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Hi all,
Memorial Day weekend I spent prepping (2-day prep-horrible) for a colonoscopy and 4th of July weekend I spent collecting for the Enterolab specimen. Labor Day weekend should be better. The specimen was mailed out on 7-5. I have been diary, egg and pretty much gluten free. I know that I glutened, diary and egged myself yesterday, I was craving an egg sandwich. I felt absolutely horrible last night but did not have D this morning. I'm still on 2 Entocort's a day and have been pretty much D free. I am having side effects, they are just annoying. I get random hives (I never got hives), have a pretty persistent dull headache, getting bruises that I don't know how I got them and I'm ravenously hungry all of the time.
BTW, I found a pretty decent penne pasta. Rienzi brand sells gluten free pasta in our local Stop & Shop in NJ it is 70% corn and 30% rice.
Now to vent. I see too many Drs. I see a Endocrinologist for my osteoporosis and underactive thyroid, a rheumatologist for my fibromyalgia, the GI Dr., and recently was back to my PCP. I'm sick of all of them. I'm tired of explaining to each of them what the other is treating me for. I got totally disgusted with the Endocrinologist at my last followup. I told him of the MC diagnosis, my concerns of taking the Entocort because of the effect it can have on bone density and told him of my concerns of taking the fosamax and reclast in the past for the osteoporosis and how now it is being reported that those medications can cause femur fractures. He got very defensive and told me that this visit was for the thyroid, his attitude really made me mad.
This I did not share with you in my other posts. I was treated in April and May for a nervous breakdown. Between the D being in full force, the recent deaths of my mother and my husband's father within two months of each other, working 55+ hours per week and it not being enough (along with an internal investigation of my supervisor that dragged our department through the coals), I just totally lost it and walked out of my job. I didn't share this information with the GI because I was afraid I was going to be told the D was due to stress.
Enough of that, I needed to vent, thank you for listening. I am going away in a week ( a road trip am taking Immodium with me just in case) and I'm hoping that when I get back my results will be in from Enterolab.
Thanks,
Susanne
an update and venting
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Joefnh
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Hi Susanne and feel free to vent, this is the place to do it and we all should vent once in a while.
It sounds like you are dealing with the 'typical' issues that many of us struggle with. I think just about everyone here especially early on in accepting this disease do challenge the dietary issues and 'pay the price...' It's no fun but it is a good way to learn the lesson.
The good news Susanne is that you are on the right path to being able to control this with little to no meds. The key is eliminating the foods that are bothering you.
I can understand the issue with stress and too many doctors, I have found that to be very hard to deal with as well. I have Crohns on top of mc and it seems I am always getting poked and probed.
From what you went through it's no surprise that it affected you emotionally Susanne,each and every one of us is only human and can only handle so much. Please look at this as just a repsonse to very exceptional circumstances not a weakness on your part. It's too easy to blame yourself for these events. Frankly I am impressed with how up you are handling all of these issues in such a short timeframe and have found encouragement in what you have shared.
I noticed you list north NJ as home,, I grew up in Mount Arlington NJ
Hang in there and vent away.
Take care
Joe
It sounds like you are dealing with the 'typical' issues that many of us struggle with. I think just about everyone here especially early on in accepting this disease do challenge the dietary issues and 'pay the price...' It's no fun but it is a good way to learn the lesson.
The good news Susanne is that you are on the right path to being able to control this with little to no meds. The key is eliminating the foods that are bothering you.
I can understand the issue with stress and too many doctors, I have found that to be very hard to deal with as well. I have Crohns on top of mc and it seems I am always getting poked and probed.
From what you went through it's no surprise that it affected you emotionally Susanne,each and every one of us is only human and can only handle so much. Please look at this as just a repsonse to very exceptional circumstances not a weakness on your part. It's too easy to blame yourself for these events. Frankly I am impressed with how up you are handling all of these issues in such a short timeframe and have found encouragement in what you have shared.
I noticed you list north NJ as home,, I grew up in Mount Arlington NJ
Hang in there and vent away.
Take care
Joe
Joe
Hi Joe,
I'm a Jersey girl, born and raised in Bergen County, and now live in Ramsey, 10 minutes from the NY border. All I know about Mt. Arlington is that we pass it on Route 80.
My husband and 2 sisters have given me alot of support through out everything, thank goodness. In fact my husband and sister cornered me when I totally lost it and told me I had to quit the job. Now to find a new one, that's proving to be a challenge. My sisters used to make fun of me because of the daily D (I'm the youngest sister and the brunt of many jokes) and I would take it in stride, now they feel bad.
