Hi all
I've been on 3mg of budesonide for the past 2 months and my BMs have stayed consistent during this period (i.e. once in the morning, oatmeal/sludge consistency rated 6 on Bristol scale). Occasionally I'll skip 1-2 days but it doesn't seem to make a difference with the next BM not being any more solid.
My stomach gurgling and ab pain were noticeable a few weeks ago but they seem to have calmed down recently.
I'm experiencing frequent urination (10-12 times a day including a couple of times in the night which is interrupting my sleep). I'll usually get 1-2 days during the week where I don't need to go during the night but I can't pin down why.
My energy levels are hovering around the 6 out of 10 range.
Here's a list of medication/food etc that I'm currently taking:
Daily Medication
budesonide (entocort) 3mg daily
contraceptive pill
Daily Supplements
sublingual B12
zinc drops
D3 drops
magnesium spray
l-glutamine
gastrazyme (for low stomach acid)
SAMe (natural anti-depressant)
Food that I rotate
lamb
chicken
canned sardines (in springwater)
carrot
pumpkin
beetroot (occasionally)
white rice (daily)
ripe bananas (occasionally)
blueberries (this is a recent addition, it hasn't made a difference apart from creating green coloured stools)
Drink
water
warm water with Braggs organic apple cider vinegar (for low stomach acid)
lemongrass & ginger tea
Stress levels
moderate - high
I know it takes a long time for the gut to heal and healing differs from person to person, however I just wanted to check in and ask do I seem to be making good progress so far or is there something else I should be addressing/eliminating?
Any thoughts welcome.
thanks!
Helen
Am I making progress?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Helen.
It sounds like you are doing better then you were, so I'd say that is progress. Green BMs usually means faster transit, so not sure the blueberries are great, but small quantities are probably Ok I guess.
Like you said, this takes time. I would continue as is and see if you continue to progress. If after a month or so, you are"stuck" in the same place, then you can rethink some of the things you are/are not doing.
Leah
It sounds like you are doing better then you were, so I'd say that is progress. Green BMs usually means faster transit, so not sure the blueberries are great, but small quantities are probably Ok I guess.
Like you said, this takes time. I would continue as is and see if you continue to progress. If after a month or so, you are"stuck" in the same place, then you can rethink some of the things you are/are not doing.
Leah
"Interstitial cystitis baking soda". I found that it really helped me with frequency, I don't have pain.
Years ago, my docs gave me all the over-active bladder meds and they did not work.
Years ago, my docs gave me all the over-active bladder meds and they did not work.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Helen,
I agree that you seem to be on track with your treatment.
Regarding the bladder issues, this is strictly based on the experiences of the members of this board (and not based on any official medical research articles), but for some of us, it appears that MC causes bladder symptoms similar to interstitial cystitis. And as Joan suggests, drinking a glass of water mixed with one-half teaspoon of baking soda (with a maximum of three glasses per day), raises the pH of the urine, and since this reduces the acidity, this can help to reduce the frequency of urination. And if any pain is present, reducing the acidity will also help to reduce the pain.
Many members here use D-mannose to treat and/or prevent UTIs. I'm not sure if this will help to reduce urgency/frequency in this type of situation also, but it might. If the interstitial cystitis-like symptoms are due to lymphocytic infiltration into the lining of the bladder (just as LC is marked by lymphocytic infiltration into the lining of the intestines), then it may not help. In my case at least, my bladder issues disappeared when my MC symptoms were resolved, and that suggests that lymphocytic infiltration may indeed be the problem.
On the other hand, if bacteria are the cause of the symptoms, then D-mannose should be very beneficial, because it works for treating and preventing UTIs by preventing bacteria from being able to attach to the inner surface of the bladder. At any rate, it shouldn't hurt to try it, because D-mannose appears to be generally safe to use, and no one here has ever reported any side effects.
It's possible that the contraceptive pills may be a problem. Hormonal supplements aren't necessarily a problem for everyone, but they can prevent remission in some cases. That's something to keep in mind in the future, if remission remains elusive.
Tex
I agree that you seem to be on track with your treatment.
