Saturday, August 29, 2009

Irregular Doses and 3 Pounds

For the past 2 days I've had a late breakfast, about 11 hours after my late night dose of vancomycin. For the past 2 mornings I had nausea, chills and more gut pain. So I suspect waiting too long between late night and breakfast doses allows the c-diff spores to retalite, because nausea, chills and gut pain are definitely recurrent c-diff symptoms.

I scheduled an appointment with my doc next week, 12 days into this 2 week course of vanco. If I'm not completely symptom free by then, I may request another 2 week round of vanco. However, I'm also concerned about possible hearing loss from longterm vanco use. I've noticed some ringing and fullness in my ears occasionally since starting vanco. I hope I can kill the c-diff before vanco destroys my hearing.

Also I continue to weigh an extra 3 pounds. Some people may ask 'what's the big deal about 3 pounds?' However my weight hardly ever varies by more than a pound. I gained those 3 pounds during my flagyl treatment, when I was eating for nausea, rather than hunger, and didn't really feel hungry. A 'normal eater' might lose weight when they felt nauseas and not hungry. However with a history of emotional 'comfort' eating, I easily returned to using food to distract myself from emotional frustration (about flagyl side effects) and fears (about c-diff complications).

Those 3 extra pounds tell me that I am STILL eating when I'm not hungry and continuing to eat past full. Although I have cut back a little, I still snack on 'low calorie' fruit like cantaloupe or grapes, because I enjoy the sweet taste and rationalize that it's low calorie. SIGH Nevertheless all those extra bites add up and sustain those 3 extra pounds.

I often feel unsatisfied after meals, even though I feel full. Because I want another sweet taste to feel 'satisfied', I go for fruit like cantaloupe, grapes and dates (which I can limit to one). However, if I just ignore that unsatisfied feeling for 20-30 minutes, I feel satisifed and really don't want any more food. I NEVER want to eat after dinner at night, beyond that one medjool date. Yet I suspect that I could just stop eating after I feel full and feel satisfied within 30 minutes if I just waited for my digestion to raise my blood sugar. That might eliminate enough extra food to lose a few extra pounds. Only eating when I'm physically hungry and stopping as soon as I feel slightly full would also prevent gaining more weight.

Thursday, August 27, 2009

Much Less C-Diff Bloat and Pain

After almost a week of vancomycin, I finally got heavy duty antibiotic diarrhea. I suspect taking my high dose probiotics, before I started this round of vanco, prevented diarrhea during the first 6 days of vanco. So this diarrhea means my good bacteria levels are very low now. I also noticed that I'm getting bruises very easily again, which also means my good bacterial levels are low. At least half of our Vitamin K, which controls bruising, is produced by good bacteria in the gut. Spontaneous bruising usually means my good bacteria are deficient.

I'm taking the lower dose (8-12 billion live organism per capsule) probiotics with dinner every night. However, I could have forgotten to take that last night. I have so many pills (with vitamins, minerals, HCl and vanco) to take with dinner that I may have forgotten. Of course the good news about diarrhea is I lose the c-diff belly bloat and gas. I still have cramping pain before every 'd' episode, but that's better than constant cramping pain.

Over the weekend I shopped for dresses, after I saw a sale at my favorite store. One of the knit dresses had a fitted bodice, with a knot, which put a drape down the front over the tummy area. I still had c-diff bloat that day. So I LOVED that dress and bought 2 in that style. Unfortunately they didn't have my size. However, in order to use the sale coupon, I bought one dress in navy blue in my size and the other in a pattern in a larger size. So I could take the larger dress to exchange for my size at a store which did have my size in the pattern dress. I later noticed a flaw in the blue dress and also decided to exchange that dress.

Yesterday I went to pick up the correct size of the pattern dress which another store was holding and exchange the blue dress. That store was close to where I used to live and my closest friends/neighbors still live. So I planned to visit them and take them tomatoes from my garden.

However when I entered the store I noticed dresses which my local store didn't have. Because I no longer had c-diff bloated I was attracted to several more fitted dresses. How many 'bloat' dresses do I really need if I intend to eliminate c-diff and its bloat symptom? After trying on several dresses and much indecision, I decided to get a more fitted blue/black pattern dress with a very unique neckline, the correct size in the looser patterned dress and another fitted snakeskin pattern (beige/brown/cream/gray) dress with a surplice bodice. Amazingly, I exchanged my original 2 dresses for those three dresses and saved $11.50, because the 2 fitted dresses were less expensive than the looser dresses. I was pleased with my choices.

When I finally arrived at my former neighbors' house, they were both home. Then I had a nice long chat with them. They loved my tomatoes and gave me some fresh peaches, which I enjoy for breakfasts with cereal. Although I visited my friends for over an hour, I was able to drive home before the afternoon commuter traffic jams. So I had a great day!

Tuesday, August 25, 2009

Microincremental Improvement Daily

I'm NOT seeing a huge difference in my symptoms during this second round of vancomycin. After 5 days my stomach doesn't hurt after every meal and my intestines aren't constantly swollen and tender to touch. I went from fecal urgency (feeling like I have to go all the time) to fecal frequency (if that's the term) or going about 6 times already today, rather than my previous 3-4x for the whole day.

I also stopped worrying about making my last vanco dose evenly spaced (5 hours) after my dinner dose. I'm just too exhausted to stay up that late. I also don't want to set an alarm to wake up to take a pill. When I turn out the light, I don't want anything to bother me. I usually sleep straight through 8 hours, unless bad gut pain awakens me after 6-7 hours. WOW!! That's another improvement. Light, not bad gut pain, woke me this morning.

Maybe I forgot how bad I felt when I started the last round of vanco. So I'm expecting to feel better faster. However, I'm still uncertain whether I'll be completely symptom free after only 2 weeks on Vanco. I still had symptoms after one week, but I confused those with probiotic side effects. I won't do that again. I definitely won't take high dose probiotics until I'm certain I'm recovered from c-diff.

