Thanks again to everyone for all the info. I tend to think my CC must have been somehow related to the levaquin wiping out all the good bacteria in my colon possibly combined with my somewhat medically compromised immune system from the Humira. My psoriasis was dormant until the early 80s when I was in my late 20s (I'm 57 now). The psoriasis manifested when I started a blood pressure med called Corgard. It got really bad for a while on my hands.....cracked nails and fingers bleeding all the time. I didn't figure out the connection until about 10 years later, having blamed it on stress from a divorce. Then I saw a medical article about beta blockers causing psoriasis to flare and was able to change to a different med combination for the BP (currently taking Diovan/HCT, an ACE receptor blocker/diuretic combination). The psoriasis has been pretty much in remission since starting on Enbrel in 2004. Only reason for the change was to try to deal with the onset of the arthritis pains where the psoriasis used to be really bad (elbows, wrists and sometimes knuckles). I may talk to my dermatologist about going back on the Enbrel because the Humira really seems to have had little or no effect on that and it would be a way to change the drug regimen back to where it was pre-CC diagnosis.
I'm no doctor, just a patient trying to get to remission quicker than the doctor is trying for.....that's one of the things that's been so frustrating is the GI doc has only been seeing me monthly.....I'm going to insist that change at my next appointment or I may change docs or go for a second opinion. I think this isn't the docs fault but he's like all the other docs in this clinic, the management there seems to overload the really good docs so they don't get to give the patients the care deserved. I dropped one IM doc there a few years ago for that exact reason plus the fact the clerks and staff never seem to coordinate tests, appointments,etc making it even worse. Since I also live in a relatively small town, I'm limited in my choice of GI doc (there's only 3 and 2 of them share an office at the clinic I'm currently going to).
CathyMaine, my eye reaction was caused by steroid eye drops and my pressure test (that's the one where they blow the puff of air in the eye and measure the reaction) was really high (about 60 IIRC). I'm not really sure if an oral steroid would cause the same reaction or not but when I read the patient warning and the pharmacist said not to take it when she heard about my past history with the drops, I figured I had better wait and discuss it with the doc before starting it. My Mom had glaucoma and I do know that is a genetic disease so I can't be too careful.
Happy Easter to everyone and again thanks to all who replied! I really appreciate having this group as a sounding board and look forward to sharing more info with y'all!
Phil
Newbie's first post
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
clindamycin
First of all, welcome Phil. I have only been treating this disease for a few months and I am able to take Entocort, but Because all of these great people here have urged me to go GF and DF, I have. I feel so much better. I am hoping to step down the meds within a couple of months. I do have to tell you that although gluten,dairy,soy, and eggs are the biggest culprits, there are many other foods that can irritate a gut that is already inflamed and make matters worse. Some of these might be tomatoes, salads, raw fruit and veggies, chocolate, coffee, tea... I am hoping to add some of these foods back in one at a time to test them out ONCE I AM FEELING WELL WITH NO DRUGS. I know it sounds daunting, but you getting well will happen faster the more you restrict your diet now.
And I agree with Polly and Cathy, being a fitness trainer, I had to work out with my clients when I was at my worst. I didn't work out as HARD OR for as LONG, but it is still very important for your over all physical and mental health. Just drink LOTS OF WATER.
Keep us posted as to how you are doing
Oh my God, Christine ..... do you really think the Clindamycin is what brought your MC on?!!!! I have been on a low dose for at least eight years to treat DIV ( desquamative, inflammatory vaginitis) . When I asked both my gyn and GI doctors , they said that what I have is a DIFFERENT kind of colitis- one that isn't caused by bacteria so I should be fine with it. I have stopped using it anyway because it just didn't feel right to continue , but now I am having trouble keeping the other autoimmune thing at bay. :(
Leah
And I agree with Polly and Cathy, being a fitness trainer, I had to work out with my clients when I was at my worst. I didn't work out as HARD OR for as LONG, but it is still very important for your over all physical and mental health. Just drink LOTS OF WATER.