Regarding the bladder issues, this is strictly based on the experiences of the members of this board (and not based on any official medical research articles), but for some of us, it appears that MC causes bladder symptoms similar to interstitial cystitis. And as Joan suggests, drinking a glass of water mixed with one-half teaspoon of baking soda (with a maximum of three glasses per day), raises the pH of the urine, and since this reduces the acidity, this can help to reduce the frequency of urination. And if any pain is present, reducing the acidity will also help to reduce the pain.
Many members here use D-mannose to treat and/or prevent UTIs. I'm not sure if this will help to reduce urgency/frequency in this type of situation also, but it might. If the interstitial cystitis-like symptoms are due to lymphocytic infiltration into the lining of the bladder (just as LC is marked by lymphocytic infiltration into the lining of the intestines), then it may not help. In my case at least, my bladder issues disappeared when my MC symptoms were resolved, and that suggests that lymphocytic infiltration may indeed be the problem.
On the other hand, if bacteria are the cause of the symptoms, then D-mannose should be very beneficial, because it works for treating and preventing UTIs by preventing bacteria from being able to attach to the inner surface of the bladder. At any rate, it shouldn't hurt to try it, because D-mannose appears to be generally safe to use, and no one here has ever reported any side effects.
It's possible that the contraceptive pills may be a problem. Hormonal supplements aren't necessarily a problem for everyone, but they can prevent remission in some cases. That's something to keep in mind in the future, if remission remains elusive.
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.
UGH--frequent urination. I have never had a problem, no history of UTIs. All of a sudden, big problem. Went to the doc, no UTI detected. Doc diagnosed spasms, gave me Vesicare 5mg. Worked like a charm for two days, then bad again this AM. Took 10mg today, settled things down. Now the doc wants me to have an ultrasound of the bladder in which I will theoretically drink 24 oz. an hour before the test, then hold it till whenever they get around to me. The likelihood of me being able to do that is slim to none. I'm already worked up about it.
Suze
Hi Suze. I've been through the ultrasound thing many times and I have never needed to drink 24 oz. an hour before. I am well aware of how much it takes to fill my bladder, so I usually just drink about a water bottle worth on my way to the facility and by the time I am checked in and undressed and ready to go, my bladder is plenty full for them to get a good picture. Try not to worry and maybe practice the day before so you know the amount and timing it takes for you to "have to go"
Leah
Leah
Thanks all for your replies.
I guess the reason for my concern is because the first time I did the round of budesonide I was getting normans but this time around I'm not. The last time I was following an SCD diet. I think I'll cut out rice for a week and see if that makes any difference (didn't eat rice on first round of budesonide).
I don't think I have IC as I don't have associated urgency, burning or pain. The urine streams are very long too (i.e. 1min). I've heard it may be a side effect of budesonide. The reading I've been doing on the Chrohns forum suggest they have these issues but they are on different medication to me...Or it could very well be the lymphocytic infiltration into the lining of the bladder as you suggest Tex.
Apologies if this question has already been asked, but are there any long term implications of staying on a 3mg daily dose of budesonide long term e.g. a year? My 2nd round of budesonide has been since August.
Does the gut have a chance to heal while on budesonide? (assuming the correct diet is followed) etc.
thanks again
Helen
I guess the reason for my concern is because the first time I did the round of budesonide I was getting normans but this time around I'm not. The last time I was following an SCD diet. I think I'll cut out rice for a week and see if that makes any difference (didn't eat rice on first round of budesonide).
I don't think I have IC as I don't have associated urgency, burning or pain. The urine streams are very long too (i.e. 1min). I've heard it may be a side effect of budesonide. The reading I've been doing on the Chrohns forum suggest they have these issues but they are on different medication to me...Or it could very well be the lymphocytic infiltration into the lining of the bladder as you suggest Tex.
Apologies if this question has already been asked, but are there any long term implications of staying on a 3mg daily dose of budesonide long term e.g. a year? My 2nd round of budesonide has been since August.