I also learned that my cousin contracted and recovered from c-diff during her 5 month hospital stay. She took vancomycin for a MONTH before that eliminated her c-diff. She was tested before and after treatment. I only have my symptoms to tell me whether I recovered.

I also sometimes doubt my symptom awareness, because my doc discounted my gut symptoms for 2 years in a row (when I had obvious signs of first a parasite and then c-diff). I keep wondering when he's going to tell me that I must be recovered by now and that my symptoms are really just 'stress'. GRRRRR!!! Maybe he finally learned his lesson not to discount my symptoms after he realized I actually had serious infections. I learned that I have to strongly assert my needs. So I can't let doubts keep me from asking for another round of vanco, if I still have symptoms after another week of this prescription.

Friday, August 21, 2009

Send In the Calvary

I picked up my vancomycin prescription early this afternoon. I experienced a slight delay at the pharmacy. They couldn't find vancomycin, although their computer told them they had 73 pills. Finally they found 30 (out of 56 for 2 weeks). So I carried those home and then took the first pill with lunch. After 3 hours I realized all my previous symptoms were caused by c-diff, NOT the high dose probiotics, because the fecal frequency (feeling like I had to go all the time), bloating, cramping pain, nausea and dizziness disappeared. I still had some intestinal tenderness. I felt WONDERFUL for a couple of hours until I needed to take the next dose. I will take vanco with higher fat meals for a few days until my body adjusts to vanco. I'm uncertain whether it causes nausea or all the nausea is c-diff related. However, I know for certain that the probiotic did NOT cause all that pain and bloating which began a few days after I finished 7 days of vanco.

During lunch the pharmacy called me to say that they found the rest of my prescription order (the other 26 pills). I told them I'd pick those up next week, because I have enough for a few days. Besides I already planned to blanch and freeze zucchini from the garden. I picked those yesterday and couldn't wait another day.

I don't know whether 2 weeks of vanco will kill all the c-diff. So I plan to see how I feel after finishing the prescription. I won't begin high dose probiotics until I know whether the c-diff symptoms will return immediately. I had hoped taking those would prevent recurrence of c-diff. However, I learned that, if the spores are still active, the probiotics won't stop c-diff from attacking my intestines again.

Unmistakable C-Diff Symptoms

I went from cramping pain and bloating last night to overwhelming nausea, dizziness, chills and passing mucus this morning. So I called my doc's office twice to leave messages that my c-diff symptoms returned and I needed another, longer round of vancomycin. Then my doc's receptionist called to tell me he was out of the office today. However, she contacted him at home. So he will call a prescription for 2 weeks of vancomycin into my local clinic pharmacy. That's the good news.

The bad news is I doubt I will be well enough to go to Maui on October 6. Despite my orthodontist's efforts to get my teeth realigned and restored before my trip, I suspect I will need to cancel our plane and hotel reservations. I seriously doubt that 2 weeks of vanco will eliminate the c-diff. I may need even longer treatment. C-diff is a really tough bug to kill.

Ironically I may have contracted c-diff after treating Candida with nystatin for an extended period. Most c-diff infections occur after antibiotic use, but some occur after antifungal treatments. Every drug has side effects, immediate, short term and long term. I hope I don't get any long term side effects from vancomycin EXCEPT eliminating c-diff.

Even more ironic is the fact that my c-diff symptoms became much more obvious in April after I stopped bingeing and purging in March. I now understand how I would want to overeat to cope with nausea and also throw up when food didn't make the nausea better. I have that situation right now. I thought eating a small breakfast would help with nausea this morning. However, not even ginger tea touches this nausea. I'll just keep busy to distract myself until I can walk in the cool air to my pharmacy to pick up my vancomycin. The sooner I can start taking vanco, the sooner I can begin to fight the c-diff bug which causes these awful symptoms.

Thursday, August 20, 2009

More C-Diff

48 hours after completing the 7 day high dose probiotic treatment, which followed my 7 day vancomycin treatment for c-diff, cramping pain, bloating and fecal urgency convinced me that c-diff spores are rampant once again in my intestines. Rather than just left lower abdominal pain, I also have right lower abdominal pain. I hesitated to assess my symptoms while taking the high dose probiotics, because those can cause bloating. However I usually don't get pain and bloating for 24 hours after taking those probiotics. Also as soon as I finished the 7 day probiotic treatment and returned to lower dose probiotics, I knew my symptoms were more c-diff.

So I just emailed my doc to request another, but extended round of vancomycin. I didn't get any bad side effects or any less dangerous but bothersome symptoms from vanco. I know I can easily take that again. I also learned that I don't need to take that with food, just a tall glass of water. So I can space the doses out evenly without needing to stay up late at night to get the last dose evenly spaced after dinner. I just hope my doc is in the office tomorrow. I don't want to spend a weekend suffering and wondering when he can call my prescription to my HMO pharmacy.

Reality Check

On Monday morning I weighed a pound less that I had weighed during the rest of this month. So I believed I was finally beginning to lose the 3 pounds I gained during treatment for c-diff. Confident that I was doing whatever I needed to lose weight, I stopped weighing for a few days. After all many 'normal eating' experts suggest that we only weigh once a week. Only on very restrictive diets do we notice weight loss every day.

To my surprise (and disappointment) I had regained that lost pound when I weighed today. Nevermind that I ate more salty foods during the past two days. Nevermind that I ate half a fudgesicle while sweeping the garage, I consumed extra licks of peanut butter and almond butter while transferring both to smaller containers, I ate dessert after dinners when I felt full and I have eaten to the point of obviously full for the past few days. Obviously I can easily fall back into the same habits that made me gain the weight, especially when I feel confident that I'm eating just enough to lose weight.

