Hi everyone. Whenever I get worried healthwise- I also get confused. Maybe some of you could help me out a bit about my worries here. I'm still feeling sick. I'm not on any meds- ( after my sulphasalazine experience, I'm afraid to). I have an upper and lower GI coming up on Sept 14th, and in the meantime I've gone back to a strict SCD (diet). My worry is this- I seem to remember, way back, 10 years ago, when I was first diagnosed, I had lots of nausea (which I haven't had again until now), but I don't remember these crampy feelings just above my belly button with the nausea; Is this CC or is something worsened or really wrong? I'm worried and feel all mixed up. I've been having severe D since August 14th. I'm eating (SCD)very gingerly -like I'm afraid to eat since July 28 ( the day of the big pain), and have lost about 8 pounds- which isn't so good because I only weigh 105. I know I sound foolish- but I can't help it; ever since that unfamiliar severe pain while on the sulphasalazine, I've been worried; maybe some of you can help me get things in perspective.
Thankyou for your input
most sincerely,
Mia
still feeling bad and worried
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Mia, I don't remember if you have posted regarding the known intolerances you have. Have you done the Enterolab testing? If not, have you tried eliminating certain foods? Before I found this board and really understood the complications of MC, I too tried the SCD diet with little benefit. I later found out through Enterolab that I was casein intolerant and I know that diet relies on yogurt. No wonder I didn't have much luck with it. It takes a lot of time, trial, and error to determine what foods are bothering you. I have multisensitivities to gluten, dairy, soy, eggs, and yeast. I also react to chicken for some reason. I couldn't get into remission alone with the diet so I tried Entocort and found that I had no side effects from it and it enabled me to continue working and live a better quality of life. I was able to get off from it last year, but had another flare last Jan. and resumed taking it. I have now been off 2 months and am using diet alone to manage things. When you're in a flare, it's hard to know what you are reacting to because you react to everything. I know how you feel and the fear you experience when things feel out of control. I'm sure you'll find your way through all this with the help and advice of all those on this board. There are many ways to reach remission and you'll have to find the way you feel best about. Good luck and know that you are not alone and everyone is here to help you, JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
I'm afraid I can't comment too much about the pain since I seem to be one of the lucky ones and abdominal pain hasn't really been an issue with my MC. Nausea/vomiting was a BIG issue though. Lots of others here have had the pain though and it has been described in lots of different ways.
Hope you feel better soon.
Love, Shirley
Hope you feel better soon.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Mia,
I agree with what Jo Ann said. Also, I tried the SCD myself without any luck. I later found out I had a full dairy intolerance like Jo Ann, so I learned first-hand that the SCD doesn't always work for MCers. I'll bet anything that once you get into diet full-swing (maybe at least eliminating gluten and all dairy for now) that you will begin to see improvement. I will guess that the crampy feelings with the nausea are not anything serious to worry about. When we are severely and actively flaring, the GI tract can be inflamed from mouth to anus. Seriously.
How are you doing now? Better, I hope.
Love,
Polly
P.S. What kind of kitties do you have? We have a calico named "Chatty Cat". She is missing Rusty and even walked with my husband down the driveway today to get the paper - a job formerly held by Rusty.
I agree with what Jo Ann said. Also, I tried the SCD myself without any luck. I later found out I had a full dairy intolerance like Jo Ann, so I learned first-hand that the SCD doesn't always work for MCers. I'll bet anything that once you get into diet full-swing (maybe at least eliminating gluten and all dairy for now) that you will begin to see improvement. I will guess that the crampy feelings with the nausea are not anything serious to worry about. When we are severely and actively flaring, the GI tract can be inflamed from mouth to anus. Seriously.
How are you doing now? Better, I hope.
Love,
Polly
P.S. What kind of kitties do you have? We have a calico named "Chatty Cat". She is missing Rusty and even walked with my husband down the driveway today to get the paper - a job formerly held by Rusty.
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Thankyou JoAnn, Shirley, and Polly for answering. Jo Ann, I would love to try Enterolab testing, but just haven't coughed up the money yet. The closest I could get at this point was getting my doctor to do some blood work for allergies ( it came back showing a 'slight' elevation or 'reaction to some things, but they said it wasn't significant enough to proceed. Here in Canada, they of course use the usual tests- not like Enterolab. My doctor would agree to send me to an allergist, but I haven't made that leap yet, because I live in Northern BC- and unfortunately that would entail an expensive plain trip to Vancouver. I'm also not sure how much that would help. The SCD diet worked really well for me 10 years ago though- so maybe it will kick in soon. I hope.
Shirley, it always helps to hear when someone else has similar experiences.( Not that I want the other person to be nauseous or anything; but because then it's not something that should ring an alarm bell.) You know what my worried imaginings have been - that somehow I have scarring from inflammation and I have a stricture or partial blockage. Why I'm thinking that, I'm not sure, as I've had the big D ongoing for days and days and days. I wonder how much inflammation there actually is with Collagenous Colitis, and if what there is could lead to scarring. I don't know enough about it I think.
Polly, thanks for your reassurance. It really helps to hear it when I'm struggling to feel calmer about this most recent big flare. My kitties are 'shelter kitties' - we have always gotten our kitties from the local shelters ( and as I like to think; changed their poor little lives from desperate to wonderful- full of comfort and love). Animal welfare is very important to me. Why even a couple of years ago- I presented a 23 page research paper ( with pictures too) on the plight of many local animals to city council. I also researched animal welfare bylaws in other cities and wrote up an example of a humane animal bylaw. Happily the city accepted it and instated a humane animal bylaw for our city. Would you believe I actually got some 'mind your own business' type letters from some people after that. Who cares about them - someone has to speak out for the animals. I am so sorry about you losing your sweet companion and friend Polly. It's so hard. When we lost our last kitty cat - it took me quite awhile to get over it. I'd come home, and when opening the door, I'd look for my kitty even though I knew he wasn't there anymore. It was almost as if my heart and eyes kept looking for him even when my head knew better. It just sucks. Be good to yourself while you go through this loss.
Love Mia
Shirley, it always helps to hear when someone else has similar experiences.( Not that I want the other person to be nauseous or anything; but because then it's not something that should ring an alarm bell.) You know what my worried imaginings have been - that somehow I have scarring from inflammation and I have a stricture or partial blockage. Why I'm thinking that, I'm not sure, as I've had the big D ongoing for days and days and days. I wonder how much inflammation there actually is with Collagenous Colitis, and if what there is could lead to scarring. I don't know enough about it I think.
Polly, thanks for your reassurance. It really helps to hear it when I'm struggling to feel calmer about this most recent big flare. My kitties are 'shelter kitties' - we have always gotten our kitties from the local shelters ( and as I like to think; changed their poor little lives from desperate to wonderful- full of comfort and love). Animal welfare is very important to me. Why even a couple of years ago- I presented a 23 page research paper ( with pictures too) on the plight of many local animals to city council. I also researched animal welfare bylaws in other cities and wrote up an example of a humane animal bylaw. Happily the city accepted it and instated a humane animal bylaw for our city. Would you believe I actually got some 'mind your own business' type letters from some people after that. Who cares about them - someone has to speak out for the animals. I am so sorry about you losing your sweet companion and friend Polly. It's so hard. When we lost our last kitty cat - it took me quite awhile to get over it. I'd come home, and when opening the door, I'd look for my kitty even though I knew he wasn't there anymore. It was almost as if my heart and eyes kept looking for him even when my head knew better. It just sucks. Be good to yourself while you go through this loss.
Love Mia
Mia,
As far as I am aware, there is absolutely no risk that MC can cause any strictures in the intestines. (After all, MC causes no visible lesions - only microscopic changes, on a cellular basis).
There is a rare disease called diverticular colitis, which causes strictures in about 25% of cases, but it is connected with certain cases of diverticulitis, and has nothing to do with MC. Crohn's disease can sometimes cause strictures, because Crohn's disease results in lesions, (which are clearly visible to the doctor, during a colonoscopy), but again, this has nothing to do with MC. If you had any of those conditions, they would surely be noted on your endoscopy, (colonoscopy), report.
Good for you, for going so far out of your way, to help homeless pets.
Tex
As far as I am aware, there is absolutely no risk that MC can cause any strictures in the intestines. (After all, MC causes no visible lesions - only microscopic changes, on a cellular basis).
There is a rare disease called diverticular colitis, which causes strictures in about 25% of cases, but it is connected with certain cases of diverticulitis, and has nothing to do with MC. Crohn's disease can sometimes cause strictures, because Crohn's disease results in lesions, (which are clearly visible to the doctor, during a colonoscopy), but again, this has nothing to do with MC. If you had any of those conditions, they would surely be noted on your endoscopy, (colonoscopy), report.
Good for you, for going so far out of your way, to help homeless pets.
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.
Awww...Mia !! I know exactly how you feel...after my experience with Asacol I was worried about taking ANYTHING !! I literally cried when I took those first pills of Entocort ( after stopping the Asacol ). I didnt want to take anything but I had too to get some relief. I was confused, stressed, and felt horrible. I didnt even want to eat because i was so afraid that eating would bring on all those horrible symptoms again ....I was literally making myself sicker with all the worry, but i think it's normal for anyone who has had a reaction like you and I did to be very hesitant and cautious. I still am not wild about taking the entocort, BUT it has helped big time and brought relief for me SO I take it.
My Dr has me on a 8 week treatment...I still worry a bit and will stress about it if I 'dwell' too much...I am just hoping I dont have a flare when the course of Entocort is finished. I do know this, one of the reasons I have flares is due to stress, so I am trying to just go with the flow, not worry too much and pray for the best.
Please know I am sending good thoughts your way...and please let me know the results of your test that are being done on the 14th. I hope you feel some relief soon, I will surely keep you in my prayers.
Memory
My Dr has me on a 8 week treatment...I still worry a bit and will stress about it if I 'dwell' too much...I am just hoping I dont have a flare when the course of Entocort is finished. I do know this, one of the reasons I have flares is due to stress, so I am trying to just go with the flow, not worry too much and pray for the best.
Please know I am sending good thoughts your way...and please let me know the results of your test that are being done on the 14th. I hope you feel some relief soon, I will surely keep you in my prayers.
Memory
Thakyou Memory. You've described exactly how I feel - I'm afraid of that pain happening again, afraid to eat, and all mixed up! Jeeze.
It's good to hear you're doing so much better though.
You are very right about stress too. It certainly can make everything worse. I've started doing my yoga more than my usual weekly routine, as it's a wonderful stress reliever.
I will be so relieved when this flare settles down. Also I'll be relieved once I'm through the upper and lower GI's on Sept 14th ( then I'll be awaiting the results).( My doctor said he's going to do a lot more biopsies this time). Thanks for your support. I do appreciate it - it's so great to have a forum like this where you can just say what you need to, with people who know what it's like.
Mia
It's good to hear you're doing so much better though.
You are very right about stress too. It certainly can make everything worse. I've started doing my yoga more than my usual weekly routine, as it's a wonderful stress reliever.
I will be so relieved when this flare settles down. Also I'll be relieved once I'm through the upper and lower GI's on Sept 14th ( then I'll be awaiting the results).( My doctor said he's going to do a lot more biopsies this time). Thanks for your support. I do appreciate it - it's so great to have a forum like this where you can just say what you need to, with people who know what it's like.
Mia
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Mia
feeling poorly is bad enough, not having control over our bodies and the MC symptoms and reactions is overwhelming.
stress is one of my worst triggers, i can notice a change in my BM's (softer, smellier, more frequent) within 5 hours of stressful situations.
take some deep breathes, things will improve.
and yes i totally agree! had i not found this wonderful family the day i was diagnosed i am not sure what mental and emotional state i would be in.
feeling poorly is bad enough, not having control over our bodies and the MC symptoms and reactions is overwhelming.
stress is one of my worst triggers, i can notice a change in my BM's (softer, smellier, more frequent) within 5 hours of stressful situations.
take some deep breathes, things will improve.
and yes i totally agree! had i not found this wonderful family the day i was diagnosed i am not sure what mental and emotional state i would be in.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Hi Mia:
For the 13 years I have had MC, I did not have any significant amount of pain (thank goodness!) , but since going GF/ Corn free and soy free, for some bizarre reason, I am getting bouts of severe pain sometimes, especially at night. I remembered a drug called Phazeme (over the counter, active ingredient Simethicone) which I used to take years before getting the MC, when I would get very painful "gas attacks". It is a particulary useful drug in that it can relieve gas right in the intestine, not just in the stomach. Twice now in the last week, when I have gotten the severe gas pains, I took the Phazyme and within minutes the pain stopped. I am not sure if anyone else here has used it, or if there is any reason why we should not,( and maybe people can comment if they know something I don't..) but it sure has made my situation easier to bear. I mention it because I know how you feel about dreading that terrible pain again, and it might reassure you to know you can have something on hand to releive it , if it should happen again. I hadn't remembered about it when you (or some one ) asked before for things to do for the pain..not until I got my own pains!
Linda
For the 13 years I have had MC, I did not have any significant amount of pain (thank goodness!) , but since going GF/ Corn free and soy free, for some bizarre reason, I am getting bouts of severe pain sometimes, especially at night. I remembered a drug called Phazeme (over the counter, active ingredient Simethicone) which I used to take years before getting the MC, when I would get very painful "gas attacks". It is a particulary useful drug in that it can relieve gas right in the intestine, not just in the stomach. Twice now in the last week, when I have gotten the severe gas pains, I took the Phazyme and within minutes the pain stopped. I am not sure if anyone else here has used it, or if there is any reason why we should not,( and maybe people can comment if they know something I don't..) but it sure has made my situation easier to bear. I mention it because I know how you feel about dreading that terrible pain again, and it might reassure you to know you can have something on hand to releive it , if it should happen again. I hadn't remembered about it when you (or some one ) asked before for things to do for the pain..not until I got my own pains!
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Mia...I just had a thought...have you tried Pepto Bismol ? Before this last flare I was taking a probiotic, and Pepto Bismol ( 2 tablets 2-3 times a day )...it seemed to remedy the severity of my CC symptoms for several mos. I do know Pepto is a course of treatment Dr's recommend for CC...its worth a try since there isnt a risk of side effects. I plan on trying the probiotic and Pepto again the minute I finish the Entocort.
I also agree with Linda on the Simethicone...at times it did help me in the past.
Memory
I also agree with Linda on the Simethicone...at times it did help me in the past.
Memory