally started going around 1am some very normal some water, after 5 BM's I fell back to sleep. Now this AM I'm having some more BM's but this time there is bloody muscus, I have NEVER had this before
I'm scared what is going on now. My GI isn't in til Tuesday.
Please advise is this just another part of this horrible disease.
Thank you
KK
Help please very scared
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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I am just a newbie like you but I wanted to reply just so you know someone is listening. I am sure more knowledgeable people will reply to you also. My understanding of MC is that bleeding is not part of the diagnosis. Even though your doctor will not be in until Tuesday you could still call and talk to someone and ask them what you should do.
Jean
Jean
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MaggieRedwings
- King Penguin
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi kitty, I'm sorry to hear that you are having a rough time right now. Im not sure how long you have been taking the entocort, but it does take a while to take full effect. I know in my case and in many cases here it takes a couple of weeks to build up enough to calm things down
The presence of mucous is a sign of inflammation which is no surprise especially where you are now. The sign of some blood could be as simple as just irritation of hemorrhoids due to all of the D you are experiencng right now, but I would certainly let your doctor know of these symtoms.
I have not had a chance to look at your earlier posts yet, have you addressed the dietary side as well in removing gluten and possibly soy and dairy?? Additionally you should remove any citrus, acidic foods as well as ALL raw fruits and veggies. Eat only well cooked foods. You should go back to a simple diet, much like you would feed an infant for right now. The goal is to settle things down by removing potential irritants while giving the entocort time to work.
I know now is the scary time, but rest assured many of us have been down this path and with the advice here and medications as needed things settle down and you will start to feel better.
I'm guessing you have had a colonoscopy, did your doctor discuss any findings with you yet??
Hang in there Kitty....it does get better.
Take care
The presence of mucous is a sign of inflammation which is no surprise especially where you are now. The sign of some blood could be as simple as just irritation of hemorrhoids due to all of the D you are experiencng right now, but I would certainly let your doctor know of these symtoms.
I have not had a chance to look at your earlier posts yet, have you addressed the dietary side as well in removing gluten and possibly soy and dairy?? Additionally you should remove any citrus, acidic foods as well as ALL raw fruits and veggies. Eat only well cooked foods. You should go back to a simple diet, much like you would feed an infant for right now. The goal is to settle things down by removing potential irritants while giving the entocort time to work.
I know now is the scary time, but rest assured many of us have been down this path and with the advice here and medications as needed things settle down and you will start to feel better.
I'm guessing you have had a colonoscopy, did your doctor discuss any findings with you yet??
Hang in there Kitty....it does get better.
Take care
Joe
Hi Kitty,
The sight of blood in the toilet bowl is always unnerving, but it's something that is not uncommon with MC. Since you've almost surely had a fairly recent colonoscopy, if anything such as cancer were present, that would have been obvious during the exam, so you can rule that out.
With this disease, partially-digested food can sometimes be very caustic, and very irritating. Areas of the intestines, and the rectum and anus, can also become very inflamed. When that happens, not only is the mucosa and the underlying muscle inflamed, but virtually everything else, including blood vessels, also become inflamed. Inflamed tissue, (including blood vessels), swell, and become more vulnerable to physical damage. When we have repeated BMS, (even though it might be mostly liquid), the repeated exposure to caustic streams of partially-digested food, can be so abrasive as to physically tear vascular walls, resulting in bleeding. That happened to me on numerous occasions, during the worst episodes of D.
That said, if your symptoms are becoming worse, it could be because you have developed a C. diff infection. C. diff tends to cause D that suddenly becomes more severe, with severe cramping, and bleeding is possible. I would suggest that you call your doctor, when she or he returns tomorrow, describe your symptoms, and the two of you can decide whether to do a culture test for C. diff, or rule out hemorrhoids as the source of the problem, or both. You might have to repeat the culture test a couple of times if the first result or two is negative, because a C. diff infection can sometimes be difficult to diagnose.