My husband weighs almost every day. He says daily weighing keeps him honest. I agree. I'm not really overweight according to most height/weigh charts. Some of my clothes fit (but not all). I can easily compare myself to other people and think, 'why bother losing 3 pounds'. Then I see all the clothes that don't fit as well with 3 extra pounds. I have not binged for almost 5 months now, but I remember all the 'almost binges' where I overate to the point of feeling stuffed, but stopped before I purposely binged and purged. I can easily forget all the reasons I gained the weight and continue to hold onto that extra weight. I can ratioinalize that I'm eating healthy food. However that number on the scale reminds me that I'm just eating too much healthy food at meals and eating snacks (or licks and tastes) when I'm not really hungry.

Seeing that number on the scale won't throw me into restrictive diet mode. I know that extreme restriction just leads to extreme deprivation. Acknowledging extra weight won't 'trigger' a binge/purge episode. I'm waaay beyond that mindset. I don't like feeling too full and I abhor throwing up. Realizing that I either didn't lose a pound or I regained a pound doesn't even make me feel upset. If I'm well (recovered from c-diff), I will STILL go to Maui. I just want to weigh 3 pounds less to fit into more of my clothes. Those 3 pounds remind me that I'm not eating only when I'm hungry. I may start eating when I feel hungry, but I don't stop when I feel satisfied. I'm wasting food by overeating and that 'waste' goes to my waist. LOL So I intend to weigh daily (same time, same state of dress) for the next 6+ weeks. If the scale does nothing else, it will give me a daily reality check.

BTW I still don't know whether I'm recovered from c-diff. I stopped taking high dose probiotics 2 days ago. Now I take the lower dose (8-12 billion good bacteria per capsule) probiotcs once a day and hope for the best. I still have some cramping pain, but the location changed. Before c-diff treatment I had left lower abdominal pain. Now I have right sided pain and nothing on the left. I also still have soft (normal) stools, but I also have frustrating frequency (I go 4-5x a day). Nevertheless I feel more energetic, absolutely no nausea and undecided. I really don't want to go back on vancomycin, if I don't have constipation (one of my main c-diff symptoms). So I will continue to 'wait and see'. I've read so many c-diff websites that say taking lots of probiotics can prevent recurrent c-diff infectioins. So I'll just keep taking lower dose probiotics and pray for healing.

Sunday, August 16, 2009

Changed Perspective

Fighting a potentially lethal bacteria (c-diff) changed my perspective about what is important in my life. While I took flagyl to fight c-diff, I felt too sick to do much more than post on my FTGF board. When I finished the first round of flagyl, I no longer wanted to feel obligated to moderate a board. I also felt less sympathetic toward people who complained about overeating, going off their weight loss diets or fantasizing about food, when I was struggling to eat anything, while flagyl made me so nauseas. When my c-diff symptoms returned and I realized the flagyl didn't eliminate the c-diff, I was scared that I would never recover from c-diff and could develop life-threatening complications. My health problem was much bigger than my appearance or my weight. Some people who posted about overeating on message boards just didn't relate to my fears or struggle to keep eating to take medication. Because I didn't have the emotional energy to support others, I decided to delete my board.

After I got even more c-diff symptoms while taking the second round of flagyl, I felt even more frightened and hopeless about recovery. So I asked several friends and my church congregation to pray for me. Fortunately my doc switched me to vancomycin, which had good side effects (no more constipation). Meanwhile the flagyl side effects (nausea and horrid metallic taste) slowly disappeared. Although I was afraid to hope for complete recovery, because my hopes had been dashed so many times, I felt stronger while I took vanco.

When I finished vanco and began high dose probiotics, I developed a new set of symptoms which made me doubt whether I would recover from c-diff. However, I soon recognized those as signs that my body was adjusting to a larger population of good bacteria in my intestines. So I decided to suspend judgment about my recovery until I finish the high dose probiotics.

This 5 month struggle with c-diff (symptoms, stool test, diagnosis, treatment and probiotic followup treatment) reduced my goals to just getting through each day, taking each treatment dose with meals, exercising, doing minimal chores around the house or garden, and getting enough sleep at night. I knew I was gaining weight, because I ate when I was nauseas as well as when I was hungry and needed to take pills. I also ate to distract myself from the taste of flagyl. Then while on vanco, I ate a 4th small meal to prevent stomach irritation from vanco with my last bedtime dose. I did not eat much less at the other 3 meals to compensate for the 4th meal. However, I chose to focus on doing what I needed to take drugs to treat c-diff. I believed I could lose weight after finishing those drugs.

Now I would like to lose 3 pounds before we go to Maui, IF I am well enough to go to Maui in October. I don't need to cut back much to lose 3 pounds in 7 weeks. I just need to focus on eating comfortable amounts when I feel hungry and not eating when I no longer feel hungry. My garden almost dictates what I eat. We have soooo much lettuce, zucchini and cherry tomatoes that we need to eat salads almost every night for dinner. I have sooo many blueberries and still some strawberries that I need to eat berries on my peanut butter and muffin for breakfast every day. Larger tomatoes suggest tomato and ham sandwiches for lunches. Maybe I will tire of my 'garden harvest' diet after a month or so, but right now I LOVE eating fresh picked berries and vegies at every meal.

Nevertheless, my c-diff experience has taught me to 'not sweat the small stuff'. I'm calmer. When I know what I need, I can confidently ask for that. At other times, I'm open to suggestions and go with whatever my husband wants. I no longer get upset or feel threatened by differences of opinion or viewpoints. Maybe wondering whether I would recover from a potentially fatal bacteria made me appreciate simpler pleasures, like sunshine, gardening, preparing a meal, playing my piano, walking or biking with my husband. Meeting my physical needs for exercise, food, elimination and rest seem more important than accomplishing anything really meaningful with my life. Just being a supportive wife or friend or neighbor seems like enough for now. Maybe a year from now my c-diff experience will seem like a bad dream. Maybe I will work toward bigger goals or accomplishments. However, right now I prefer the most peaceful path I can find through each day's challenges. If I'm healthy, nothing else really matters that much.

