What have your experiences with Neomycin been like?

Sure, here are my symptoms:

-bloating (to the point of visible distention) and trapped gas that I cannot expel

-occasional stomach cramps and pains (especially in the lower left quadrant of my abodmen)

-constantly feeling like someone has poured cement in my intestines and left it there to dry

-change in bowel movements (I now have to force myself to poop if I want to have any sort of bm at all, even though my stools are soft almost every time). Additionally, stools float and look oily. I have gotten stool tests back that say there is excess fat in my stool, meaning that malabsorption is occurring. 

Another thing worth noting--I have tried rifaximin before and it did not make me feel better. I have never had a colonoscopy or an endoscopy before.

Hope this helps.

Going on what you say above, i would ask them to look at your small bowel before trying the neomycin. it sounds like they are "guessing" as they say excess fat in your stool is "a sign" of bacterial overgrowth. they can look at your small bowel by first doing a contrast mri to check for obstruction,narrowing, strictures. & then secondly do  a camera pill endoscopy which passes through your small bowel taking thousands of images. it looks for tumours, polyps, tissue changes, ulceration & inflammation. i have had both-they are non invasive, & they found from the pillcam that i have very fast transit (causing my chronic diarrea & pain).  these tests would be more definitve.  you could also ask for more specific testing for bacteria (which i don't know much about, but would probably involve more specific stool testing). i think its terrible they're giving you a drug after just guessing you may have bacterial overgrowth-they should be more definitive before prescribing drugs that could give you adverse side effects. if this has come from your gp, maybe ask for a gastro referral at your local hospital instead, gp's are of course "general practitioners" not gastro doctors. hope this helps a bit. x

Wow, you have perfectly summarized my current feelings regarding my experiences with my gastroenterologist--at this point, I am starting to realize that he does not know what is going on with me and, instead of telling me this directly, seems to just be throwing prescriptions at me and hoping one of them works (which is beyond frustrating). 

Thank you for your response--hope all is well with you (and continues to be so).

Hi Melissa, thanks for your good wishes to me. Unfortunately, I am still not well, have had all the tests i mentioned to to you. my gastro consultant is at a loss as to what to do next, although he has been very thorough in testing with colonoscopy, contrast mri, pillcam endoscopy of small intestine. only things found are high calprotectin stool test for inflammation, a 2nd polyp was removed during colonoscopy, & fast transit of pillcam(was in & out in 4hrs!). we are now trying some other meds to mask pain/try to control & slow down bowels more(band aid meds) since there is nothing else to go on, & i will be starting a short course of steroids on the back of the positive stool test when my hubby has got rid of his cold. my consultant has also asked another consultant  at another hospital to have a look at my "case" for a 2nd opinion (his suggestion) for a fresh pair of eyes in case there is something he has missed.  the point is we are only trying meds now to "cover up" symptoms as there appears to be nothing else to go on, but he has done all the relevant tests first before we start throwing meds at me. i desperately want to get back to work & normal life instead of being stuck at home being dictated by my bowels whether i can leave the house or not.

It is absolutely reasonable for you to suggest/request these sort of tests to your gastro consultant; i have often had to put things in front of him to get tests done rather than him suggesting them. when  i have done this i have alsways justified  why things should be done  backed up by my symptoms.

personally hun, i would get in touch with your consultant, & ask him perhaps to start with more specific stool testing  for  his hunch of bacterial overgrowth & calprotectin stool test (tests inflammation), befoore starting the neomycin. depending on those results you could then go on to ask for colonoscopy, contrast mri scan small intestine, & pillcam.  if the stool test is positive for bacterial overgrowth- then the neomycin route would be right. if its negative for bacteria, but positive for inflammation (calprotectin test), the consultant should then go on to do colonoscopy(scope of large intestine) next. don't want to go to far ahead..... but that's normal procedure.

hope this helps, let me know how you get on hun.  x

I am so sorry that you have to suffer through that. For me, I hate when I can tell when my bowel problems are running my life or causing me to behave differently than I normally would--I end up feeling so powerless and frustrated because of it. No one should ever have to feel that way and I certainly hope you are able to stay strong. 

My sister has a good way of thinking about it (since she too suffers from numerous digestive issues): pretend that you are a strong and powerful entity, something that has become so strong and threatening that a virus is now attacking you to check your power and bring you down. Just always remember: you are strong. I think of this whenever I start to feel weak or hopeless.

Good luck with your struggles. I think I needed someone to tell me to be a bit pushy with my GI specialist. And now, actually, I am going to see a naturopath to get a second opinion so if you want to know more about that you can always message me.

-Melissa

Hi Melissa. I am good at being strong on the whole thank goodness (with the odd feel-sorry-for-myself-day).  i had cbt about 6.5years ago which retrained my thinking to deal with stress, anxiety & depression better, & it was a game changer.  i am good at not "what if'ing" & not thinking too far ahead, just dealing with the here & now situation.

i do get on ok with my consultant, but we have had our up's & down's; sometimes he has done say a colonoscopy, found that to be normal & then just writes saying I'll catch up with you at our next appointment (which may be months away)!! well that's no help when you're off work & still suffering unable to lead a normal life!! it's times like that i've had to put in front of him"well what do we do next? you can't just leave me like this for months?" & it spurs him into further investigation.  i do rate him too, it's just sometimes he seems to get into a tunnel vision not putting himself in the patient's shoes & thinking "what else could this be/what it is the next plan of action?"  of course he is nhs & ridiculously under pressure & department under resourced, but i can't do anything about that, I just want to get better & not lose my beloved job, so have had to push.  you do have to stand up for yourself & push/justify with gastro depts (many people on here have found that, you are lucky if you don't have to)  so you must be pushy if you feel you are being fobbed off or not properly tested & just having meds thrown at you first.

i am always wary of natural products to try as opposed to prescription meds; i have tried a couple in the past & they made my problems worse in both cases.....but good luck to you with the naturopath hun.

keep me posted how you get on with both your consultant & naturopath. 

x

 

Okay, will gladly keep you posted about my current situation and how things are going with the naturopath. Sending my wishes your way!