The Entocort certainly doesn't seem to be helping at all, but if a C. diff infection has developed, it wouldn't be effective at all, at controlling the infection. Good luck with this, and please keep us posted.
Tex
The sight of blood in the toilet bowl is always unnerving, but it's something that is not uncommon with MC. Since you've almost surely had a fairly recent colonoscopy, if anything such as cancer were present, that would have been obvious during the exam, so you can rule that out.
With this disease, partially-digested food can sometimes be very caustic, and very irritating. Areas of the intestines, and the rectum and anus, can also become very inflamed. When that happens, not only is the mucosa and the underlying muscle inflamed, but virtually everything else, including blood vessels, also become inflamed. Inflamed tissue, (including blood vessels), swell, and become more vulnerable to physical damage. When we have repeated BMS, (even though it might be mostly liquid), the repeated exposure to caustic streams of partially-digested food, can be so abrasive as to physically tear vascular walls, resulting in bleeding. That happened to me on numerous occasions, during the worst episodes of D.
That said, if your symptoms are becoming worse, it could be because you have developed a C. diff infection. C. diff tends to cause D that suddenly becomes more severe, with severe cramping, and bleeding is possible. I would suggest that you call your doctor, when she or he returns tomorrow, describe your symptoms, and the two of you can decide whether to do a culture test for C. diff, or rule out hemorrhoids as the source of the problem, or both. You might have to repeat the culture test a couple of times if the first result or two is negative, because a C. diff infection can sometimes be difficult to diagnose.
The Entocort certainly doesn't seem to be helping at all, but if a C. diff infection has developed, it wouldn't be effective at all, at controlling the infection. Good luck with this, and please keep us posted.
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.
Thank you all for the replies,
I don't know how any of you go on day to day Im finding it hard.
Your answers have calmed me First yes I do have what the doc called active hemorrhoids. My colonoscopy and sig. were done in the past 6 months. Undigested food was mentioned I ate a tomato based food yesterday so maybe that is what Im seeing. The mucus is really something new only the past few weeks.
I'm not having a problem with being dairy free but gluten free has been a challenge because anything that ends in "gum" seems to increase the D and many gluten products have these added.
I have been on Entocort since end of February but because of foul ups with my insurance had to cut back on the doctors 9mg to some days only 3mgs. The insurance problem seems to be corrected so this week I will go back to
9mg a day
On the entocort (even the lesser dose) I did see a decrease in D from 11, - 15 per day to 6 or 7 but it seems every few weeks I have a bad day going back up to 13 and beyond. These past two weeks I started to see mucus and also experienced nightime D something I had not had before
Thank you again for helping it's just starting to depress me so I want my life back
KK
I don't know how any of you go on day to day Im finding it hard.
Your answers have calmed me First yes I do have what the doc called active hemorrhoids. My colonoscopy and sig. were done in the past 6 months. Undigested food was mentioned I ate a tomato based food yesterday so maybe that is what Im seeing. The mucus is really something new only the past few weeks.
I'm not having a problem with being dairy free but gluten free has been a challenge because anything that ends in "gum" seems to increase the D and many gluten products have these added.
I have been on Entocort since end of February but because of foul ups with my insurance had to cut back on the doctors 9mg to some days only 3mgs. The insurance problem seems to be corrected so this week I will go back to
9mg a day
On the entocort (even the lesser dose) I did see a decrease in D from 11, - 15 per day to 6 or 7 but it seems every few weeks I have a bad day going back up to 13 and beyond. These past two weeks I started to see mucus and also experienced nightime D something I had not had before
Thank you again for helping it's just starting to depress me so I want my life back
KK
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Kitty,
I'm so sorry! It can really be a nightmare sometimes, but it does get better. Many people here were exactly where you are, and they're in remission now. The first few months are the hardest, I think, because you're still trying to figure out what you can and can't eat, and your body is just starting to heal, so you still react to everything. Don't give up! You can do this!
