Not doing well at all!

Hey everyone.

Well, it has been about a month since I had my colonoscopy and I have had nothing but issues since! I ended up getting a vaginal infection from the whole prep stuff I am guessing. I mean It is odd since I have Never really had a vaginal infection before until now. Doctor thinks maybe from all the prep and trauma it threw off my PH down there and an infection took hold, who knows. Well I was treated with a gel that I put up there for 5 days. It got better. Well I got my menstrual cycle 2 weeks ago and right after it ended I started getting issues again down there. And NOW my bladder had been killing me in pain for the last 6 days! ( I already have Interstitial cystitis which is a painful bladder disease which the low dose antibiotic helps to keep in control)so this is not good. I have to take a low dose antibiotic to help keep the Urinary infections I am prone to at bay. Well I ended up having to up the low dose antibiotic to full strength yesterday and already my Intestines are Not liking it!!! I woke up today feeling more intestinal pain and cramping. I mean I have been not doing too bad since the colonoscopy intestinal wise, I mean I am not great, but still not horrible as before. Well now with having to up the augmentin, this is making me worse.

I don't have diarrhea or anything, but I got that feeling where I am crampy and feel like I can get it, if that makes any sense. I have been having issues for well over 2 years now with intestinal pains and issues. My main symptom is the BAD intestinal pains and crampiness and feeling like I always gotta go. I usually only go once a day though, but I always feel like I gotta go and have severe pain all the time. Well after the colonoscopy I felt awful for the first few days. Then I felt a little better in the gut. Well now with all this vaginal and urinary issues that were caused by the stupid colonoscopy, now I have to be on higher dose antibiotics and I know that is messing me up ever worse in my intestines! I am scared to death I am going to get worse or even C-diff!!! I take a TON of probiotics. I mean like over 100 billion counts a day. I am even taking florastor ( saccromyces Bualarrdi) daily in hopes that it is helping. I mean my fear is that when you drink that prep before you have the colonoscopy, well that flushes out all your bacteria and leaves you vunerable. It can take months to years to get that back in balance, even for a healthy person. Well I am already taking antibiotics low dose for years in order to treat my Urinary issues. That leaves me even more vunerable. I mean I know I take probitoics, but who knows how well those really work...

So here I am in a NOT good position. My colonoscopy did not show anything really and neither did the biopsies. So GI doc is putting the blame on severe IBS. I am sorry, I don't even believe in IBS! That just means they don't know. I have so much shit going on with my health and now my husband is having some health issues and that is stressful too. My body cannot take much more here. I am regretting even doing the colonoscopy as it has made a mess of my other health issues now and I still have No answers really. Now I have to be on high dose augmentin to try and get my bladder under control and that is wrecking havoc on my already messed up digestive tract! I just want to die sometimes.. My life is nothing put pain!

Thanks for listening. I am just scared and don't know what upping the augmentin is going to do to me. I CANT get diarrhea! Every time I get diarrhea for some reason, it messed up my bladder and I get infections! But I have to treat my bladder as I cannot let that go either! I just cant win!

Aw, Ihurt, I'm so sorry to hear it. Are they able to do anything more as far as diagnostic tests, or would pretty much anything at this point just cause further upset? I hope you can get things under some control again and feel at least somewhat better. Sending you a big hug! I hope the augmentin works without exacerbating anything!

I am so sorry your not feeling well I hope you get better soon take care

Thanks for the replies.

Cat-a tonic: No, gastro does not want to do anymore tests, he says there is really no tests left he would feel I need to do. I have had stool tests, blood tests, MRE of small bowel, CT scan without the contrast drink, and colonoscopy. I just don't think these tests are always perfect. I really don't know what is wrong with me, I mean I don't. It could be so many things, but I just don't like that IBS diagnosis. It is just as bad as the IC diagnosis for the bladder! It just means they don't know! Very frustrating. The only bad thing is that I am left to suffer with no help. All the meds I took for IBS either did not help or they caused bad side effects. So I am stuck only with the heating pad for some relief. This is no way to live.

Oh gosh, the bladder issue is horrible to deal with. That pain is like no other. It is debilitating. The augmentin is already upsetting my intestines, I can feel it. I am having more cramping and pain now. This sucks! I mean I have to be on it for 10 days and I am only one day 1!! Just shoot me, honestly, I am fed up with all this!:yrolleyes:

Thanks for the support, I appreciate it...