Friday, August 14, 2009

High Dose Probiotics

For years I struggled with constipation. Everyone told me eat more fiber, drink more fluids, eliminate food allergies, take probiotics, take magnesium and vitamin C, drink apple juice, etc. I did all those things and still had constipation, when I had bacterial imbalances in my gut from bacteria, parasites and fungus. Most recently I took flagyl and then vancomycin to treat c-diff. The first week of flagyl turned my constipation into loose stools. However that returned to constipation, bloating and pain after a few weeks. The second round of flagyl did not resolve that constipation. After one day of taking vancomycin for c-diff, I developed really loose stools. I never had watery or bloody diarrhea, but I did have more frequency. Now 3 days after ending vancomycin treatment, I still have loose stools, which may be 'normal'. However, after years of constipation, I really don't know what 'normal' should be for my body.

Despite all that, I gained 3 pounds while fighting c-diff and enduring treatment side effects from flagyl and following instructions to eat when I took vancomycin (which I didn't need to do). So now I want to eat less to lose that excess weight. However, I still think about eating 'enough fiber' for regularity, despite my current loose stools. I'm drinking lots of fluids so I don't get dehydrated from my 'almost' diarrhea, but I'm also rationalizing eating extra bites of fruit (when I'm not hungry), because fruit helps regularity. Yesterday I cut back on vitamin C and magnesium. That reduced the 'frequency' during the afternoon, but nothing else changed.

Many vancomycin sites warn patients to tell their docs if they have severe diarrhea which continues after they stop using vanco. I didn't HAVE diarrhea when I started using vanco. I had just the opposite problem. So I'm not anxious to get rid of my 'almost' diarrhea. Compared to constipation which causes bloating and hemorrhoids, I really don't mind loose stools, even with frequent bathroom trips. Maybe someone else would call what I have 'diarrhea', but I'm not too alarmed.

I also have more gas and a little bloating after meals. At first I was concerned. Then I remembered that those high dose probiotics cause much more gas and bloating, while the good bacteria repopulate my intestines. So I really can't assess how I'm doing until I finish the 7 day course of high dose probiotics. Those should make me more 'regular', neither diarrhea or constipation. So I just need to wait and see how I'm doing after I finish the probiotics.

Wednesday, August 12, 2009

Back to Just Enough

I weighed this morning, the same as I weighed one week ago, when I was 3 pounds above my usual weight. Fortunately I didn't gain more, while eating high fat foods 4x a day to take the vancomycin. However I definitely overate. I know I had at least 2 'almost' binges, where I started snacking after a meal but stopped when I felt obviously full. Knowing that I have abstained from bingeing and purging for 20 weeks kept me from saying 'oh what the heck, I might as well binge' after I felt guilty about overeating. Nevertheless, I need to eliminate those 'almost' binges by just stopping when I finish my meal and not snacking while I prep dishes for the washer. Also I suspect I was not tuned into what I really wanted to eat at meals which preceded my extra snacking. So I wasn't satisfied by the meal and continued to look for satisfaction through snacks.

I won't diet or restrict what I eat, but I will limit how much I eat by not dishing up so much. So I may have open faced sandwiches and more sweet fruits than sweet desserts like ice cream or cookies. I won't abstain from those desserts, but I'll have cantaloupe (my current favorite) handy in the fridge all the time. Also I need to increase my activity. I already walk at least an hour a day and do yoga and weight lifting. However, I can add gardening and playing ping pong at night after dinner. Neither seem like 'exercise', but both are more active that sitting at this computer. LOL

Above all I need to wait until I'm actually hungry to eat, which I prefer because food tastes better, AND only eat enough to stop hunger sensations, rather than feel obviously full. Serving myself smaller portions and eating mindfully will also help me eat less but feel more satisfied.

Tuesday, August 11, 2009

Probiotics Helped

Taking an extra probiotic capsule (8 billion good bacteria) at breakfast resolved my problem of riboflavin deficiency (evidenced by sores in the corners of my mouth) and vancomycin induced diarrhea. Of course I felt bloated all day and all night after taking another probiotic capsule, but I don't have obvious signs of low good bacteria. I do still have bloat 1-2 hours after every meal. I suspect that's caused by the vanco itself. I get a little cramping pain, some fecal urgency (but not really going) and bloating awhile after taking the vanco. I don't know whether that means it's eliminating the c-diff or that the c-diff is winning. I hate not really knowing what's going on, but I'm not anxious to spend another $300 for a stool test to determine whether I still have c-diff. I'll just pay attention to how I feel.

Also I realized after taking the vanco capsule with just water last night that I never really needed to eat a high fat snack or anything to take the vanco. A large glass of water was enough to prevent burning stomach pain. I could also drink more water to eliminate any burning sensations. I wonder why that pharmacist told me I had to eat high fat foods to take the vanco. All the other info just said take with full glass of water. Maybe she thought I looked thin and needed to gain some weight. Well, compared to most overweight people working for my HMO I do look thin.

However now I need to decide how to lose the extra fluff around my waist. I will weigh tomorrow morning and assess the damage. At the very least I need to eat more mindfully, especially limit eating to sitting down. I don't really enjoy the food I eat standing up while preparing the meal, as much as I enjoy eating the meal. Those stand up bites still reduce my hunger, so I can't eat as much as I planned without overeating at the meal. However, I've also done lots of overeating beyond satisfaction during the past week on vanco and the previous 17 days on flagyl. I sure hope all that treatment eliminated the c-diff bug, becuase I'm tired of enduring side effects from treatment and comforting myself with excess food. Even if I'm well enough to go to Maui, excess weight will make me feel uncomfortable in hot weather (skimpy, revealing) clothes.

I don't want to restrict WHAT I eat, because that just sets me up for rebellious or 'last supper' binges om all the foods I restrict. I already have restrictions from 7 food allergies. Also I've abstained from bingeing (and purging) for 20 weeks now or almost 5 months. However all those 'almost' bnges, when I stopped myself after overeating before actually bingeing, contributed lots of excess calories. I need to change WHEN I eat or only when I'm hungry and stopping as soon as I feel satisfied or just barely full. That will also eliminate the reflux I have experienced lately when I overeat.

Above all I need to change HOW I eat so I only eat sitting down. No more snacks while I prepare what I really wanted to eat. No more afterthought desserts standing in the kitchen doing dishes. No more samples at the grocery store, just because the food is free. I intend to sit down and focus on how hungry I feel, how the food tastes and whether I'm satisfied.

Monday, August 10, 2009

Really Bloated Today

OK, now I have true diarrhea. According to my nurse neighbor, that's a good sign which means vanco is wiping out the c-diff. However, cracks in the side of my mouth, which are a riboflavin deficiency sign, concerned me a little. I already take 50 mg of balanced B vitamins with every meal. So I suspect I'm just not absorbing B vitamins due to depleted good bacteria. So I decided to take another probiotic with breakfast to decrease the diarrhea and increase riboflavin absorption.

The bad news is that probiotics cause bloating and gas. I usually take them after dinner at night, especially when I plan to stay home (and wear baggy clothes). However the weather is cooler today. So I'm wearing jeans, which are supposed to be medium rise, but with my long torso fit me like low rise. However, my probiotic bloat creates the 'muffin top' over my jeans. LOL No matter how thin I look, I feel 'fat'. I know I'm just bloated, but that doesn't change how my inflated belly looks or how my clothes fit.

As for actual weight, I refuse to weigh until after I finish this vancomycin treatment. I was at the top of my normal 3# range when I started this drug. Then I had to eat high fat foods 4x daily to protect my stomach supposedly from vanco stomach irritation. So I won't be surprised if I gained more weight. Last night I took vanco after drinking hazelnut milk and eating some cantalope, which was not very 'high fat'. When I felt a little stomach sensitivity, I just drank more water. Then I slept just fine.

Tonight I plan to get in bed earlier, read until I'm sleepy, which should be about the time I need to take my last vanco dose, and take it with a full glass of water, but no bedtime snack or maybe just fruit. Either my stomach adjusted to the vanco 'stomach irritation' or I could have just avoided that by drinking lots of water when taking the capsule. Whatever ... I will have to deal with weight gain AFTER I finish the vanco, starting Wednesday with weigh in. Then I can resume obeying my hunger/fullness cues to eat only when I'm hungry, whatever I crave, and stop eating as soon as I feel satisfied, rather than eat high fats on a pill taking schedule.

The good news is that the cramping pain I experienced during the past 3 days has all but disappeared. I hope that means the vanco has overcome the c-diff bacteria. I can only wait and see after I stop the vanco. However, I'll also take a higher dose probiotic as soon as I finish the vanco. That probiotic may cause even more bloating during the day, although I will take it with dinner. More feeling fat ... SIGH

Sunday, August 9, 2009

Less Cramping Pain Today

Slowly the cramping pain decreased over the past 3 days. That pain is in the left lower quadrant, but actually feels like the junction between the tranverse and descending colon. Because the pain got worse after meals, but slowly diminished before the next meal, I suspect it's related to vancomycin. Maybe that's the 'belly pain' which the pharmacy info described as possible (but not dangerous) vanco side effects.

Mostly my attitude changed from fear to acceptance of the cramping pain, after talking to my neighbor who's an internal medicine nurse. She's familiar with c-diff, flagyl and vancomycin. She said I should just endure soft stools and diarrhea, because that means vanco is fighting the c-diff. Although there are drugs like vicodin or bentyl for ibs like gut pain, most of those are anticholerginic, which could cause constipation, one of my original c-diff symptoms. While I'm fighting c-diff, diarrhea means the body is ridding itself of the bacteria. However I suspect that I don't get severe diarrhea, because I take probiotics, which positively affect gut motility. Those same probiotics keep me 'regular' even with hard stools.

My neighbor also reassured me that the pain could also be from vanco fighting the c-diff infection site. So I just kept drinking my peppermint tea and lots of liquids, while I ate easy to digest foods. The pain decreased even more today and was only slight after dinner today. I had more frequent stools, than pain tonight.

Best of all, the metallic flagyl taste FINALLY disappeared after a week, just like last time. Foods taste much better and I actually feel hungry for meals. I still dislike having to stay up late to take my last vanco dose. I don't seem to get my dinner dose before 7 pm. So I need to wait at least 4 hours to take the next dose. I'm tempted to eat ice cream with that dose tonight, but I want to try taking it with hazelnut milk at least once. Last night I took it after eating about 1/3 cup of ice cream and had almost no stomach sensation from the vanco.

2 more days on Vanco after tonight ... I sure hope this eliminates the c-diff. However, vanco was fairly easy to take, despite that 4th late night dose, compared to flagyl. I didn't need as much high fat foods as I was led (by the pharmacist) to believe. Or maybe my stomach adjusted to the vanco, so I reacted less. I'll see how taking it with hazelnut milk works tonight.

Saturday, August 8, 2009

Bad Reaction to Something

After lunch yesterday I experienced cramping pain. I had eaten several (4-6) small cherry tomatoes from my garden, and a ham, tomato and lettuce sandwich with 3 rainier cherries for lunch. Then I walked to Whole Foods, where I ate another 2 grapes and 2 more small cherries. By the time I got home I still had some pain and a little bloating. I felt well enough to attend the musical ('Catch Me If You Can'), but decided to wear a looser dress, with just a slip, no nylons with sandals, because I was bloated.