I'm so sorry! It can really be a nightmare sometimes, but it does get better. Many people here were exactly where you are, and they're in remission now. The first few months are the hardest, I think, because you're still trying to figure out what you can and can't eat, and your body is just starting to heal, so you still react to everything. Don't give up! You can do this!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Once Again thank you I don't know who to turn to when I feel this bad. I'm sure if I expressed how sad Iam, at the way my life is going because of this D, to my doctor he would not understand. I just want to be able to go out with my family without planing what should I eat and where is the bathroom. My poor husband just keeps asking do you feel better, I can't get him to understand it's not a virus that will go away in 24 hrs. So far I know I cannot eat anything the has the word lite in it. Nothing with Fiber no wheat or other grains like barley, oat etc. I have found no vegetable cooked or not that I can tolerate. Chicken seems ok and red meat (which I don't eat a lot of) so far is ok. Sometimes if I really need to be somewhere I just don't eat for the day. Since I'am overweight it's not a big deal weight wise. I was never one for sweets or chocolate but suddenly I crave it (the entocort????)
This nightmare has been going on for 18 months with the MC diagnose 3 months ago. Does anyone think the chamomile tea I've been drinking (one cup a day for about 12 months) is making things worse. It's just so nice to be able to have something hot in the mornings.
Forgive me I'm rambling I spend hours going over my food journal trying to help myself and I'm just done in no way out.
Ok pity party on hold.. eating white rice (plain) 1/2 cup at a time we shall see.
Love,
K
This nightmare has been going on for 18 months with the MC diagnose 3 months ago. Does anyone think the chamomile tea I've been drinking (one cup a day for about 12 months) is making things worse. It's just so nice to be able to have something hot in the mornings.
Forgive me I'm rambling I spend hours going over my food journal trying to help myself and I'm just done in no way out.
Ok pity party on hold.. eating white rice (plain) 1/2 cup at a time we shall see.
Love,
K
Hi Kitty,
Yes it does get better. It took me awhile to heal. I have no experience w/ chamomile but I had 2 cups of hot tea (black) a day thru all of this. It is like you need some kind of vice. Yes everyone thinks it is something you'll get over kind of like the flu in a week and I finally started telling people it is a 1-2 year healing process to get friends/family off my back. Have you tried eating soy free tuna out of the can and also the foil packs of salmon to add to your protein mix? I'm not a protein liker but I"m forcing myself to eat protein 3x per day.
Hang in there, you'll get through it. Brandy
Yes it does get better. It took me awhile to heal. I have no experience w/ chamomile but I had 2 cups of hot tea (black) a day thru all of this. It is like you need some kind of vice. Yes everyone thinks it is something you'll get over kind of like the flu in a week and I finally started telling people it is a 1-2 year healing process to get friends/family off my back. Have you tried eating soy free tuna out of the can and also the foil packs of salmon to add to your protein mix? I'm not a protein liker but I"m forcing myself to eat protein 3x per day.
Hang in there, you'll get through it. Brandy
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Kitty first of all your among friends here and we have all been where you are at now and it is not easy. Being scared is normal...the good news Kitty is things will get better. Think of this as a matter of a few steps
1. diagnosis
2. Treatment, both medicines and most importantly diet
3. Fine tuning and getting better
MC is not something that will go away in 24 hours it is something you will deal with from now on, but...it's not too bad once you get the hang of it.
You are between steps one and two, where you have a diagnosis and are just coming to terms with these challenges and changes. For the moment Kitty go back to just the basics, simply cooked chicken with white rice and something like very well cooked carrots or mashed potatos. If you think any of these foods sound bad avoid them. When I was first diagnosed I had to learn how to eat simply again...no eating out at a restaurant for a while, cooking foods from whole ingredients, nothing packaged or prepared in a factory, there is just too much chance for problems.