Keep us posted as to how you are doing
Oh my God, Christine ..... do you really think the Clindamycin is what brought your MC on?!!!! I have been on a low dose for at least eight years to treat DIV ( desquamative, inflammatory vaginitis) . When I asked both my gyn and GI doctors , they said that what I have is a DIFFERENT kind of colitis- one that isn't caused by bacteria so I should be fine with it. I have stopped using it anyway because it just didn't feel right to continue , but now I am having trouble keeping the other autoimmune thing at bay. :(
Leah
Hi Phil and welcome,
I thought I'd share that I was able to get to "softserve" once a day after 4 months of WD 3 days b/f I had my colonoscopy just kind of stumbling around in the dark. I was on zero prescription drugs, I eliminated all supplements and I mean all....no vitamins, no calcium no glucosomine, no nothing, I ate chicken, rice and an overcooked veggie for 8 weeks (and nothing else) I tried to go to a meditative yoga once a day but averaged around 4x per week and after 8 weeks of all of this I stumbled into "softserve" mode. Had my colonoscopy and got my diagnosis about 4 weeks later. Found this website...was in softserve once a day mode for about an additional 6-8 weeks and then I caved to pressure from my employer and friends to get on drugs so then went on Entocort.
It is possible to heal without Entocort but looking back I believe I had an edge in getting to "softserve" kind of fast in that I was not taking any prescription drugs and I discontinued all supplements for awhile. Once I got to solid stool I added back calcium, vitamin D etc.
I'm not familiar with RA or psoriatic arthritis but I can tell you I suffered pretty severe preexisting joint pain...in my fingers, wrists and arms from age 35 - 50. 3 months after going GF my preexisting joint pain was 100% gone. It is still kind of amazing to me....I wake up in the morning and wiggle my fingers without pain....use my hands all day....and go to bed without pain. In many ways since going GF, DF and SF I feel 15 years younger.
Gut wrenching fatigue is common with this disease. Had blood work during the fatigue period. Everything always came up normal.
I worked out throughout the disease. I lessened my weights that I lifted prior to CC. On days I could not get to the gym I'd try to at least get a walk in--it seemed to relieve the stress of the situation.
Again welcome. I've at the start of remission now and believe people drop off the forum as they actually heal or I guess technically go into remission. Brandy
I thought I'd share that I was able to get to "softserve" once a day after 4 months of WD 3 days b/f I had my colonoscopy just kind of stumbling around in the dark. I was on zero prescription drugs, I eliminated all supplements and I mean all....no vitamins, no calcium no glucosomine, no nothing, I ate chicken, rice and an overcooked veggie for 8 weeks (and nothing else) I tried to go to a meditative yoga once a day but averaged around 4x per week and after 8 weeks of all of this I stumbled into "softserve" mode. Had my colonoscopy and got my diagnosis about 4 weeks later. Found this website...was in softserve once a day mode for about an additional 6-8 weeks and then I caved to pressure from my employer and friends to get on drugs so then went on Entocort.
It is possible to heal without Entocort but looking back I believe I had an edge in getting to "softserve" kind of fast in that I was not taking any prescription drugs and I discontinued all supplements for awhile. Once I got to solid stool I added back calcium, vitamin D etc.
I'm not familiar with RA or psoriatic arthritis but I can tell you I suffered pretty severe preexisting joint pain...in my fingers, wrists and arms from age 35 - 50. 3 months after going GF my preexisting joint pain was 100% gone. It is still kind of amazing to me....I wake up in the morning and wiggle my fingers without pain....use my hands all day....and go to bed without pain. In many ways since going GF, DF and SF I feel 15 years younger.
Gut wrenching fatigue is common with this disease. Had blood work during the fatigue period. Everything always came up normal.
I worked out throughout the disease. I lessened my weights that I lifted prior to CC. On days I could not get to the gym I'd try to at least get a walk in--it seemed to relieve the stress of the situation.
Again welcome. I've at the start of remission now and believe people drop off the forum as they actually heal or I guess technically go into remission. Brandy
Hi Phil!
I just wanted to say Welcome and second Polly's advice about discontinuing Celebrex. I'm actually surprised your GI doc didn't tell you to stop it, since even the most archaic GI docs know the connection between NSAIDS and MC. When I was first diagnosed 3 years ago, my ex-GI told me NSAIDS such as Ibuprofen were totally contraindicated for me from now on. Luckily I haven't needed a pain reliever or antibiotic or any other prescription since I started the Gluten Free/Dairy Free mostly Soy Free diet. I have only used Pepto Bismol tabs for flares.
