BRAND NEW TO CC - Questions galore!!

[Sheila]

Hello Treese, Sorry to be so late to this discussion. You and I share some things. I had a spinal fusion in 2007 (first back surgery was in 1989). I understand the back pain you are living with. I took Percocet, 7.5 mg 3-4x a day for 7 1/2 years. I decided to wean off in June because I want to try LDN ( low dose naltrexone) for another autoimmune disease that was recently diagnosed. It wasnt easy, took 6 weeks and I'm glad I did it. I was afraid of how bad the pain would be without Percocet. I don't have the ability to stay on my feet as long, my back gets "tired" more quickly. I can't do things that I did while on pain meds but it is okay. I'm retired, widowed and don't have a demanding schedule so it may be easier for me to cope without pain relief. I don't take Tylenol or any OTC drug for pain because of an excess of caution. I do use Pennsaid topically. It is a combination of DMSO and Voltaren and it does help some. I'm hoping the LDN will help relieve joint pain from the Sjogrens and hopefully with arthritis pain.

I didn't have any problem with constipation or compaction while taking Percocet along with Entocort at the 3 mg level. My CC is in remission. I am on a modified Paleo diet, GF, DF, SF, EF diet. Since being diagnosed with Sjogrens Syndrome it is important to me to try to ameliorate those symptoms. LDN is being touted as something worth trying.

You are getting excellent direction here from Tex, Polly and all the Potty People. Good luck.

Sheila W

[TREESE]

Thanks going out to Jari and Sheila for their Replies on my above posts!

Jari, yes, that Archived Post about the EnteroLab Tests really did relieve my mind!

And Sheila, sharing about your Meds and struggles is much appreciated. I do empathize with your situation, believe me, and I know you do with mine. May I ask about those Meds you mentioned?

I do use Pennsaid topically. It is a combination of DMSO and Voltaren and it does help some. I'm hoping the LDN will help relieve joint pain from the Sjogrens and hopefully with arthritis pain.

What is Pennsaid and how does one use it topically? Is it a prescription drug? I am not familiar with DMSO or Voltarin, so I really have no understanding of either. My Doctor has only prescribed either Percacet or Vicodin for me in the past. Now, Tramadol and Tylenol, but I haven't taken even one yet. Trying not to unless it becomes unbearable. Thank you, Sheila!

TREESE

[Sheila]

Treese,
DMSO is an organosulphur compound that is frequently used as an analgesic by complementary medicine practioners. Voltaren is a topical anti-inflammatory. By combining these two you get Pennsaid, an anti-inflammatory that is transported to the tissue beneath the application point. I have been using it for osteo arthritis and bursitis. I took Celebrex (oral anti-inflammatory) for several years and got gastritis. I can no longer take any oral anti-inflammatory.

LDN is low dose naltrexone. It is used off label to help deal with symptoms of auto-immune diseases such as: crohns, multiple sclerosis, fibromyalgia, Sjogrens, etc. We have two people that I know of with MC who have done very well on LDN. Low dose naltrexone dosage is between 1.5 and 4 mg a day or every other day. When used on label, the dose is 50 mg. It is an opioid antagonist and you cannot take it if you are taking a narcotic pain killer. That is why I stopped taking Percocet.

I hope this helps, Treese. Pennsaid is a prescription medication and you will need a prescription as is LDN.

Sheila W

[TREESE]

Good Morning, All - Sheila, I thank you for the Info on the MEDS. I have made Notes for myself and will explore those treatments to see if they might be helpful for my own Back situation.

You are a brave and most courageous woman and I admire your attitude toward your circumstances! Thank You!

Peace,
TREESE

[Sheila]

Treese, Once you receive your Enterolab results you will have a very good idea of what foods etc you will need to avoid. There is a lot of trial and error with MC because we all have different issues. Keeping a food diary helps in the beginning, too. Be patient, carefully read food labels and whenever you have a question, this is the place to come to.

I noticed you asked about a bread machine. My sweet late husband bought me a Zojirishi bread machine after seeing what our old bread machine did to GF bread. Inedible. There is a cookbook called, I think, "125 GF bread machine recipes", that has some very good recipes. After the bread cools, cut it into slices and freeze. I put a double layer of waxed paper between each slice to keep it from sticking. GF bread is usually much better when toasted. It tends to crumble otherwise.

Sheila W

[TREESE]

Sheila, HI!

Thanks for the Info on the Zojirushi Bread Machine! I know it's expensive, but the people who recommend it seem really happy with it, including yourself. It has a special setting for GF Bread Making, right? I will have to save up my money again, so I can maybe get one by Christmas or so. Maybe even sell some stuff on e-Bay to put towards the cause! It'll work out somehow!!

Thanks, Sheila!
TREESE

PS This forum has actually altered my life! I am seeing in a whole new way and learning things that are truly beneficial. Not just for CC sufferers, either. Everyone in general should be made aware of what is being discussed here. The Public is sooooo in the dark about their own health, it's just a sad shame.

[Sheila]

You're welcome, Treese. The Zojirishi has double paddles for mixing instead of a single paddle. It makes a big difference. Check eBay for a used Zojirishi.

This forum is a life saver. I would have been floundering, getting little help from my GI doc. Once I had basic information from this forum, my GI got on board. Even though I'm in remission, I check in here frequently. There is always something new to learn from these wonderful men and women.