Early on for me it was chicken, white rice and mashed potatoes without butter. I used just some salt and a drizzle of olive oil. I then after a month or so slowly added back things like fish and other well cooked vegetables. If you start very simply and slowly add back a food one at a time you can keep a food journal and then learn what your body will tolerate right now. It does get better, just slowly. Listen to your body and GO SLOW. This will take a while but you will get better Kitty. Be sure to avoid all raw fruits and veggies and avoid citrus juices for a while
As I'm divorced I can't give too much advice, but I would recommend being open and honest with what you can and cannot do, communication is key. One good thing for me that came out of all of this was me learning how to cook ( well sort of LOL). There are some great folks on this site and some great recipes that are safe and tasty.
One thing that helped me was to plan, I would start with making my meals ahead of time, I would cook enough on the weekend to eithier refrigerate or freeze for the week. This included lunches and dinners. I still do this and I'm about 2 years into dealing with MC.
Take a deep breath, relax and be sure to ask questions here, this is the best site around with some of the best people around...you can ask anything here and you will most likely get the answer you need. Start with a plan for foods and setup a diet than can work for you in your situation.
Hang in there a kitty and again welcome to the site.
1. diagnosis
2. Treatment, both medicines and most importantly diet
3. Fine tuning and getting better
MC is not something that will go away in 24 hours it is something you will deal with from now on, but...it's not too bad once you get the hang of it.
You are between steps one and two, where you have a diagnosis and are just coming to terms with these challenges and changes. For the moment Kitty go back to just the basics, simply cooked chicken with white rice and something like very well cooked carrots or mashed potatos. If you think any of these foods sound bad avoid them. When I was first diagnosed I had to learn how to eat simply again...no eating out at a restaurant for a while, cooking foods from whole ingredients, nothing packaged or prepared in a factory, there is just too much chance for problems.
Early on for me it was chicken, white rice and mashed potatoes without butter. I used just some salt and a drizzle of olive oil. I then after a month or so slowly added back things like fish and other well cooked vegetables. If you start very simply and slowly add back a food one at a time you can keep a food journal and then learn what your body will tolerate right now. It does get better, just slowly. Listen to your body and GO SLOW. This will take a while but you will get better Kitty. Be sure to avoid all raw fruits and veggies and avoid citrus juices for a while
As I'm divorced I can't give too much advice, but I would recommend being open and honest with what you can and cannot do, communication is key. One good thing for me that came out of all of this was me learning how to cook ( well sort of LOL). There are some great folks on this site and some great recipes that are safe and tasty.
One thing that helped me was to plan, I would start with making my meals ahead of time, I would cook enough on the weekend to eithier refrigerate or freeze for the week. This included lunches and dinners. I still do this and I'm about 2 years into dealing with MC.
Take a deep breath, relax and be sure to ask questions here, this is the best site around with some of the best people around...you can ask anything here and you will most likely get the answer you need. Start with a plan for foods and setup a diet than can work for you in your situation.
Hang in there a kitty and again welcome to the site.
Joe
Kitty,
You have come to the right place to get help and support. The people here are wonderful. They will give advice, help you work things out, and lift you up when you are down.
They also will talk fluent poop to you. And that is the most comforting of all!
Everyone is scared, and everyone is different in the course of the disease. The things you need to remember - eating simply will be your routine for life. Knowing where the toilets are? Something you will make a habit forever.
You will have to be in tune with YOUR body and try to listen to each little twitch and gurgle. You will learn to interpret them and know what is causing them.
I have never been good at keeping a food diary, but many people have found doing so very helpful.
Vegetables not agreeing with you? Don't eat them till some healing takes place.
There will be a lot of ups and downs along the way. You can come here to get help when you need it.
You have come to the right place to get help and support. The people here are wonderful. They will give advice, help you work things out, and lift you up when you are down.
They also will talk fluent poop to you. And that is the most comforting of all!
Everyone is scared, and everyone is different in the course of the disease. The things you need to remember - eating simply will be your routine for life. Knowing where the toilets are? Something you will make a habit forever.
You will have to be in tune with YOUR body and try to listen to each little twitch and gurgle. You will learn to interpret them and know what is causing them.