Question: have you been tested for celiac disease yet? At least the blood screen? MC is common among celiacs, and many of us have celiac genetics, although many MCers end up with negative blood tests (leaving us with the "non-celiac gluten sensitivity" label). I'm convinced I had early celiac when my MC started. Which came first? I don't know. Luckily I was able to discover my food intolerances (and my gluten sensitive genetics) through Enterolab testing.
I hope you are able to find what you need here to get well again!
I just wanted to say Welcome and second Polly's advice about discontinuing Celebrex. I'm actually surprised your GI doc didn't tell you to stop it, since even the most archaic GI docs know the connection between NSAIDS and MC. When I was first diagnosed 3 years ago, my ex-GI told me NSAIDS such as Ibuprofen were totally contraindicated for me from now on. Luckily I haven't needed a pain reliever or antibiotic or any other prescription since I started the Gluten Free/Dairy Free mostly Soy Free diet. I have only used Pepto Bismol tabs for flares.
Question: have you been tested for celiac disease yet? At least the blood screen? MC is common among celiacs, and many of us have celiac genetics, although many MCers end up with negative blood tests (leaving us with the "non-celiac gluten sensitivity" label). I'm convinced I had early celiac when my MC started. Which came first? I don't know. Luckily I was able to discover my food intolerances (and my gluten sensitive genetics) through Enterolab testing.
I hope you are able to find what you need here to get well again!
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Leah
After the dentist gave me Clindamycin and then re-filled the prescription for a second course I was told by a Dr. Friend that many practitioners are too young to remember 20 years go when so many people had severe gut problems from taking it. My GI doc was given it for a tooth abscess himself, took it 2 days before the D hit. He called the dentist and told him it was a nasty drug and he (GI doc) thought the dentist should quit prescribing it. I would check out alternate broad spectrum drugs if I were you, or at least take heavy-duty probiotics. Just a suggestion....I certainly don't have medical knowledge.
Chris
After the dentist gave me Clindamycin and then re-filled the prescription for a second course I was told by a Dr. Friend that many practitioners are too young to remember 20 years go when so many people had severe gut problems from taking it. My GI doc was given it for a tooth abscess himself, took it 2 days before the D hit. He called the dentist and told him it was a nasty drug and he (GI doc) thought the dentist should quit prescribing it. I would check out alternate broad spectrum drugs if I were you, or at least take heavy-duty probiotics. Just a suggestion....I certainly don't have medical knowledge.
Chris
Leah,
I'm a bit concerned about the clindamycin, also. The two antibiotics that we have consistently found to be the safest for most people with MC, are ciprofloxacin and azithromycin. Both are broad spectrum antibiotics, though I don't know if they would be reliable substitutes for your purposes. Cipro actually brings remission for most people with MC who are symptomatic when they take it, but the effect soon fades after it is discontinued.
The primary side effect of cipro, (especially with long-term use), is a significantly increased risk of tendonitis, (or ruptured tendons), which, of course, does not fit very well with the lifestyle of most athletes. I don't recall what side effect risks azithromycin might have, but I believe that it has an unusually long half-life, so it usually gives persistent control, with only a single daily dosing schedule.
Tex
I'm a bit concerned about the clindamycin, also. The two antibiotics that we have consistently found to be the safest for most people with MC, are ciprofloxacin and azithromycin. Both are broad spectrum antibiotics, though I don't know if they would be reliable substitutes for your purposes. Cipro actually brings remission for most people with MC who are symptomatic when they take it, but the effect soon fades after it is discontinued.
The primary side effect of cipro, (especially with long-term use), is a significantly increased risk of tendonitis, (or ruptured tendons), which, of course, does not fit very well with the lifestyle of most athletes. I don't recall what side effect risks azithromycin might have, but I believe that it has an unusually long half-life, so it usually gives persistent control, with only a single daily dosing schedule.
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.
clidamycin
Christine and Tex, I don't know if they make other anti-bacterial vaginal creams. I don't take the clindamycin orally, so it is only absorbed marginally and I only use it once a week usually ( unless I have a flare), but I have been on a low dose now for many, many years. I didn't feel good about the continued use, so I stopped using it. At first, my symptoms got worse, but now they are actually getting better!!!! I don't know if it's the Entocort that is helping or the Gluten free diet, but it's kind of amazing to me since I've been struggling with this for 15 years. I won't know for sure until I'm off of the Entocort, but I think I will make an appointment with my ob/gyn to make sure that I'm not imagining this phenomenon.