For dinner I had some leftover chicken with red sauce (and vegies) from a favorite Mexican restaurant and a few tortilla chips. I also took my daily probiotic, which can cause some gas and bloating. However I need to take that to compensate for the good bacteria which Vancomycin kills along with c-diff. Sometimes eating helps push gas through my gut, but not this time. I felt even worse cramping pain on the way to the theater.

While sitting during the musical I had excruciating intestinal pain with some bloating, maybe an 8 on a 1-10 pain scale, very similar to what I used to get from gluten reactions. Sitting in the bathroom during the intermission didn't help much. So I told my husband I wanted to go home. He suggested we walk around the lobby up and down stairs to see whether walking relieved the pain. The pain increased with walking. So we drove home. I sorely regretted depriving my husband of the second half of the musical. Maybe I should have taken a taxi home. However, I knew I couldn't endure another hour of sitting to watch the musical.

When we got home I made peppermint tea, which helps relieve gut cramps. That helped a bit. Just standing helped a bit. However I still had to eat something to take my last vancomycin dose. I didn't want any solid food. So I ate about 1/2 cup of coconut mango ice cream and took the vanco. I didn't feel much better, but at least I got my last vanco dose for the day. Then I went to bed after I raised the upper and lower parts of the bed. That usually helps with gas pain and bloating. Even though pain did not decrease, I went to sleep before midnight and slept okay.

Nevertheless, I awoke this morning with continued cramping pain. However elimination relieved the pain somewhat. I didn't quite have diarrhea, but I had very soft stools, compared to my usual. That happened again after drinking some tea and apple juice a hour later.

I'm concerned and confused, because I have 2 different recommendations from my HMO about vancomycin. The instructions I received from the pharmacy say that 'belly pain' (which could be anywhere in the digestive system) is 'possible side effet', but 'call healthcare provider immediately' if you have 'severe diarrhea, even after medication is stopped'. Another set of instructions from my HMO's online info about vanco say 'stop using vanco and call your doc at once if you have ... severe stomach pain, diarrhea which is watery or bloody'. Well I had the first part for the past 12 hours, but I don't quite have watery diarrhea. Also I can't reach my naturopath over the weekend, when these emergencies often occur. I could call my HMO 24 hour nurse. However, I'd have to explain the whole history with flagyl, vanco, gut problems, probiotics, etc.

I DO NOT want to stop taking vanco. My initial c-diff symptoms included constipation, bloating and pain. I prefer diarrhea to constipation. Perhaps I reacted to too many tomatoes or the probiotic (which often causes gas and bloating) along with vanco induced diarrhea. At this point, I want to wait and see. I'm also going to listen to my body and eat what sounds good. Right now bread and nut butters with very little fruit sounds good. Maybe we'll have macaroni and cheese (low fiber) for dinner tonight. If the pain increases or I actually get diarrhea, I will call my HMOs 24 hour consulting nurse line. Meanwhile I'll just keep taking vanco and see what happens.

Thursday, August 6, 2009

I Love Vancomycin

After only one day on vancomycin, my c-diff symptoms all but disappeared. I had normal regularity, almost no dizziness or nausea, but I still felt tired. I also experienced some cramping gut pain late yesterday afternoon. However, that disappeared by evening. The flagyl induced metallic taste lingers. Nevertheless, I have much less c-diff and flagyl related symptoms.

The most challenging part of vanco is scheduling 4 meals a day, because I need to eat enough fats, protein and fiber to prevent stomach irriation from vanco. Eating those balanced meals means I don't get hungry as quickly. I can eat every 4-5 hours, if I don't overeat at my meals. I also quickly learned (from burning stomach sensations) that I need to eat more than ice cream before I take vanco. Last night I had a slice of fresh baked zucchini bread with butter and some hazelnut milk before I took my bedtime dose of vanco. I STILL got a little dizziness and nausea just before I went to bed, but felt okay in bed and much better this morning.

So I know I need to eat enough to prevent the vanco from causing stomach irritation. That explains why some patients complain of stomach pain or nausea and others don't. Those side effects all depend on what you eat when you take vanco. Of course eating enough to prevent side effects means I won't be hungry for at least 4 hours, maybe 5. So I'm back to trying to squeeze in 4 doses of vanco and still be hungry for meals. (I don't feel good if I eat when I'm not hungry and can easily get reflux if I eat when I'm not hungry or even overeat.)

I also fear that I'll gain even more weight while on vanco, because I have to eat 4 meals, rather than my usual 3 meals plus snacks. However, not feeling nauseas and dizzy all the time, makes me less motivated to eat outside my 4 meals. Knowing I HAVE to eat in another 4-5 hours makes me want to eat just enough to protect my stomach. Nevertheless, I'm staying OFF the scale until after I finish the vanco. More important than weight or appearance to me is my health. Having a potentially fatal bacterial infection gives me a different perspective on my body's health and well-being. So I focus more on how I feel and how my body functions, rather than how it appears.

This morning I tried on several very fitted dresses to decide what to wear to the musical ("Catch Me If You Can") tonight. Amazingly all of those (which I bought when I weighed a few pounds less) fit fantastic!!! Despite my larger (more toned?) biking butt, my stomach is much flatter without the c-diff bloat. I used to have just the opposite problem, bloated tummy and flat buns. I enjoy looking normal now. I'm also trying to tone up my upper arms, by lifting weights and doing special arm strengthening exercises. Slowly but surely, I'm losing my 'bat wings'. LOL

My experience with vanco makes me hopeful that I'll finally eradicate c-diff from my intestines. However, I've been disappointed too many times before to get really optimistic. Nevertheless, I'll just keep eating my four meals and taking my vanco, while I enjoy normal regularity and a flat stomach.