I had previously notice problems after eating certain foods. I love my cappucino's, however, always felt very bloated after one. Whole wheat bread is another story, I can't eat it at all, instant upset stomach, gas, bloating. Another problem is the Italian food that I love (I'm Italian). I will find another way to enjoy it. I was so glad when I found the Rienzi gluten free pasta in Stop and Shop.
Thanks, again. It is so great to have people who understand to talk to. It really has helped.
Susanne
I'm a Jersey girl, born and raised in Bergen County, and now live in Ramsey, 10 minutes from the NY border. All I know about Mt. Arlington is that we pass it on Route 80.
My husband and 2 sisters have given me alot of support through out everything, thank goodness. In fact my husband and sister cornered me when I totally lost it and told me I had to quit the job. Now to find a new one, that's proving to be a challenge. My sisters used to make fun of me because of the daily D (I'm the youngest sister and the brunt of many jokes) and I would take it in stride, now they feel bad.
I had previously notice problems after eating certain foods. I love my cappucino's, however, always felt very bloated after one. Whole wheat bread is another story, I can't eat it at all, instant upset stomach, gas, bloating. Another problem is the Italian food that I love (I'm Italian). I will find another way to enjoy it. I was so glad when I found the Rienzi gluten free pasta in Stop and Shop.
Thanks, again. It is so great to have people who understand to talk to. It really has helped.
Susanne
Susanne,
The hives are probably a sign that you may have mast cell issues, (associated with MC), so you may have problems with foods that are high in histamine content, or foods that promote the degranulation of mast cells. Unfortunately, mast cell issues are a satellite problem for many people with MC, though mast cells aren't even on the radar of most GI docs, yet.
Entocort causes easy bruising for most users, but that's not a serious issue, and it goes away after the use of Entocort is discontinued.
I agree with you that the attitude held by most specialists is very inconsiderate, and most inappropriate. They feel that they are there to treat one specific issue, and they don't give a hang about any other issues. Well bully for them, but IMO, they should consider themselves a doctor first, and a specialist second. If they're not interested in a patient's overall health, they have forgotten that they are a doctor. The patient file that they have open before them, should contain an up-to-date record of the patient's medical history. Why don't they bother to read it, and familiarize themselves with the details? After all, that's what the file is supposed to be for. Unfortunately, most specialists simply view the patient file as a log for their own contributions to the patient's treatment, which is woefully inadequate.
As Joe said, you're well on your way to figuring out this disease, so that means that you're getting closer to being able to resolve all your symptoms. Having a supportive husband, and other family members, is extremely valuable when you're dealing with issues such as these, so they are definitely a big plus in your life.
You certainly have a right to vent, and rest assured that you are not the first member to find that once things start going downhill, everything seems to head south at the same time. Been there, done that. I hope that the road trip is relaxing, and that it will give you a chance to "recharge your battery", so to speak. Thanks for the update.
Tex
The hives are probably a sign that you may have mast cell issues, (associated with MC), so you may have problems with foods that are high in histamine content, or foods that promote the degranulation of mast cells. Unfortunately, mast cell issues are a satellite problem for many people with MC, though mast cells aren't even on the radar of most GI docs, yet.
Entocort causes easy bruising for most users, but that's not a serious issue, and it goes away after the use of Entocort is discontinued.
I agree with you that the attitude held by most specialists is very inconsiderate, and most inappropriate. They feel that they are there to treat one specific issue, and they don't give a hang about any other issues. Well bully for them, but IMO, they should consider themselves a doctor first, and a specialist second. If they're not interested in a patient's overall health, they have forgotten that they are a doctor. The patient file that they have open before them, should contain an up-to-date record of the patient's medical history. Why don't they bother to read it, and familiarize themselves with the details? After all, that's what the file is supposed to be for. Unfortunately, most specialists simply view the patient file as a log for their own contributions to the patient's treatment, which is woefully inadequate.
As Joe said, you're well on your way to figuring out this disease, so that means that you're getting closer to being able to resolve all your symptoms. Having a supportive husband, and other family members, is extremely valuable when you're dealing with issues such as these, so they are definitely a big plus in your life.
You certainly have a right to vent, and rest assured that you are not the first member to find that once things start going downhill, everything seems to head south at the same time. Been there, done that. I hope that the road trip is relaxing, and that it will give you a chance to "recharge your battery", so to speak. Thanks for the update.
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.