Leah,
If the condition is, in fact, autoimmune, and not a bacterial infection, it wouldn't surprise me that it is helped by Entocort and/or the gluten free diet. From what I read, DIV is purely an inflammatory process, and the clindamycin helps (at least in part) because of it's anti-inflammatory effects.
If the condition is, in fact, autoimmune, and not a bacterial infection, it wouldn't surprise me that it is helped by Entocort and/or the gluten free diet. From what I read, DIV is purely an inflammatory process, and the clindamycin helps (at least in part) because of it's anti-inflammatory effects.
Have you tried vaginal probiotic treatments? Especially after the constant use of an antibiotic, I imagine replenishing the lactobacilli should be important. Ever consult a naturopathic doctor for alternative treatments?Under the microscope many white blood cells (pus cells) are seen, and there is an absence of normal vaginal bacteria called lactobacilli. The pH of the vagina is high in women with DIV.
Hi Zizzle. No, I haven't gone to a naturopathic doctor, but I have done vaginal probiotic treatments. In the past 15 years, I have been through at least 6-8 doctors and an amazing amount of "treatments". When I was at my worst, I was producing copious amounts of discharge ( sorry to anyone reading this who is offended). It was horrible. I guess because under my regimen, it got somewhat under control, I didn't look further. I also was inserting a hydrocortisone suppository weekly and I take Singular Daily. I have stopped the clindamycin cream and the hyrdocortisone.
Leah
Leah
1stvisit to GI doc after diagnosis
Well y'all were all correct about the doc still insisting my cc is not diet related. Anyway he still wants me to try the Entocort as that has helped several patients with cc. I was surprised to hear he has several with cc since most websites say the occurrence is about 16 in 100,000! Anyway since I had the elevated eye pressure at one time with the steroid eye drops he is going to consult with my ophthalmologist to se if he thinks the Entocort will be OK. Oh and he said I absolutely must give up my Celebrex since this condition has been linked to NSAIDS and wrote me a rx for Ultram to take for the arthritis instead of Celebrex.
So for now I'm going to follow his advice and hope my ophthalmologist approves the Entocort.
Thanks again to all for the great emails and advice!
Phil
So for now I'm going to follow his advice and hope my ophthalmologist approves the Entocort.
Thanks again to all for the great emails and advice!
Phil
Phil,
Welcome to the club, Phil. If you are anything like many of us here who had "arthritis", the "arthritis" goes away once your body is clear of the toxins of gluten. I was seeing the head of Rheumatology at Oregon Health Sciences University, Dr. Atul Deodhar, (I hope you see this in a google search, Dr. D) for years before my dx/w/MC because I was in constant pain. He wrote on my chart, after I refused to take methotrexate or sulfasalazine to "suppress my immune system" (his ONLY answer to my pain) that I refused to take medication and would be disabled within 5 years - that was 9 years ago. I also refused Entocort after much research, although I know it's been successfully used by many here, I am just afraid of drugs and treated my MC w/o any prescription meds by eliminating gluten and using OTC meds.
Wean yourself off Celebrex and take tylenol as long as you need it. I have a 24 year old business that has physical aspects to it that a 25 year old would be intimidated by. I'm 63 now, strong as a horse and all my body pain is GONE. I will be GF for 3 years as of 8/1/12. I have 2 sisters who walk with canes, that's canes plural - they won't be tested or change their diet, they don't have diarrhea - so maybe we should be thankful that diarrhea appeared and had to be dealt with, so we actually found out what really was making us sick. As a double DQB1, I'm one of the lucky ones, gluten appears to be my only intolerance - maybe tapioca too - but I used to be dairy intolerant and I can eat ice cream now and used to react immediately. Go slowly, Phil, be your own doctor.