I have never been good at keeping a food diary, but many people have found doing so very helpful.
Vegetables not agreeing with you? Don't eat them till some healing takes place.
There will be a lot of ups and downs along the way. You can come here to get help when you need it.
-
draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Kitty,
I will comment on the spouse thing since I have one...my husband was initially concerned that my eating GF was going to be expensive, but since I rarely use packaged GF foods, and I cook just about everything I eat, it hasn't turned out that way. I have had to educate my family on things like cross-contamination (there are certain foods, labelled "MOM," that are off-limits to the non-GF). My husband and oldest daughter like to tweak recipes for me so I can eat what they cook, but I have to keep an eye on them because they don't always think about all the ingredients I can't have (nor should they; that's my job!). My husband has been very understanding, but I try not to overwhelm him with information. We have a code of sorts for those days that I'm just not up to par: "Today is not a good tummy day." Then he knows, without my going into detail, that I'm not feeling well. I discovered early on that it was important to let him know I wasn't upset with him for something, or in a bad mood--I was just having a rough day communing with the bathroom, and it had nothing to do with him.
Chicken and rice were my standby as well. Chicken broth with some rice noodles is pretty good, too. And I wouldn't think the chamomile tea was a problem--that's about the mildest herb you can get, I think. Some of us have problems with peppermint or real tea, but I don't think I've heard of anyone having a reaction to chamomile.
Sometimes you just need to have a good cry about all this so you can get up and face it again. (Works for me!
)
I will comment on the spouse thing since I have one...my husband was initially concerned that my eating GF was going to be expensive, but since I rarely use packaged GF foods, and I cook just about everything I eat, it hasn't turned out that way. I have had to educate my family on things like cross-contamination (there are certain foods, labelled "MOM," that are off-limits to the non-GF). My husband and oldest daughter like to tweak recipes for me so I can eat what they cook, but I have to keep an eye on them because they don't always think about all the ingredients I can't have (nor should they; that's my job!). My husband has been very understanding, but I try not to overwhelm him with information. We have a code of sorts for those days that I'm just not up to par: "Today is not a good tummy day." Then he knows, without my going into detail, that I'm not feeling well. I discovered early on that it was important to let him know I wasn't upset with him for something, or in a bad mood--I was just having a rough day communing with the bathroom, and it had nothing to do with him.
Chicken and rice were my standby as well. Chicken broth with some rice noodles is pretty good, too. And I wouldn't think the chamomile tea was a problem--that's about the mildest herb you can get, I think. Some of us have problems with peppermint or real tea, but I don't think I've heard of anyone having a reaction to chamomile.
Sometimes you just need to have a good cry about all this so you can get up and face it again. (Works for me!
)Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Thank you one and all for talking me down lol. I placed another post with a question thought it would be easier that way then adding it on to this one.
I go for days eating just rice and chicken and then my LOVE for food gets the better of me looking back on my food journal I certainly did eat some questionable things prior to Sundays attack. (GF fat free marshmallows that did not have any of the "gums" listed in it but now I have doubts for and a meal out that I actually said out loud this look greasy for ordering it dry) but of course I ate it.
I think I'm still in big denial that I have this disease. I still keep thinking they missed something that is causing the D and since, so far, I have not responded to any of their miracle drugs (entocort etc) Did you all go through a period of denial.
Thank you all
Hugs,
KK
I go for days eating just rice and chicken and then my LOVE for food gets the better of me looking back on my food journal I certainly did eat some questionable things prior to Sundays attack. (GF fat free marshmallows that did not have any of the "gums" listed in it but now I have doubts for and a meal out that I actually said out loud this look greasy for ordering it dry) but of course I ate it.
I think I'm still in big denial that I have this disease. I still keep thinking they missed something that is causing the D and since, so far, I have not responded to any of their miracle drugs (entocort etc) Did you all go through a period of denial.
Thank you all
Hugs,
KK