Ihurt - I understand some of your frustration. I'm just starting on the diagnosis trail again, as my doc is questioning my original diagnosis of Crohn's. :confused2: He says he thinks it might be IBS but he has to rule out all the other possibilities first. Doesn't that really mean that once everything else is ruled out, we don't really know what's wrong with you, but you have a sensitive bowel that hurts all the time? :ymad: Maybe they should drop the I and just call it "BS".....:lol2: In a way I'm hoping that he finds something tangible so that I have an answer, rather than just saying it's IBS. :ybatty:

Hi Cindy,

Thanks for the reply. Geez, I am sorry you are struggling with the while getting a diagnosis too. This sucks, honestly. I mean how can they have diagnosed you once and then want to take it back??? WTH is that about?? I mean did they actually see evidence of crohns at one point? How can they take it back? You are so right, it should be called BS, not IBS! Ha ha, that made me laugh, but you are right about that!

I hear ya about wanting them to be able to diagnose you. It does suck living with God awful pain with no answers as to why. I feel like I am living in limbo honestly. It really sucks because I have all these other health issues that are being aggravated by the other. I mean it is making life very hard to live.. I hope you can get some answers and the help you deserve. I am starting to lose faith in doctors..

mccindy said:

Ihurt - I understand some of your frustration. I'm just starting on the diagnosis trail again, as my doc is questioning my original diagnosis of Crohn's. :confused2: He says he thinks it might be IBS but he has to rule out all the other possibilities first. Doesn't that really mean that once everything else is ruled out, we don't really know what's wrong with you, but you have a sensitive bowel that hurts all the time? :ymad: Maybe they should drop the I and just call it "BS".....:lol2: In a way I'm hoping that he finds something tangible so that I have an answer, rather than just saying it's IBS. :ybatty:

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I know what you mean. This whole diagnosis thing is a pain (literally!). One doc says one thing, another doc says something different. I also have chronic back pain so now it's front and back! I had a flexible sigmoidoscopy in 1995 and that's when the Crohn's diagnosis was given. The doc then told me he saw crohn's in the junction of my small and large intestine. So this doc wants to see the reports to find out how the doc diagnosed -just visually or with biopsies or what. I was drugged so I don't remember! :yfaint:

How did the doc see the junction between the small intestine and the large intestine during the flexible sigmoidoscopy? I thought with that test it only can visualize the lower part of the colon? Hmm, maybe I am wrong.

You are right, doctors do Not seem to know much about these issues. It is so frustrating. I just do not trust them anymore. You have to ask yourself how is it that so many specialists in the same field can look at the same person and all have a different diagnosis!! WTH is that all about? Didn't they all practice the same medicine??? Hang in there. Hope you get some concrete answers soon! Hope we both do!

mccindy said:

I know what you mean. This whole diagnosis thing is a pain (literally!). One doc says one thing, another doc says something different. I also have chronic back pain so now it's front and back! I had a flexible sigmoidoscopy in 1995 and that's when the Crohn's diagnosis was given. The doc then told me he saw crohn's in the junction of my small and large intestine. So this doc wants to see the reports to find out how the doc diagnosed -just visually or with biopsies or what. I was drugged so I don't remember! :yfaint:

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Hey,

I'm not sure whether the colonoscopy prep could be causing your recent symptoms. I've done a few preps, and known many other people who have done them, and never heard of anyone having problems as a result. I also saw a news story recently that said those yoghurt drinks that are supposed to contain probiotics have had to stop advertising themselves that way, as there was no beneficial effect from the probiotics like they claimed. I'm not sure if the same is true for probiotic supplements in other forms.

I get how frustrating it is having no real diagnosis, but perhaps now you've done the colonoscopy you could take a break from hospital and doctor appointments? The tests and appointments often cause more harm than good when they're so stressful and you're still not getting any benefits from them. So maybe now the colonoscopy's done would be a good time to stop having to put yourself through any more (unless your symptoms get worse) and give yourself a break from having to think about whether tests will help you or not?

Also I'm sure you've explained this before, but which pain killers have you tried?I think I remember you saying you didn't want to take amitriptyline? Is there a reason you can't take opiate painkillers like codeine? There may even be stronger ones available, though I think codeine is the strongest you usually get outside of hospital except for special cases. Codeine slows the bowel down, so you wouldn't get diarrhoea. I get no side effects from codeine, and even though I'm taking it long term I haven't developed much of a tolerance (one of the risks with codeine), so it still provides me pain relief and I find it very effective.

UnXmas said:

Hey,

I'm not sure whether the colonoscopy prep could be causing your recent symptoms. I've done a few preps, and known many other people who have done them, and never heard of anyone having problems as a result. I also saw a news story recently that said those yoghurt drinks that are supposed to contain probiotics have had to stop advertising themselves that way, as there was no beneficial effect from the probiotics like they claimed. I'm not sure if the same is true for probiotic supplements in other forms.

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Well, keep in mind that not long ago European regulators deemed that it was not legal to claim water will prevent dehydration.