Connie
Welcome to the club, Phil. If you are anything like many of us here who had "arthritis", the "arthritis" goes away once your body is clear of the toxins of gluten. I was seeing the head of Rheumatology at Oregon Health Sciences University, Dr. Atul Deodhar, (I hope you see this in a google search, Dr. D) for years before my dx/w/MC because I was in constant pain. He wrote on my chart, after I refused to take methotrexate or sulfasalazine to "suppress my immune system" (his ONLY answer to my pain) that I refused to take medication and would be disabled within 5 years - that was 9 years ago. I also refused Entocort after much research, although I know it's been successfully used by many here, I am just afraid of drugs and treated my MC w/o any prescription meds by eliminating gluten and using OTC meds.
Wean yourself off Celebrex and take tylenol as long as you need it. I have a 24 year old business that has physical aspects to it that a 25 year old would be intimidated by. I'm 63 now, strong as a horse and all my body pain is GONE. I will be GF for 3 years as of 8/1/12. I have 2 sisters who walk with canes, that's canes plural - they won't be tested or change their diet, they don't have diarrhea - so maybe we should be thankful that diarrhea appeared and had to be dealt with, so we actually found out what really was making us sick. As a double DQB1, I'm one of the lucky ones, gluten appears to be my only intolerance - maybe tapioca too - but I used to be dairy intolerant and I can eat ice cream now and used to react immediately. Go slowly, Phil, be your own doctor.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
I'm going to chime in (a bit late) with my own warm welcome Phil. This is SUCH a great place.
Levaquin is on my "no no" list. It gave me serious joint pain. Or maybe it was tendon pain. Who knows, but waking up with aching stiff hips just wasn't right. Something in calcium supplements does as well...at least all the ones I have tried previous to my sudden arrival of CC. The achiness in my hands which I thought was the arrival of arthritis disappeared when I stopped taking calcium even sporadically. The DRs all look at me dumbfounded...but it just convinces me to trust my body's reactions and suspect what I am putting into it.
A wonderful day to all
Mary
Levaquin is on my "no no" list. It gave me serious joint pain. Or maybe it was tendon pain. Who knows, but waking up with aching stiff hips just wasn't right. Something in calcium supplements does as well...at least all the ones I have tried previous to my sudden arrival of CC. The achiness in my hands which I thought was the arrival of arthritis disappeared when I stopped taking calcium even sporadically. The DRs all look at me dumbfounded...but it just convinces me to trust my body's reactions and suspect what I am putting into it.
A wonderful day to all
Mary
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
A very late welcome to you Phil. You have been given wonderful advice by people who are in the same boat, who are knowledgeable and compassionate. I depended upon this Board when I was first diagnosed and come back periodically to check a specific issue or just to see how everyone is doing. (Where are your Sarah?)
Well, the D came back with a vengeance this week and so I am back here again checking out the posts. I "forgot" how bad Celebrex is for us and after going on and off Celebrex many times, I am back on it again. Reading through the posts here has reminded me why I need to get off it completely. I dread the return of joint pain that I know will come within a day or two but IMO relentless diarrhea is far worse. Because of my age, 70, osteoarthritis has been at work in my body for a long time and a lot of damage has been done. I also have a fused back and chronic pain from nerve damage. I LOVE Celebrex but will give it up once again. The reason for my post, someone mentioned weaning off Celebrex. I had always just stopped taking it and within a day or two, the stiffness and pain in my joints would jump off the charts. Do you wean off by taking it every other day, every third day? How long does it take to wean off it? It's a capsule and can't be cut in half. I'm pretty sure Tex has the answer to this but if anyone else has information, please let me know. Thanks.
Sheila W
PS I am still taking 1 entocort a day.
Well, the D came back with a vengeance this week and so I am back here again checking out the posts. I "forgot" how bad Celebrex is for us and after going on and off Celebrex many times, I am back on it again. Reading through the posts here has reminded me why I need to get off it completely. I dread the return of joint pain that I know will come within a day or two but IMO relentless diarrhea is far worse. Because of my age, 70, osteoarthritis has been at work in my body for a long time and a lot of damage has been done. I also have a fused back and chronic pain from nerve damage. I LOVE Celebrex but will give it up once again. The reason for my post, someone mentioned weaning off Celebrex. I had always just stopped taking it and within a day or two, the stiffness and pain in my joints would jump off the charts. Do you wean off by taking it every other day, every third day? How long does it take to wean off it? It's a capsule and can't be cut in half. I'm pretty sure Tex has the answer to this but if anyone else has information, please let me know. Thanks.
Sheila W
PS I am still taking 1 entocort a day.
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein