I am scared to take antibiotics, don’t laugh?
It’s weird because antibiotics have worked so well for me in the past. There was the time I had a river water infection from a cut on my shin that got infected and antibiotics stopped the pain and the infection. There was the time I had a pedicure(my first and only, birthday present from old girlfriend since I had/have nasty feet) and got an infection in my toe, once again antibiotics stopped the infection.
There was a time I had blood drawn and a few days later the vein turned red from the needle point up my arm, another infection that antibiotics worked well for. And most definitely 5 or six other times where antibiotics worked well for me. Oh, how could I forget my battles with C difficile(C Diff) that only got better with some vancomyacin and Flagyl antibiotics? Yup, they have worked so well for me. Thanks antibiotics, you are great. But, I am still scared of you, you freak me out. No thank you for that.
So what’s up with antibiotics? According to some very smart people/scientists, antibiotics are medicine that kills off bacteria or at least stops bacteria from multiplying at high rates. That sounds really good right? It does to me.
living bacteria
But there’s probably more to the story. And now time for some rambling/speculating on antibiotics.
I have UC. I also have taken 10 plus rounds of antibiotics in my life. Is there any connection? I sure don’t know, but maybe some fellow UC people might be able to answer that, or some other really smart people. I recently had someone who I’ve met through this site say that one possible trigger of UC symptoms is from antibiotic use. Also, the use of antibiotics can sometimes cause people to develop the nasty C Diff. So, how do we find out if antibiotics can cause other side effects other than what they are intended to do? It’s almost a Catch-22. If you are stuggling with a nasty infection and all kinds of pain and you are prescribed some antibiotic (the Z-pack antibiotics for example), how many of us are going to say this: “Hey doctor, I realize that I might lose my leg if I don’t take these things, but what side effects are possible later in life from popping these pills?” I surely wouldn’t have thought to say that. What do you do, keep going a few more days in nasty pain to see if your body can fight off infection without antibiotics, and only go to them as a last resort? Tough tough decision. Nasty tough decision.
About three weeks ago my wife came down with a nasty sore throat. I was lucky not to get it at the same time as her. After about 10 days she went to the doctor who prescribed Zithromax antibiotics for her. Within 3 days she was feeling much better, and after 5 days was done with the medication and better again. BUT, right afterwards, I started getting the sore throat, and I started wondering some things. “Oh crap Adam, are you going to have to pop the antibiotics just to get rid of this too? Are you going to catch the nasty C Diff like you had before which caused you to bleed bright red blood like a firehose? Were antibiotics the reason you developed UC in the first place…????”
So there I was, a not too bad sore throat, and watching the days go by. Had it been a horrible sore throat like I used to get when I was younger, I’m not sure how things would have unfolded. But, this one wasn’t a show stopper, so I just toughed it out(with a side of complaining to my wife quite a bit… sorry about that wife). That’s right, I was scared of the antibiotics, I even told her that when she said for me to stop complaining and just go to the doctor. I also didn’t want to break my streak of no doctor’s visits this year so far.
In the end, yesterday, the sore throat went away, no drugs, just tons of tea and honey.
But, I’m still scared of antibiotics.
I’m not scared if you share this, my friends know I’m a big wuss
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
I think you are on to something as it pertains to the antibiotics. I suggest you try “oil of oregano” in it purest form. Don’t buy the diluted stuff get the best you can put your hands on. Not cheap ($35) small bottle but works great for bee bites to sore throats, check it out on the Web.
I’ve had UC for 46 years and used to control it with colonoscopies. Every two to three years I would start to have problems and that was when I knew it was time. I’ve had poloyps for years. The last five to six though have been straight downhill. The last scope I had was at the Mayo clinic where they stopped it due to the inflamation. I had stopped the medicine because I didn’t think it was helping. A new gastro finally did a celiac test and I am very positive. Diet doesn’t seem to be helping much. I would love to try antibiotics. The last time I was on one, for an infection in my finger, it helped with the colitis! I just can’t find a doctor who will try this with me. Do you have any suggestions? I live in very cold Northern NY.
Hey There Chris,
That’s a tough situation you are in. I think its probably going to be hard to get antibiotics prescribed if the doctors are not willing to try it with you. I guess my main suggestion to pretty much everyone is to give diet a real hard effort if you are at a last resort situation. That is where I was at when i tried the SCD diet and it has been great for me. Of course, you may have already tried this diet, that I am not sure..?