"Water can’t prevent dehydration (according to the European Union)"

http://www.drbriffa.com/2011/11/18/water-cant-prevent-dehydration-according-to-the-european-union/

Probiotics are a growing field, one that may pan out as being beneficial, but there is also the possibility that some strains might not be so helpful. From what I've read, probiotic makers needed to stop making specific claims due to drug regulations. Drugs are allowed to make claims, while food items are legally not. I would guess that pharmaceutical firms are looking into some probiotics, possibly taking some through the expensive approval process, along with obtaining patents. A recent Wall Street Journal article even hinted at this recently.

"Probiotics' Benefits May Be More Than a Gut Feeling"

http://online.wsj.com/article/SB10001424127887324784404578143402702878118.html

I like kefir milk, so would probably drink it anyway, even if the probiotics weren't beneficial. It tastes good and offers extra calories that I need right now. It does seem to make my gut feel better, so I'm sticking with it.
As far as the flexible sigmoidoscopy, that's the test they do to look further than the standard colonoscopy. That's what I was told, anyway. That it goes a bit further so the doc can see the junction. Hopefully we both get some answers soon!

Beach said:

Well, keep in mind that not long ago European regulators deemed that it was not legal to claim water will prevent dehydration.

"Water can’t prevent dehydration (according to the European Union)"

http://www.drbriffa.com/2011/11/18/water-cant-prevent-dehydration-according-to-the-european-union/

Probiotics are a growing field, one that may pan out as being beneficial, but there is also the possibility that some strains might not be so helpful. From what I've read, probiotic makers needed to stop making specific claims due to drug regulations. Drugs are allowed to make claims, while food items are legally not. I would guess that pharmaceutical firms are looking into some probiotics, possibly taking some through the expensive approval process, along with obtaining patents. A recent Wall Street Journal article even hinted at this recently.

"Probiotics' Benefits May Be More Than a Gut Feeling"

http://online.wsj.com/article/SB10001424127887324784404578143402702878118.html

Click to expand...

From that probiotic article it seems that lack of proof behind the claims is a problem as well as foods not being able to make the same claims as medications though? Since the article talks about the potential of probiotics, does that mean that the ones currently being sold have not been proven to work?

I like to go to medical sources to get the best answers. Here's a link to a mayo health piece about the benefits of probiotics and prebiotics that specifically mentions yogurt.

http://www.mayoclinic.com/health/probiotics/AN00389

I believe what the article is pointing to is that the people quoted did not think highly of the studies they read. Chances are they were observational in nature, which is typical for health food. There isn't much money put into them. Instead they want to see a higher standard, such as double blind studies.

Even though with double blind studies being done, doesn't mean the product works. Take for example the mention in the article that some probiotics will lower cholesterol levels. Some will look at this as being great, there will be another avenue to lower cholesterol. The top selling drugs, worth billions, have been cholesterol lowering drugs.

Other will say, so what. Approved lowering cholesterol drugs have not been proven to lower heart attack rates definitively. Cardiac events have gone up since the campaign to lower cholesterol levels began decades ago.

Thanks for the replies,

Unxmas: Yeah, I hear you. I mean my gastro does not want to do anymore tests at this time anyhow. But my problem is that I have other health issues that adversely effect my intestines and vice versa. Like right now I have been having awful bladder pain for a week. I finally had to give in a up he low dose augmetnin I take daily to prevent the bad UTI's I get. Well I upped the augmentin on Monday and right away my intestines ad gut started getting worse! I have not had diarrhea yet( thank god as that would be a nightmare for me and my bladder!). But What I do have is Severe pain in my intestines. I mean I was up in the middle of the night with severe intestinal pain and crampy feelings. It was awful. I could just lay there with the heating pad, that is all.

I have tried some pain meds( Tylenol 3) and it did help a bit, but I get sooo constipated from taking these type meds. I am super sensitive. I mean put it this way, I took donnatol awhile back for the bad cramps I was having( like only 1 teaspoon) and that constipated the crap out of me! That is how sensitive I am. But yeah, I definitely need something for the pain. I am a mess from my belly button down. I have severe intestinal pains and pelvic pain due to the whole bladder/gyne issues. It is a nightmare. I mean I am so worried that due to having to up the augmentin I am going to cause myself to get worse( maybe even get full blown crohns or C-diff)! Then what. I mean this is awful. I do take probitoics, not sure how well they work or not. I take two different kinds. I take on that has like 50 billion cultures with 12 different bacteria. I take that one twice a day right now and I also take one my GI doc suggested called Florastor( which is Saccromyes Buallardi). I also eat organic yogurt daily. So not sure if they work, but I figure it wont hurt. They have said that using probiotics while on antibiotics can possibly help to prevent C-diff or antibiotic associated diarrhea. I have been using probiotics for years now. Not sure how well they work, but at least it is something.

