Need some feedback...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Need some feedback...
I am starting my 8th week of Entocort and discouraged. I have been dealing with this MC since early December and having a hard time wrapping my mind around my life's changes. I have never had any issues with food and now I am not sure wether I have gluten, dairy or any other allergies. I love food, have always loved food. I come from a family of cooks. The thought of having to change my eating habits saddens me. This medication makes me dizzy and gives me headaches. I have two good days then one bad one. What frustrates me the most is that we don't know what causes MC nor do we know how to cure it. Blah I want my old life back, I can't lose anymore weight. If I see one more potato I'm going to scream. Is this the normal course of things? Will the dizzy spells and headaches stop? What if I get a bloody stool? Does that come with the territory? My gastro doctor gets back from vacation this week so I will be sure and pepper him with my inquiries. I was just wondering if anyone else has had these issues or if I am just being a big baby.
-
Foxnhound8
- Adélie Penguin
- Posts: 84
- Joined: Thu Dec 30, 2010 7:34 am
Ooooo Enuf, I am so sorry you are sad. The folks here have said you will go through all the stages of grief and you are NOT a big baby. I'm sure someone else here will elaborate, as I got my diagnosis about the same time as you and am not all that savvy. I feel for you though. I am in the midst of some hard family issues that leave me little time to think about my disease, but then, Entocort works pretty well for me. Hang in there! There are lots of ways to deal with this and you will get lots of ideas to try from everybody.
foxnhound
foxnhound
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Enuf, first this is a good place to vent and what your going through is completely normal. I was dx'd last April and I still have times that I really want those old foods back. This is a life changing disease, but the good news is with some adjustments you can and will do well. I fully understand about the Entocort, it did make me dizzy as well. If it continues to and you really do not want to deal with the side effects be sure to talk with your GI doc about it. Entocort is one of the better meds to encourage healing the fastest, but there are other meds that may work for you as well.
As far as diet, my recommendation for now is to cut out gluten soy and dairy as a good safe starting place.
Hang in there Enuf and feel free to vent anytime, we all do.
--Joe
As far as diet, my recommendation for now is to cut out gluten soy and dairy as a good safe starting place.
Hang in there Enuf and feel free to vent anytime, we all do.
--Joe
Joe
Leslie,
I don't think I welcomed you, so WELCOME
from another Illinoisian. I live in Mundelein - do you live in Chicago proper?
I think we can all identify with your sadness at having to adjust to a new eating lifestyle. Most of us probably never had any food intolerances before MC. I didn't. Eating was a very carefree experience before MC. I didn't appreciate how good I had it until now.
You will go through the five stages of grief (denial, bargaining, anger, depression, acceptance), because this is a life-changing experience. It is perfectly normal to feel like you do. You are definitely not a baby - you are mourning your prior life.
It's too soon to know if you will have to make drastic changes in your eating. You may only have to give up gluten, for example. There are many more options for eating GF now than there were just a decade ago. It sounds awful at first, but you will gradually adapt and find that it isn't that bad. Most of us who have given up many foods maintain the hope that we can add some back someday.
I am also taking Entocort, but I've never had any problems with it. I see that you've reduced to 6 mg./day, but you're still getting dizzy spells and headaches. You might want to ask him about the dizziness and headaches. We've had a few members who've had to use a different med because of side effects.
Know that we are here to help you and to bolster you when you get down. We all get discouraged. It is comforting to know that we are not alone.
Gloria
I don't think I welcomed you, so WELCOME
from another Illinoisian. I live in Mundelein - do you live in Chicago proper?I think we can all identify with your sadness at having to adjust to a new eating lifestyle. Most of us probably never had any food intolerances before MC. I didn't. Eating was a very carefree experience before MC. I didn't appreciate how good I had it until now.
You will go through the five stages of grief (denial, bargaining, anger, depression, acceptance), because this is a life-changing experience. It is perfectly normal to feel like you do. You are definitely not a baby - you are mourning your prior life.
It's too soon to know if you will have to make drastic changes in your eating. You may only have to give up gluten, for example. There are many more options for eating GF now than there were just a decade ago. It sounds awful at first, but you will gradually adapt and find that it isn't that bad. Most of us who have given up many foods maintain the hope that we can add some back someday.