Did the doctors talk to you at all at Mayo about the celiac situation? Or did they give you any advice on how to go about treating that?
I am also afraid of antibiotics. I avoid them. I weigh the pros and cons and try to push through the illness. But I’m on 6mp and am still learning how that can affect each illness. Maybe it doesn’t at all. But I don’t want to end up on the hospital with pneumonia bcs of my fear of antibiotics. So far I’ve only caved once since on 6mp and that was just 2 weeks ago when a sinus infection became unbearable. I remember being so much tougher when I was younger…ha! Anyway, now when I get sick the mental battle is sometimes just as challenging as the germ that has settled in me.
Hey Adam and all…scared of antibiotics…
Gotta da double ear infection a few weeks ago…didn’t even know what it was since I’ve never had one and haven’t even been swimming in the lake yet…had pain, dizziness and felt like a boat…the boat is in the shop being fixed so not that either! Anyway, pain got bad on a Friday night/weekend, of course…appt. on Monday double ear…we agree no antibiotics a try…still having issues, pain in my jaw, got wisdom teeth thing going on yes I still have those and had another consult and he wants to take all 4! That’s anther issue and yes, I’m 45! OK anyway, after almost 3 weeks it has spread to sinus infection…we discuss all antibiotics and he explained why amoxicillin is the best choice for me with uc..kills off less of the good bacteria..gram negative/stays above digestive mostly…if lucky and he asked me to “please take it”!
Just out of a long hard flare,no meds, upping vsl 3 DS, don’t want it to spread more, headaches, on a boat feeling, never been on amoxicillin before, only taken antibiotics 2 other times in my life…for real! And for those that don’t know UC for a lifetime!
Any thoughts or suggestions? Adam, thought i’d bring up this old relevant, said my thoughts-post.
Thanks, Shelly
sorry for tablet typos! Help…did I say scared…may be closer to petrified! :-)
Here is the post!! I found it Shelly!! I’m so proud of myself…
My thoughts on whether or not you should take antibiotics…I think sometimes you just have to. I never want to either, but you just keep taking your probiotics at least 2 hours apart from each other, and you should be fine. I took them twice a few months ago for a UTI…HAD TO…if you know what I mean…doc said there was no other way to get rid…those UTIs are so painful and get worse and worse if not ‘treated’ with antibiotics. Anyway, I just took my probiotic, as usual, and I made out fine!
Of course, you always MUST tell the doc of the UC condition, thus, like yours, they will treat you with the antibiotic least likely to offend it!!
Don’t be scared…or petrified…I do understand those feelings, though…just out of a damn flare and all…stupid infections that just seemingly come out of nowhere!
:)
You did it! sorry about my delay…thunder storms with one of my dogs who goes crazy scared..almost had to medicate!
Thanks for the extra info. My Dr. Is so cool and explains everything thoroughly. He is actually the one that started me on probiotics to begin with…he’s the D.O. He explained why amoxicillin is the best one.
I’m nervous to be allergic and/or end up in another flare. I surely don’t want it to spread more and cause anything worse.
I appreciate and value your thoughts.
Thanks…thinking about building up with the vsl and starting the amoxicillin on Monday and just in case…not a weekend.
Thanks, Shelly
Oh Shelly…I had a lovely dog just like that! Thunder almost killed her every time. It was so sad for her…she’s gone now, but not from the thunder. Just old age.
I know how you feel about taking the dreaded antibiotics…I swore I would never take them again, about a year ago, and I have actually HAD to take them three times since…with NO ill effects! I know! I can’t believe it either, but I guess the doc was giving me UC ‘appropriate’ antibiotics, plus I was taking probiotics for the first time while on them as well.
I just know that you will be alright Shelly. I just know it.
Bev..thanks.
In addition to thunderstorms we now have legal fireworks! We have a neighbor that sets a cannon off ALL day on our July 4, with no prdictability, so it is now the worst day of the year! Unfortunately/fortunately, my other dog’s hearing is going so he doesn’t hear the noises as much. But it is sooo heartbreaking and unhealthy and she has colitis, too! They both got really sick a couple of years ago drinking from the lake…no more lake swimming! Pumping full of meds..I was so scared, bloody d, throwing up blood…they both are very special, but she is sooo loving and sensitive and a bully. Anyway, started her on similar path as myself, chx and rice and probiotics. Finally! Recently put flea meds on and wham…back to flare and been on same diet for a couple of months..fingers crossed as always. She is not officially diagnosed, but clear symptoms.