Cindy: Oh, ok, I just thought the flexible sigmoid test was the same as the regular sigmoid test. In any event, I sure hope you get some answers and help soon too!

Beach: Interesting links on the probiotics, thanks for sharing it. I think there have been some studies done that do indicate that probiotics are helpful in preventing GI issues especially when on antibiotics. I also think it depends on the brand and type of probiotic. Like for instance, they say the refrigerated ones are the best and are more potent than the ones you would buy on the shelf at the local grocery store per say. Also, it is funny, but now you see all these advertisements for different probiotics that are sponsored by gastroenterologists, like culturelle, and align to name a couple. They must help some people otherwise people would not buy them. They are expensive as it is.

Ihurt - I was floored a few weeks ago about the size of the probiotic market! It is a multi billion dollar market. I would have never guessed. along with supplements, seems anymore probiotics are placed into many items in the food supply.

"Global probiotics market to grow 6.8% annually until 2018"

http://www.nutraingredients.com/Con...iotics-market-to-grow-6.8-annually-until-2018

I've personally not had luck with taking probiotics. The natural probiotic rich foods though seem to help me some.

Hope you are feeling better today by the way!

Just throwing it out there Ihurt but have you been tested for Small Intestine Bacterial Overgrowth (SIBO)? Also did your GI suggest any meds to help treat IBS if it is in fact the issue?

Hi,
I completely understand your frustrations! I have had Crohn's for 12 years and have been having issues for months now, I had a colonscopy and endoscopy on 4-22 and for days after I was absolutely miserable (bloating, nausea and pain). I had to call out of work the day following the procedure then by Friday I actually felt ok but started my period, then last week I had to take a trip to the ER for terrible low abdominal pain and nausea and found out I had a ruptured ovarian cyst. I have a lot of pain and feel like no matter what I eat I feel terrible.

My doctor had diagnosed me too with IBS after the biopsies and scopes were unremarkable and I'm like you I don't believe in it myself and think they only say that because they don't know.

I have never had bladder issues but I have had a UTI in the past and it was horrible so I can only imagine what you are going through. I, myself, seem to have lots of irritation in the female area when I have diarrhea and it's super annoying. I guess it's the constant wiping and moisture that irritate your sensitive parts.

Anyway,
I hear your plight! It does feel like you can't win no matter what you do. And I have no idea how I am going to pay for all the procedures I have coming up but I am trying to stay positive. Good luck to you!

Ihurt...just wondering if you have been checked for endometrosis. I had it and most of the symptoms were the same as my Crohns symptoms. In fact the told me my cecum was inflamed because I had a orange sized chocolate cyst on my ovary...but later I was diagnosed with Crohns.
Hope you feel better soon...

Hi Ihurt, sorry if I took the thread off-topic with the mention of probiotics. I think the point I was trying to make was that it's sometimes better not to get too caught up in trying to identify causes of and remedies to health problems. With probiotics there's no clear consensus about how to use them or whether colonoscopy affects digestive health long term. It does seem that probiotics may help, so you're already doing all you can by taking them, but worrying over things like C-diff is probably just stressing you needlessly, since it's unlikely you'll get it, and even if you do it may be that nothing you've done has caused it and there may be nothing more you can do to prevent it.

Thanks everyone,

Beach: Well, still not feeling to good. My bladder is a bit better since upping the augmentin, but my intestines are now even worse naturally. Still got some kind of issue going on female wise. I see a gyne next Friday so we will see about that. Thanks for the reply and support.

Jennifer: I have tried quite a few meds in the past for IBS and nothing seems to help me and what did help I could not take due to the bad side effects. I see my gastro next week so I will see what he has up his sleeve to offer.. Thanks for the support.

P@ckgirl: Thanks for the reply. Ughh, sorry you are feeling bad too. I always feel horrible when I get my period. It sucks. But it usually awful when my period ends, that is when all the issues start( bladder, female). UTI's suck, but having the stupid IC makes it 1000 times worse. I Hate my bladder!

Mary: Yeah, I have been told I likely have endometriosis. My gyne said that the thing is is that she does not think all my issues are endo related though. She said usually in the case of endo, I would feel WAY worse on my period and then feel better when not on my period. But I feel horrible even when I am not on my period. Not sure what to think there. Thanks for the support.

Unxmas: Thanks for the support. Yes you are right, I really cannot do anything more than what I am doing at this point. I am trying to focus on getting to feeling at least where I cann function. It is just hard because I do one thing to help one problem and end up making another problem worse. I upped the augmentin to help my bladder and it is helping, but now my intestines are all a wreck and feeling worse. I am trying so hard NOT to get diarrhea as that will just put me back with a UTI and it will be a viscious cycle. Ughh, life is just sucky right now! Thanks for the support.