Sheila W

[tex]

[TREESE]

QUESTION: What do you think about QUINOA? I'm considering giving it a try. Do I need to be in full remission before I do? I didn't test as sensitive to anything other than Gluten and slight reaction to oats and walnuts cashews.

Thanks,
TREESE PS In response to your thoughts, Tex, on people waiting so long before finally changing their diets, what I feel is Also behind newcomers reluctance is FEAR AND DENIAL. To change their Diets early on in their diagnosis brings up a lot of fear over such an extreme loss of a lifestyle; one they have most likely lived all their Holidays and Best Memories and Special Occasions through. FOOD! Food is so Central to all our Cultural Norms and Celebrations> Not being able to take part in such Rituals of Belonging is to separate one's self from most of all that has been familiar to a person from childhood. It is in a sense a loss of the Social Group to which we belong, family-wize, friend-wize, celebration-wize, even social dining out or dating-wize. Just my added reflections...

[Sheila]

Treese, I tried quinoa when I was healing. The Paleo diet seemed to work best for me but I was losing too much weight. I tried adding back rice and quinoa. If I don't eat grains too often, I'm okay, once or twice a week seems to work. You may be able to tolerate some grains, give it a try.

You're exactly right about food being central in our lives. For many of us it's not just gluten that causes problems and expecting family and friends to prepare food that is GF, SF, DF, EF etc is just too much of an imposition. My favorite "take-along" meal is similar to tabbouleh but made with quinoa, and with the addition of shrimp. A Paleo muffin is also a good "take-along" snack. The muffins are filling, keep well and taste good.

I noticed you had a spinal fusion. Me too, 2007. Hope yours was successful.

Sheila W

[TREESE]

Thanks, Sheila - I do already eat rice and potatoes, so that being so, hopefully the Quinoa will be a good ADD On, then.

Spinal Fusion was a success, Yes, but the Surgeon IS concerned that my bones will suffer from my already existing Osteoporosis PLUS the added burden now of weight loss. The screws and plate in my Spine need strong bones to keep them firm. Guess that's a big part of my concern.

How are you and your spine doing through all this?

TREESE

[tex]

Treese,

Quinoa is a nutritious, gluten-free seed (it's not a grain). It has the problem of tasting rather bland, so it helps to enhance the flavor a bit when preparing it. The biggest problem with quinoa is that traditionally, growers in South America who produce it, have to harvest it before it ripens, and dry it in the sun. To speed up the drying process, many of them traditionally mixed the quinoa with grains (such as barley). Since barley and some other grains are sources of gluten, that means that some of those grains were not completely removed from the quinoa during subsequent processing/cleaning operations, resulting in cross-contamination that caused many celiacs to react.

This risk can be avoided by purchasing only Kosher brands of quinoa.

Yes, I realize those are the reasons why so many people are reluctant to change their diet, because I have to deal with the same inconveniences. But we have to make a choice for our future — do we want to continue to pretend to be "normal", and try to live a "normal" life, even though we're slowly destroying our body by doing that? Or do we respect our body and our health, and do what we have to do? And that doesn't even consider the fact that if we continue to fail to properly treat the disease, we will be punishing ourselves every day by forcing ourselves to put up with the symptoms, just so we can pretend to be "normal". The answer was a no-brainer for me, but obviously that's not the case for everyone, and I can certainly understand that. It's not such an easy decision for many, especially if they are not sick enough that they feel compelled to do something about it.

As I said, I feel lucky that it was an easy decision for me, because I couldn't continue to live that way. It was absolutely miserable and debilitating.

Tex

[Sheila]

Treese, My fusion, my second back surgery, was successful in that intolerable pain was relieved and I'm able to lead a fairly normal life. My back gets "tired" if I'm on my feet too long and "tired" becomes pain if I don't sit down. I don't have osteoporosis, just lousy joints, and my weight is pretty stable, tending to be too thin. I was told the fusion puts additional stress on the vertebrae above the level of the fusion. So, I try to be careful.

Keeping my back healthy requires trade-offs, just like MC. I gave up anything that could endanger the stability of my back. You are doing so well, intelligently dealing with MC, I'm sure you are doing all the right things for your back. Keep doing what you're doing and you will achieve remission.

Sheila W

[JFR]

I'm another person with a spinal fusion which I had in 2001. It was also my second back surgery. It has been a great success. I have almost no problems with my back except a little stiffness that works itself out after I start moving. I don't have osteoporosis. I am very careful with my diet which is low carb paleo and avoids all my food sensitivities. I worry about putting weight on which low carb eating prevents, so no grains or starchy vegetables for me. It takes time to figure everything out and for healing to take place but it is certainly achievable if you persevere.

Jean

[TREESE]

Just seeing these Posts now, Jean and Sheila... Sometimes I seem to miss seeing all the Replies to a Post I made, so if I Ever don't reply back, please pardon me.

Thank you for sharing your spinal issues and information with me. Since the surgery, Sheila, I, too, feel the strain if I stand too long, followed by the pain if I don't respect my body's fore- warnings and go lie down for a while. But, sitting is not the best for me, since it sometimes causes spasms. But I'd rather do my fidgeting routine any day than have to be on pain meds again, like Before the surgery. So, I have cushions with the tail bone part cut out for when I sit, and I have a good new mattress for laying down on. I carry those cushions everywhere I go, to. And Jean, I believe what you say that it all takes time to sort it out, but it does get sorted out eventually.

Ladies, I do keep your kindness in my heart wherever I go and prayerfully hope for your health to always be improving. Thank You!

TREESE