Anyway, I always feel like I am on the verge with my UC, plus TONS of stress-my soon to be officially legal spouse/best friend/soulmate, 26+yrs., has had MS symtoms for almost 2 years, no diagnosis, missed tons of work last year, ms symptoms plus seizure like symptoms, so sometimes left unable to do things-spasms, tremors, spasticity, speech problems, cognitive issues,pain, fatigue, not driving, inability to be in heat…and boy has it been nasty…thank goodness for air cond….so extra consequences/pressure to stay well. She is only 46 and teaches and right now could not go back to work..getting more MRI’s and another Dr. who specializes in MS…so we are keeping our fingers crossed. The other uneasy thing is that this disease modifying drugs overlap into many of ours! Extra scary stress!
Thanks for the vote of confidence and your positive thoughts. Guess I needed to put it all out there! Not to mention 2 neurotic terriers who I love to the nth degree! :-)
Thanks again, Shelly. :-)
Fireworks too? That’s about as bad as it gets for some dogs (and probably cats and whatever other small animals are present at the time), Shelly. We could have never taken our dog near fireworks. I think she would have had a heart attack…
I so feel for your partner as well…it seems like some sort of ‘epidemic’ inflammation-wise…you are in Maine, correct? You sometimes have to wonder about the town or city in which you live…just how ‘safe’ is the environment for ‘living’ things? I’m getting too deep now…there are a lot of things on this earth that we do not know about, that we are not told about. I suppose if we knew everything, we would be scared shitless?!
I know that I was (and still am a bit) fearful when I feel like I have any sort of ‘infection’ and I may need to take antibiotics…BUT, having said that, after taking them three times this past year, and having NO repercussions from them, I am less afraid these days, if that helps at all. You just have to work a little harder at spacing out the antis and the pros…biotics that is!
Happy vibes
:)
Ignorance is bliss sometimes! :-)
hi Bev, and Adam and Joanna,
So after continuing to freak out and panic about returning to a UC flare…I just pretty much got out of an 8 month-er..no meds…going on 2years!! I went back to my chiro and he put me back on an antibacterial herb….so I will try that first with the Rx filled as backup. Just don’t want infection to spread. But also don’t want another UC flare!
Thanks all! Shelly
I hear that Shelly!
Two years on no meds is freaking stellar!! Gotta keep that going for sure.
Tell us if those herbs do the job.
Bev
:)
Will do…was just getting ready to repost another story, too! So, fingers and toes crossed, because I can feel my system confused on what it is fighting! Plus the stress…bad UC combo!
Thanks, Shelly. Nothing but positive and well thoughts and wishing and willing to return to healthiness…I think I can!
Hey Shelly,
Wowie, darn antibios…
Sometimes can’t live with em, can’t live without em.
I had a run-in this week on this exact topic, and told the doc my concerns with them. he was going to write a prescription for them for a stragne bit of bumps and redness on my ankle that sprung up in about two days. Told him let’s hold back and we agreed on a steroid cream to try first. Long story short, its been two days, and it seems to be resolving on its own. So good news, but more than that, I don’t know how long I’d go if things got worse with the infections signs (redness and soreness to touch etc…) It’s such a fine line on how long do you give your natural immune system to fight something off before going the non-natural route…
I thinks its a personal decicion, no one persons the same with that answer either. It’s a super tuffie, and one which goes on the long list of hard decisions we UC’ers have to face.
I wish you the best Shelly,
Adam
Thanks…saw your post on Facebook…think we went to the Dr. The same day…spooky!
So from one scaredy-cat to another…good luck back at ya! :-)
What about trying oregano oil? I hear that can be good for sinuses.
Antibiotics scare me too. Ive been on them three times since february for c diff. My gut is still messed up from the vanco but at least the C. Diff is gone. Ive been taking vsl, kefir/yogurt, and saurkraut out the wazoo but no results so far. Its so frustrating!
I hope you feel better though. Ive taken amoxicillin in the past before i had UC so i cant remember if it did anything to my gut. I mean, i developed UC so im sure it didnt help!