I am also taking Entocort, but I've never had any problems with it. I see that you've reduced to 6 mg./day, but you're still getting dizzy spells and headaches. You might want to ask him about the dizziness and headaches. We've had a few members who've had to use a different med because of side effects.
Know that we are here to help you and to bolster you when you get down. We all get discouraged. It is comforting to know that we are not alone.
Gloria
You never know what you can do until you have to do it.
Leslie,
Trust me, we all regret having to make drastic changes in our lifestyle, but whether we like it or not, the disease usually makes certain changes mandatory. We have a choice - we can either do what is necessary to control the disease, or we can let the disease control us.
Tex
Trust me, we all regret having to make drastic changes in our lifestyle, but whether we like it or not, the disease usually makes certain changes mandatory. We have a choice - we can either do what is necessary to control the disease, or we can let the disease control us.
Sure we know what causes it. MC is a syndrome that can be caused by many documented possibilities, including, but not limited to, viruses, bacterial infections, parasites, various drugs, (including, but not limited to NSAUDs, SSRIs, PPIs, statins, bisphosphonates), untreated celiac disease, the leaky gut syndrome, stopping a long-term smoking habit, and certain situations involving extreme chronic stress. There is no known cure and the medical community seems to be pretty much at a loss as to how to properly treat it, but the members of this board, who are motivated, are well aware of ways to effectively control the symptoms of the disease, in order to achieve and maintain remission.enuf4me wrote:What frustrates me the most is that we don't know what causes MC nor do we know how to cure it.
For patients with MC, a bloody stool is almost always due to hemorrhoids, (which are prone to becoming inflamed by the volume and frequency of secretory diarrhea, which is associated with MC). The disease itself is not associated with bloody stools, unlike Crohn's disease and ulcerative colitis.enuf4me wrote:What if I get a bloody stool?
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.
I want my old life back too! I wish I could have a potatoe....remember that the next time you eat one. For some crazy reason, potatoes make me sick now!
Somehow we all survive this terrible illness and changing your diet, is the biggest factor, to getting a somewhat normal life back.
I have lost 20lbs and I am down to 97lbs. I had to literally stop everything I was eating, and now I am eating things I never thought I would eat. The d stopped and with the help of Entocort, just one pill a day, I have no D....yeah! Now, trying to get the weight back on, but I know it's going to take a while.
Hang in there,
You too will figure it out.
Karen
Somehow we all survive this terrible illness and changing your diet, is the biggest factor, to getting a somewhat normal life back.
I have lost 20lbs and I am down to 97lbs. I had to literally stop everything I was eating, and now I am eating things I never thought I would eat. The d stopped and with the help of Entocort, just one pill a day, I have no D....yeah! Now, trying to get the weight back on, but I know it's going to take a while.
Hang in there,
You too will figure it out.
Karen
-
laurenla520
- Little Blue Penguin
- Posts: 29
- Joined: Sun Jan 30, 2011 6:26 am
Leslie,
Hi welcome! Reading your post sounds exactly the way i feel. I was diagnosed around the same time but suffering the passed year. I know how you feel but my gosh its insane going your whole like eating and using the restroom carefree as ever and wham its now a source of anxiety and frustration. Im goin through it too girl but the people on this board, im convinced really have found the answers and when they eithr, changed their diet, took certain medications, or both, have found ways to live without the terrible symptoms. i find that the toughest part my whole life my love of fast food and restaraunts has been kinda a funny thing w my family, and im finding it so hard to change my eating, but id rather do anythign then have to worry about going number two 15 hours a day so i guess im going to give gluten free another try, and theres a whole bunch of gluten free foods out there still!!
Hi welcome! Reading your post sounds exactly the way i feel. I was diagnosed around the same time but suffering the passed year. I know how you feel but my gosh its insane going your whole like eating and using the restroom carefree as ever and wham its now a source of anxiety and frustration. Im goin through it too girl but the people on this board, im convinced really have found the answers and when they eithr, changed their diet, took certain medications, or both, have found ways to live without the terrible symptoms. i find that the toughest part my whole life my love of fast food and restaraunts has been kinda a funny thing w my family, and im finding it so hard to change my eating, but id rather do anythign then have to worry about going number two 15 hours a day so i guess im going to give gluten free another try, and theres a whole bunch of gluten free foods out there still!!