Wednesday, August 5, 2009

Weight Gain During Nausea?

Most people with c-diff, especially those who took flagyl for c-diff, LOSE weight. The nausea makes them not want to eat. The awful metallic taste of flagy permeates everything they eat. Their stomachs hurt after taking flagyl. They throw up from flagyl-induced nausea. I also experienced all those symptoms, although I only threw up once during the middle of the first night 6 hours after I took flagyl. I'm so adamant about NOT throwing up, because I want to overecome a longterm binge/purge habit. Of course, throwing up from illness nausea totally differs from choosing to throw up after overeating. I also didn't want to throw up flagyl pills, which tasted horrid going down, because they would taste worse when coming up.

So HOW did I manage to GAIN 3 (maybe 4) pounds during my 17 days of flagyl and several months (4 now?) of fighting c-diff? First of all, I realized this morning that I usually equate dizziness and light-headed sensations with low blood sugar. Since took a 2 day break from flagyl (or any treatment) for c-diff, symptoms of that bacterial infection returned. I felt very spacey, dizzy, cold, achey, even like I had the flu or maybe a bacterial infection. LOL So after 2 days off flagyl I became convinced that I STILL needed to treat C-diff. However I reacted to that dizzy, light-headed sensation by eating to raise my blood sugar, because I didn't realize c-diff, not low blood sugar, caused the dizziness. So I 'fed' the dizziness.

I also read comments from many flagyl users and medical info sites that eating many small meals or snacks would help decrease nausea. Even though the thought of eating was disgusting, when I was nauseas, I soon learned that I did feel better after eating, even when I had to take flagyl with meals. However I relished snacks when I could enjoy food without adding more flagyl. So I 'fed' the nausea.

Despite the awful metallic taste of flagyl, which permeated my system and changed the taste of everything I ate, I found foods that still appealed to me and tasted okay, despite flagyl. I loved high fat foods like ground lamb patties, ham and cheese sandwiches with dairy/soy free butter spread (same calories as butter), french fries (bland and oily), and coconut milk ice cream. Bland foods didn't taste as metallic. Almost any meat or vegie (which are basically bitter tasting) did not taste metallic. High fat foods, except peanut butter, didn't taste metallic. So my husband cheered when I craved and prepared his favorite foods like fatty meats, french fries, hot dogs with cheese, and anything with that butter spread (which he sometimes eats with a spoon from the container). I never 'graduated' to baked potatoes with butter (another of my husband's favorites), but I really got hooked on french fries (actually oven fries with lots of olive oil and salt). I 'covered' the metallic taste from flagyl with high fat, high calorie foods. That changed my normal diet from balanced low/high fat, low/high glycemic, low/high carb to high fats, carbs and glycemic foods. I suspected I might gain a few pounds but I felt too awful to care.

Finally I fed my discomfort, frustration and misery with food. I never binged. I never purged. However I ate snacks (usually fruit or nips of peanut butter) when I was not hungry. When I ate meals I seldom stopped when I felt full. Previously I stopped when I felt satisfied and full. However the metallic taste kept me from really feeling satisfied by anything but bland, high fat foods. I even overate those, because they tasted so good. Basically I stopped caring about hunger/fullness eating. I just ate to cope with physical discomfort from nausea, metallic taste, fatigue, etc. Most importantly, I ate to cope with emotional frustration, hopelessness and fear that I would never recover from c-diff.

How long did I feed my feelings and my discomfort? Amazingly, about as long as I have abstained from bingeing and purging ... or almost 5 months. My c-diff symptoms were troubling in April, but I didn't get a stool test till mid May. After my doc previously discounted my cryptosporidium symptoms as 'stress', I doubted my still undiagnosed c-diff symptoms. Then I had to wait 3 weeks (almost 4) for the test results, which arrived when my doc was out of town. By the time my doc saw my test results, he called in my prescription, and I started flagyl, another month passed. I spent another 10 days taking flagyl while suffering those horrid side effects. Then I spent a week taking high dose probiotics to replace good bacteria which flagyl killed. Then I felt good for about a week, before the c-diff symptoms slowly returned, first irregularity, then bloating and finally cramping pain after every meal.

After I emailed my doc about my recurrent symptoms, he again prescribed flagyl, which I began immediately. However, the 2nd round did not immediately alleviate the c-diff symptoms. So I had c-diff cramping intestinal pain, bloating, and irregularity along with flagyl induced nausea, metallic taste, stomach pain. I could have endured the flagyl discomfort if I would have noticed some improvement in the c-diff symptoms, but those got worse until nausea from both c-diff and flagyl made me call my doc and ask for vanco a few days ago. I only took 7 days of the second round of flagyl, for a total of 17 days of flagyl treatment.

I'm not surprised that I didn't gain more weight from comfort eating over 4 months ... a pound a month seems pretty reasonable. LOL However, I did refrain from bingeing and purging, despite all that I experienced. I had committed to abstain from b/p no matter what happened. So that commitment carried me through flagyl induced nausea.

So now I'm on the vanco. Timing and taking the pills is the most difficult part. I have to take them with a high fat meal and full glass of water. Then I need to evenly space out each of 4 pills daily. I can do 3 with meals, but getting the fourth before I go to bed may require staying up a little later and suffering through some high fat ice cream or peanut butter on crackers bedtime snack. LOL Side effects from vanco so far? ZIPPO!!!

I had nausea and bloating from c-diff before I started vanco. So I don't think I experienced any vanco induced nausea. I actually felt better as time passed after taking the vanco. Maybe it's finally killing all those c-diff spores. I still get gut cramps after eating, one of my c-diff symptoms, but those cramps disappear after a few hours ... yeah, just before I get hungry and have to eat another meal. However, I suspect as the vanco eliminates the c-diff I will have less and less gut pain, irregularity, bloating and nausea. I don't know how long the metallic taste from the flagyl will hang around. Last time I quit flagyl I tasted bitter metal for a week after I quit.

Only time will tell, but I already feel more optimistic about vancomycin. I wish I had insisted on vanco the first time, but those scare stories about horrible, irreversible side effects scared me. I suspect those occurred in patients who were already hospitalized with underlying conditions, rather than basically healthy people like me.

Tuesday, August 4, 2009

2 Day Break from Treatment

Per my doc's suggestion I'm taking a 2 day break from treating C-diff. So I'll start the vancomycin tomorrow morning with breakfast. I still have nausea and horrid metallic taste from flagyl. I still have cramping pain, urgency and passing mucous from c-diff. So I know I need to take the vanco to eliminate the c-diff bacteria, but I wanted to let the flagyl induced-nausea decrease a bit, before beginning vanco, which may also cause nausea and dizziness.

The pharmacist also recommended I take vanco with food to protect my stomach. Some people get stomach irritation from Vanco. Since I already have CD and food allergy 'stomach' problems, I will take vanco with my 3 meals and a bedtime snack. I'm supposed to evenly space vanco intake. When I asked the pharmacist exactly what kind of food was best, she said 'fats'. I get fats with most meals, but usually snack on fruit, although I rarely snack before bed. So I plan to eat earlier meals so that I can be hungry for a bedtime snack. I don't want to eat something that will disturb my sleep, so I'll have ice cream. I can't think of a better high fat food, but easily digested food, than my coconut milk based, allergy free ice cream. I LOVE having an excuse to eat ice cream EVERY DAY. LOL

I've asked several friends to pray for my recovery from this c-diff bacteria. If you're reading this blog, but I have not personally requested prayer, please pray for me. I really want to eliminate this dangerous bacteria with this round of vancomycin treatment. I have no other choices besides flagyl and vanco drug treatment, except surgery to remove intestinal tissue damaged by C-diff. I hope vancomycin will prevent that possibility.

Monday, August 3, 2009

From Flagyl to Vanco

I felt soooooo crappy this morning (chills in a 75 degree house, headache, nausea, cramping pain, bloating, awful metallic taste from flagyl) that I suspected flagyl did not control the c-diff. I planned to see how I felt after breakfast. However, in the middle of my bowl of cereal I didn't know whether I would throw up or pass out. So I stopped eating and called my doc's office to leave a message. Miraculously his assistant answered the phone. I explained my situation and was quickly connected to my doc.

We talked about my current symptoms and agreed that I should switch to vancomycin, but NOT before giving my body at least a day to recover from flagyl. Even though I took no flagyl today, 6 hours after that phone conversation, I still have the metallic taste, feel very bloated, had cramping pains while eating lunch, didn't feel well after lunch and seriously considered throwing up (since I had no flagyl to taste or lose) for the first time in 19 weeks. I thought I had just eaten too much lunch, because I didn't eat much breakfast and was starved and shaky. Nevertheless, I'm committed to keep down anything I eat and didn't throw up. If I got nothing else out of my flagyl experience, I hoped to change my belief about throwing up when I feel uncomfortably full.

The nausea has decreased now, but the reflux is beginning. I will leave to walk to my clinic pharmacy to get my vanco Rx. I'm not certain whether I want to start Vanco with possible nausea or dizziness side effects tomorrow or wait another day. If I really feel sick with c-diff like symptoms , I may risk more nausea and start the vanco. Time will tell ...

Sunday, August 2, 2009

Mayo Clinic Website

My latest good news, bad news is that I found a Mayo Clinic website which explains how I could have developed a c-diff infection. Most people get c-diff after being in hospitals (where that bacteria abounds) or after taking a strong antibiotic which kills off their good bacteria. Last summer I took an antiparasitic drug for cryptospordium and and an antifungal drug for candida. I only took the antiparasitic drug 3 days, but took the antifungal for a total of 5 months, but not continuously. The MC site says that prolonged antifungal drug use can also lead to c-diff infections. I'm definitely going to tell my doctor about that. He didn't think I needed high dose probiotics after taking the antifungal drug. I took them anyway.

The bad news is that the MC site said that most studies show that treating c-dff with vancomycin FIRST, often prevents recurrence of c-diff. However standard procedure is 2 rounds of flagyl, then prolonged vanco treatment. I STILL want to go to Maui on October 6. My orthodontist is trying to complete my invisiline work before then. I want to be WELL by October. So I hope 'prolonged' vanco treatment is less than a month. However, we can easily cancel our trip, for medical reasons, without financial loss.

Nevertheless, vanco should be easier to take in capsule form (no bad taste), even though I might get some nausea. I've read really good reports about vanco, as well as some dangerous, irreversible side effects. I just don't know how long to wait after I finish the flagyl to decide whether or not I still have c-diff. That's totally up to me. I hope my doctor finally learned his lesson after doubting me 2 years in a row when I had serious infections, which he disounted as 'stress'. He has been much more supportive lately.

I'm so glad I finally found an explanation about WHY I got c-diff. Understanding WHY these things happen gives me more hope that I can prevent recurrent infections from other bugs, once I eliminate c-diff. Nevertheless, I'm struggling to stay optimistic about eliminating this bacteria, before our planned Maui trip, if ever. So I asked for prayer support during the prayer request portion of my church service tonight.

I know God will use this experience to teach me some kind of lesson and strengthen me, but I have difficulty seeing the 'big picture' while I still suffer both nasty side effects of flagyl and ongoing c-diff symptoms. By the 4th day of my last round of flagyl, the c-diff symptoms had disappeared. I'm starting day 7 (of 10) of this flagyl treatment and still have c-diff symptoms.