Joanna,
Thanks for your thoughts…I thought you’d have some great advice! Unfortunately, I think I went past the point of herbs. I also have the teetering UC, wisdom teeth and stress, as I just wrote to Bev. I know, heaven forbid, that infections in these areas can be potentially worse. I probably have gone about 5 weeks total waiting this out. I can’t afford to get sick on any level right now. I basically have resolved to crank up my vsl3 DS and start on Monday…just in case, don’t want it to be a weekend!
It sounds like you have been doing pretty well from your posts…healthy thoughts!! :-)
Thanks, Shelly
yeah, definitely overload your body with probiotics!! not much else you can do if you are really feeling miserable.
if you haven’t tried kefir, get some of that. it has a lot more strains of bacteria than VSL does and it is super easy to make.
you should also consider sodium butyrate. not sure if you have read about it, but it’s a fatty acid in your colon that heals your colon’s epithelial cells. I take it in capsules. I just figured i’d mention it since antibiotics will probably be rough on your gut and the butyrate might help it repair itself quicker.
Hi Shelley!
Just reading this thread and wanted to say you’re in my thoughts. I hope the herbs clear up the infection, but if you do need to take antibiotics, know that you’ve got an arsenal of probiotics and other support to deal with any wonkiness that may occur–and a solid foundation of some consistent healing and good living behind you. Stress plays such a big part in UC as well, so do everything you can to not get too worked up over all of this. I bet Bev’s success with the antibiotics is also partly due to her terrific attitude about being in control of her health. Just put on your Bev hat this week if you’re finding your own perspective teetering at all. We’ve all been there, for sure.
I’m really sorry to hear about everything your partner is dealing with as well, and wish you both the best. I have two friends who were diagnosed with MS at young ages and both were able to get into remission with diet. I know one used the Candida Cure. It’s all about addressing bacteria issues too!
Autoimmune, inflammation, bacteria, oh my. Or should that be argh! Take care and thanks again for all the smoothie tips last month!
hi Colleen…so glad you saw this and added your thoughts, too. Love the “Bev hat”! :-) Needed a laugh! And thanks for your word of encouragement. I’m just not sure…wish I had tried the herbs sooner. I think my chiro thought that I may have already been on antibiotics..he wasn’t sure why we hadn’t addressed it when I was in with the double ear infections.
Thanks for the tips about MS, too. It is scary to think they can’t diagnose anything. She finally got the MRI’s for Thursday, with and w/out contrast dye. She has had 2 lumbar punctures, blood tests, mri’s and been admitted for video telometry in hospital for a week-seizures not epileptic in nature. Good nothing has really shown in some respects, but our fear is that it is beyond where most mri’s can reach. It seems there is often a difference in when you are diagnosed as to how the symptoms go and treatment. No diagnosis, no real treatment..catch 22!
Thanks for the info and any other thoughts are welcomed and appreciated! You’re welcome on the smoothie tips…going back to those myself and treading carefully back closer to SCD!
Thanks and best, Shelly
Colleen, you just may have something there. I was afraid of those dreaded antibiotics too, but you are right, I have sort of a different, more relaxed attitude, like, there is no way they are going to cause a flare because I am taking probiotics now! I wasn’t even worried the last time, when I had a UTI and I had to take them. Just plug away, take the whole prescription, day after day, and take the probiotics four hours away from the antis…
Yep, I think you are correct! I’ve psyched myself into calm-dom over things like this, these days! We can control our own health…and psyche, for sure!
:)
This would be so much easier if I had “normal” symptoms. I basically have no fever, no colored mucous, not stuffy or congested. I can feel it in my ears, sinus, jaw, mopinor headache. And if i wasn’t worried about a more serious infection to brain, heart, ick, heaven forbid! This would be a lot easier, too. And having someone who I used to rely on having to rely 100% on me adds a completely higher level of stress.
Dang, gotta check around for my Bev hat…probably go hit the treadmill…that’s my Bev hat helper! :-)
“Minor” headache…auto-correct what? I mean really!
You guys are so funny!