Does the gut have a chance to heal while on budesonide? (assuming the correct diet is followed) etc.
thanks again
Helen
Helen,
Based on the past experiences of members of this board, it appears that as long as one takes adequate amounts of vitamin D and magnesium (in order to lower/prevent an osteoporosis risk), taking budesonide at such a low dosage level doesn't appear to pose any significant health risks (even if used for years). We have members who have been taking it for 5 or 6 years, with no apparent problems.
IOW, healing has to proceed in an orderly, prescribed fashion, beginning with inflammation and then proceeding to the next stage (removing the dead cells and debris that result from the inflammation). But by artificially suppressing inflammation, the first stage of healing is compromised. The immune system is confounded by the fact that in spite of reduced inflammation, new inflammation continues to be produced, and as long as new inflammation is being generated, it cannot proceed to the next stage of removing dead cells and debris (which would then normally be followed by actual repair of damaged cells, and/or the total replacement of cells that were killed by apoptosis during the first stage of the healing process).
So I dunno.
I suspect that some healing takes place, but obviously not enough, because relapses are extremely common when the medication is discontinued too abruptly.
I kind of doubt that someone would heal faster by diet alone, but I don't know that for a fact, since it would take an extensive clinical trial to actually verify such a concept.
I agree that something in your diet is apparently interfering with your recovery, so a bit of dietary experimentation (excluding foods, one by one) would probably be a good idea.
The bladder issue associated with MC is probably not actually interstitial cystitis — it's probably just an inflamed condition with somewhat similar symptoms. It was a regular problem for me, back when I was recovering, but it never occurred to me to try to treat it, back then.
Tex
Based on the past experiences of members of this board, it appears that as long as one takes adequate amounts of vitamin D and magnesium (in order to lower/prevent an osteoporosis risk), taking budesonide at such a low dosage level doesn't appear to pose any significant health risks (even if used for years). We have members who have been taking it for 5 or 6 years, with no apparent problems.
That's a very tough question, and I'm not sure that I know the answer. One would think that some healing is taking place, since symptoms are suppressed. The problem is that it suppresses symptoms by suppressing inflammation (not by preventing inflammation), and inflammation is a vital part of the healing process. If it prevented inflammation (as the diet changes do) then normal healing could proceed.Helen wrote:Does the gut have a chance to heal while on budesonide? (assuming the correct diet is followed) etc.
IOW, healing has to proceed in an orderly, prescribed fashion, beginning with inflammation and then proceeding to the next stage (removing the dead cells and debris that result from the inflammation). But by artificially suppressing inflammation, the first stage of healing is compromised. The immune system is confounded by the fact that in spite of reduced inflammation, new inflammation continues to be produced, and as long as new inflammation is being generated, it cannot proceed to the next stage of removing dead cells and debris (which would then normally be followed by actual repair of damaged cells, and/or the total replacement of cells that were killed by apoptosis during the first stage of the healing process).
So I dunno.
I suspect that some healing takes place, but obviously not enough, because relapses are extremely common when the medication is discontinued too abruptly. I kind of doubt that someone would heal faster by diet alone, but I don't know that for a fact, since it would take an extensive clinical trial to actually verify such a concept.
I agree that something in your diet is apparently interfering with your recovery, so a bit of dietary experimentation (excluding foods, one by one) would probably be a good idea.
The bladder issue associated with MC is probably not actually interstitial cystitis — it's probably just an inflamed condition with somewhat similar symptoms. It was a regular problem for me, back when I was recovering, but it never occurred to me to try to treat it, back then.
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.
Jon,
I don't understand what you're saying. Are you saying that you've been trying the baking soda 'treatment", but you haven't been seeing any results? Or have you just been monitoring the acidity without any type of intervention?
My last lab test (10/01/2013) showed a urine pH of 5.0 (normal range 5.0–8.0).
Tex
I don't understand what you're saying. Are you saying that you've been trying the baking soda 'treatment", but you haven't been seeing any results? Or have you just been monitoring the acidity without any type of intervention?
My last lab test (10/01/2013) showed a urine pH of 5.0 (normal range 5.0–8.0).
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.