Bev hat….lol
:)
Hi Adam, Shelly, Sharon,Bev, Colleen and Joanna! :) Just got back from three days away and a week off from work, so I just saw these posts and wanted to chime in :) Shelly, I’m sorry to hear about your soul mate and soon to be spouse (Congrats by the way!). I’m sorry you’ve been through so much trying to get an accurate diagnosis and treatment plan together. That is a lot of stress. I feel for you both. I know there’s a lot of help out there once you can narrow it down, so I’ll be thinking of you and praying for you for the best. I know, too, that diet can help, stress reduction (of course-but who isn’t stressed when they hear they have a “diagnosis”), trying to stay in touch with friends and supportive people who can just “be” when symptoms come up. We all need those friends, don’t we? The ones who, no matter what your symptoms are, how long they last or how good or bad they get, those friends are there for you. It’s rare to find, but they’re out there. So I wish you both the best.
Talking about the antibiotics – a few things. It’s a complicated field. Like I’ve said before, when I first studied nursing and microbiology – the schooling being almost 30 years ago now because I went for my bachelors in science – I had an immediate fascination and respect for the world of microbes…almost went into microbiology or epidemiology it was so amazing. Seeing and working with those critters under a microscope in a lab and then seeing their effect and treatment was like seeing the world in a whole different way! They are to be respected :) So are antibiotics and naturals because they act like antibiotics in your system. The big thing I’ve seen over the years is not necessarily a disregard in the medical nursing community for herbals and naturals, but a “fear” of the potential for side effects or ill effects from them. Same thing with antibiotics, but because they are more “controlled” (i.e. FDA regulated) people seem to have less fear of them when prescribing them.
I have developed fear (in a good way) of BOTH. Sometimes when people OVER — USE the naturals, or are not sensitive to gradually increasing their use and seeing what their body does with it, they create the SAME situation they tried to avoid by not taking prescribed antibiotics. You know how probiotics and naturals alter the bacterial environment in your gut? Well, that’s to be respected. Some times too much is too much – you will see a shift in gut bacteria from overuse of probiotics similar to what you see with the overuse of antibiotics. It follows that you can then start seeing “resistant” strains of bacterial gut flora from overuse of naturals that can become hard to treat if they get out of control. Just like antibiotics. For those of us who are afraid to take prescribed antibiotics – me included – I would really say you have to think of the pros vs the cons and what outweighs the other – risk vs benefit. Everyone is different in their reactions to antibiotics and naturals. But we have to be careful – there are some infections that need the prescribed antibiotics, like the woman on site here who’s leg hardware was infected – you do NOT want naturals for something like that. You would need them in such large amoutn to even begin to simulate prescribed antibiotics that it would be too costly, and for certain infections there is no question that the cost benefit ratio is a given. Infections in hardware cause people to lose their legs. That being said, I would very much supplement with probiotics. I would also note that C Dif is usually seen in people who have been hospitalized (within the first week home usually) or who have been on antibiotics for extended periods of time. This can be counteracted with probiotics, naturals, diet, rest, fluids, the basics.
I personally have been on multiple antibiotics like everyone else here, and have had some increased GI symptoms as a result, like cramping, frequent stool, sometimes diarrhea. These include: flagyl, cipro, z packs, etcover the years. But I’m almost 50 yrs old :) , so you get more exposure to these as you get older sometimes. They shouldn’t CA– USE C-DIF, unless you are already compromised which puts you more at risk for C Dif anyway. Keep doing the little steps you need to be healthy, like Adam said in a recent post about the possibility of taking too many supplements. Good advice – and if an infection rises, yeah, sometimes waiting to take an antibiotic is a good thing (we know our guts better than anyone) but sometimes the risk of NOT taking them will outweigh he benefits – I recently had a friend hospitalized after taking naturals for what she thought was a UTI because she didn’t want to take antibiotics, went to the Critical Care unit with UTI, Kidney infections and Kidney Failure as a result – so BE CAREFUL when weighing risk vs. benefit and tell your doc what you’re already taking and your fears – if the doc is worth their salt, they’ll listena nd work with you. And if you have a relationship with them that’s kind of “back and forth” you can work things out and listen and learn too :)
Hi Hope…thanks for writing…I actually posted to you on your story to write here..not sure if you even saw that?!
I was hoping(haha) that you would be able to give that medical background piece…boy was I right..even better, it is one of your interests. Did you see Adam’s recent story post…Outstanding overview of gut bacteria…”?
Anyway, I get all that stuff, but emotionally and knowing I just go out of an 8 month flare, plus everything else going on and her not always being able right now puts the extra consequences of making a wrong decision all that much more critical. I had even resigned that after having gone through all the meds, etc after a lifetime with this, I was OK with surgery, but now I can’t without her being healthy. It’s extra crazy stress.
I do worry as much about spreading infection and am trying to keep an eye on every little weird symptom I have without driving myself insane! :-)
I do respect herbs and naturals and also try and remind others that they do interact and have side effects, too.
So i am trying the natural herb until Monday and see how that goes? I actually feel a little better, but felt OK before except for a couple of days.
Any other thoughts are truly appreciated.
Thanks, Shelly
Hi Shelly,
I hope I didn’t come off sounding thoughtless on the antibiotics thing! :) You’re right. It is a passion of mine – the sciences, microbes, all that good stuff. I have had a fascination with that since nursing school, and I really had a hard time deciding between nursing and microbiology as a career! But I never want to sound overboard with all that. I love the comments and thoughts of everybody here. I’ve had a lot of background and experience, but it’s funny how denial works too. I could talk about it, read about it, theorize and see it in practice, but I myself didn’t take it seriously for ME until I was in this 2 year flare, and then instead of just dabbling here and there with some acidophilus or activia or some other yogurt, I decided one day to take it seriously for myself. Isn’t that crazy??? We can all preach, right? But when it comes to applying it to ourselves, we sometimes have a hard time. I did see the posts by Adam, and the most recent one, on gut flora and it was great. There was another connected response there in the thread about research with microbial flora in Maryland, I think, so it’s becoming much more recognized in general out there. I wanted to encourage you – I know you’ve been through a lot and are going through a lot right now with your best friend/soul mate. As much as you want to decrease the stress because of your own gut issues, I know the stress of having someone you love go through all the tests she is going through…it’s a tough thing. I like to go outside and look at the sky and “see how big God is”, turn on music, cry, write/journal, and try not to get isolated when the stress is so high that I just feel like I can’t do anything — especially when my gut is flaring, or on the verge. There’s nothing like that feeling of “feeling” a flare is coming. It’s so discouraging! Another thing I am finding is helping me is to make a conscious recognition of where the pain or other symptoms are – I used to, once I felt rectal pain for example, immediately go to the next thought “My whole gut’s gonna hurt” or “Oh no, I’m headed for another 8 month flare…once this starts I’m in trouble”. So lately, I’ve been learning to stop and say “I have rectal pain right now”. That’s it. If I get abdominal pain, then I can say “I have abdominal pain right now and rectal pain” but I try not to go to the next step. Sometimes the abdominal pain goes away and it localizes rectally, sometimes the whole thing goes away in an hour, sometimes it stays. But it is helping me to say “For now…”I know how it is to notice every symptom and feel like you’re keeping such a close eye on things that it really feels like you’re losing it! :( Testing is scary and I know you’re worried about your honey. One step at a time. I’ve been there too, with my kids or husband. I know it’s not easy. I thought Colleen’s response was good, too, to remind you that you have success for your UC behind you, you have probiotic and natural/diet support and keep it steady. So if you feel you need antibiotics, you have that to go along with it. Hang in there, and keep us posted. I’ll b thinking of you and praying for you in your situation right now. All the best – Hope
Hope,
I thought you covered it all well. I really appreciate your knowledge. I do understand the whole ridiculous cost/benefit risks etc. If my body reacted normally to things I probably would be less stressed. I love the science behind everything and almost became a nutritiinist, but the science was a wee bet too much for me so i studied psychology instead…my real love! And now I work with special ed. kids!
I appreciate yur de-stressing thoughts as well. I am quite spiritual as we discussed on the other thread…I live on a lake and every day is a gift for us with our 2 dogs…it is amazing and we thank our lucky stars every day even if we haven’t been able to go out and enjoy it…she can’t be in the heat or her brain just has a melt down!
My journey with UC is long one…I wrote my last story a year ago after being a year off humira…a Med that forever changed my body’s ability to regulate well and whatever else. I already have weird things happen as my Dr. Calls me a 1% of when things can go awry! Anyway, I digress! I will be fine because I HAVE to!
Thank you Hope for all your wisdom and kind thoughts. :-) Shelly
Hi Shelly – Yeah, I’m one of those 1%ers too! Now that would be a good study – to see how many other people out there with UC are the “1%” who always get the 1% of the rarest side effects of any drug! It’s tough sometimes! And I’m finding I am much more wary of taking prescriptions. I also am very careful of Farmaceuticals because they also have their cost/benefit risks. Unfortunately they aren’t covered by insurance, either, so it’s tricky. But I’d much rather go with the natural Farmaceuticals than the pharmaceuticals if I can. Still, both have advantages for treatment, and both have potential side effects. I’m sorry to hear about the humira. I haven’t been on that, but I know it’s another one of the higher end treatments and it’s surprising how much it can effect you in other ways. I found myself a totally different person on prednisone which is pretty commonly prescribed, and coming off of it mentally was harder than physically! I can imagine your soul mate can’t be out in the heat without having issues – the heat is just another stressor for us sometimes. I hope you have some days where you can enjoy a little more of the lake and the dogs and getting some time just to connect, some relief from it all. Again, thinking of you, and hoping for the best. This road is not the easiest to walk sometimes. I appreciate all your insight and wisdom, and wow! Psychology! You have a lot of interests and talents and so much to give – hang in there! – Hope
Shelly, just want to check in and see how you’re going. Great advice from Hope above. Did the naturals take care of it or have you decided to try the antibiotics? And how are you feel anxiety level wise? Hope all is a little better on the home front. Do check out the book the Candida Cure for your soon-to-be wife when you can. Even if she doesn’t have a diagnosis, a healing approach via diet won’t hurt, right. If anyone does, we know the power of a diet change! Although I imagine if she lives with you, she probably eats pretty well to begin with. My whole household is nearly on SCD by default. I’m the cook, so that’s how it rolls over here. Best.
Hi Collen and all…
Thanks for checking in. Nothing to report yet. I’m supposed to take the herb for 10 days which is coming up tomorrow. I have had less effects from the infections, etc, but some more blood mult trips and some urgency, but keeping as relaxed as possible….Really! :-)
We haven’t tackled the whole candida thing yet, but did the spit test-ick! And it seemed to look AK, but I’ll keep reading up. The MRI’s didn’t really show anything new which in most ways is good news. Still waiting for appt. to new neurologist. So status quo. Did get out n the almost fixed boat for a couple of hours. May get it back today!
Perfect Maine summer day today.
Thanks again for all the support and advice. All is welcome.
Best and hope everyone is well. Shelly
Colleen!! :-)
And that was OK although AK is kind of appropriate! And on…not n!!
Seriously deficient self correct!
Hi Shelly,
Thanks for the update. Sorry to hear about the blood and urgency though! I had a bit of a off few weeks in June when I ran out of my VSL packets and for some reason the capsules weren’t doing the trick (even in the same dosage amount). It reminded me how precarious this healing process really is. Then once I was back on the packets, but not quite totally back to where I was before I had run out, I drank a glass of wine and started seeing blood the very next day. And then what usually would have taken only a few days to right itself took weeks instead. (I always see blood after wine. I almost never drink it anymore but was out with the girls and it’s just nice to feel like one of the pack sometimes…) Anyway, my point is (sorry to go on about myself) that I wobbled, but was able to get it back together before things got out of control. You might just need to lay off a few more advanced foods for a while, and double or triple dose the VSL, etc. I’m sure you’re doing this all already. And I know you know all of this. But I also know the anxiety that comes with seeing even a slight increase in symptoms. It can be pretty disheartening. Just buckle down and make tending to the UC a priority instead of a routine for the interim until this infection is gone. You’ve figured out what works for you, and there’s no reason to doubt it; it might just be a matter of tightening the reigns for a short while.
Not sure if this is making sense. The boat sounds grand. Nothing like some soulful healing out in nature. Do the doggies come too? I meant to tell you that I gave my pup probiotics too. She’s got a wonky tummy, just like her mama, and is prone to bacteria problems. Anyway, best to you. Summer in Maine! Nice…
Hi Colleen,
Thanks for all the reminders. I did increase my vsl, but am being cautious and slow and giving my body a chance to adjust a bit. I was thinking about what Hope said and reminded our bodies can maybe have too much or reject somewhat even probiotics.
I really am not panicking yet. Trying to stay focused n the ear/sinus thing. I can’t really tell what exactly is going on in there! It still feels like fluid, but I never felt horrible before except a couple of times.
Yeah, we havent’ had our boat all summer, it’s been broken and we just got it back again for the second time…keeping our fingers crossed! Same with our Sea doo as well…oh well, that is back in the shop now and only used a couple of times! :-) Oh, no digs on the boat…1 gets a little car/boat sick and the other just wants to jump in and drink from the giant never ending water bowl! :-) plus they both got extremely sick a few years back from swimming and they try and drink so never again. And they are never off leash, but do have very cute life jackets with handles to be able to reel them in and pick them up ut of the water! :-)
Oh, we do had kayaks, but it’s been sooo hot up until now.
Nothing like a glass of wine followed by a uc wobble to keep you on track. I don’t really drink because of the meds I used to be on and theUC itself. Once in a while I used to like a frozen strawberry Margarita….especially in summer…now just have power berry Smoothies! :-)
Another perfect Maine summer day. Thanks again and healthy thoughts! Shelly
Hi Everyone! Hey Shelly! I’m glad you’re even THINKING about your boat and the dogs and the great Maine weather! Even thinking about those things is a VICTORY when you’re having a flare, right? I count victories that way. Like I started getting on the elliptical again – not consistent yet, but I just am thankful for the times I can. And those times are increasing too. But I had a flare after eating 3 – count ’em, 3! – rice based pretzels three days ago (of course they had other ingredients like sesame and sea salt ,and me being the allergy queen that I am….) — so I get it when you say one glass of wine through you into a tail spin! Not fun! But I hope things are looking up a bit, and if you’re thinking about boating, that’s a good thing :)
I have a question — I was taking Renew Life Probiotics 15 billion and increased that yesterday to 30 billion. Do you know how much of a probiotic is too much in that way? I know Renew Life also makes the 50 billion and that contains L Glutamine as well so I was working my way up to that to add the L glutamine. Any thoughts or advice? Take care Shelly – Keep up the good work! Hope
Hi Hope,
Thanks for the cheers! I’m really focusing forward. Supposed to stay on the herb another week, but not sure how I’ll play this out.
Anyway, as far as the probiotics…seems somewhat individual. When I first started taking them…metagenics I had to keep upping my dose, then switched to regular vsl and then to vsl 3DS which is Mega dose 900 billion. Right now I’m at 1-2 satchets, but when sever have been to 4. I think it’s about giving your gut time to see what is optimal for you. Seems Sharon and Colleen have similar experiences as I’m sure they’ll chime in.
Congrats on the elliptical. I try and do my treadmill everyday. Usually with TV on…nice and distracting and a small peek of the lake! :-)
Was the pretzel homemade? I would blame the sesames! I don’t like them so easy to blame, plus seeds can be problematic for some and definitely when flaring.
Oh Colleen, I’m sure the wine is mostly about the “forbidden” sugar. That is the topic that has come up over and over n here and Adam has written about a bazilion times! Alcohol is just not good for UC! Although a few have found they have been able to tolerate the hard stuff n occasion…vodka, I think?! Just fyi!
Best All…Shelly…and the boat is still afloat!
Good stuff, as always Shelly! Thanks!
Hope, Shelly’s right on the mark with her probiotic advice, I think. When I started VSL, I was already on the SCD for over 6 months. I started pretty aggressively with VSL but had been on weaker probiotics before that. I had an agonizing week of die off but then took a major leap in my healing. It’s all really individual. I’d say go slow since you’re just starting out. If you’ve been doing well on Renewlife, then I think your plan to slowly increase it is a good one. I saw your other post about yogurt. I use the Yogourmet yogurt maker and have never had any problems–the temp is right on. The container is plastic though. I think you can purchase a separate glass one. With the 24 hour yogurt, you’re going to get 700 bil plus per cup so it’s very powerful. But go slow there too–some people don’t react great to the yogurt at first. I don’t know if its the casein protein or just the large dose of probiotics being introduced to the system.
ok…so my tablet doesn’t always let me go back to correct the “auto corrects”…so just enjoy the them. It’s beginning to seem like a mad libs fill-in!:-)
Colleen – Thank you for the advice! I’ll remember to pace myself with the yogurt when I start it. I should be getting the yogurt maker by next week. And I’ll stick to 30 billion Renew Life for now, and then remember to go slow at first with the yogurt. I have never had the VSL – not sure what that is. But I’m hitting the SCD this weekend in a much more serious way, so thanks for the help!