posted
Having a colonoscopy on Friday which I am completely dreading! I have been having low abdominal pain, especially in the lower right quadrant, and recently put on Cipro for either infection from diverticulitis or SIBO.
I guess I really need to have this, in order to see if I do have diverticulitis, but I have been completely freaking out and might end up cancelling it like I did one other time.
I am so afraid of the prep, not the actual procedure. I am already fatigued and am so nervous it's going to throw my body for a loop and set me back. I have already had a terrible 6 months. I don't know as this GI will have any answers for me about SIBO, or yeast. I understand ruling out cancer etc, but I wonder if it will just lead to another dead end and put me through torture on the way there.
Maybe I need a different GI. This guy doesn't get me, or what Lyme treatment is all about, and also is quite fresh I might add. I don't want to create a case against him, just so I can back out, but I wonder if I might feel more comfortable with another Dr., who is more Lyme friendly....if there is such a thing.
Anyone have any experiences with a colonoscopy as a Lyme Patient? Did it seem worth it? The prep is Fleet Suprep along with Dolcolax pills to start. Ack!!! I can just feel the cramps now!
-------------------- "Yeah, I miss me too." Posts: 235 | From NY originally registered in 2008 | Registered: Nov 2012
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posted
If you are not comfortable with this doctor why not get another one? I have never found a GI doctor who knew anything about Lyme.
I have had two colonoscopy's and you sleep through them but you are right the prep is the hard part.
I had Lyme both times when I had the test and have colon cancer in my family, so I didn't have a choice about having one. I did get a lady GI doctor which made things a bit easier.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
I had a colonoscopy when I had lyme. The prep isn't fun but it's not horrible either. I was really tired from the prep and weak. The procedure itself is nothing. You literally wake up and you're done. I think you will do fine. My GI had me drink gatorade too so as not to get dehydrated.
You will do okay. I was freaking out too and honestly I shouldn't have.
Posts: 238 | From new england | Registered: Feb 2013
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posted
It won't show SIBO. That is in the small intestine.
He's "fresh"??
You'll do OK. I think the worst part is having to ingest jello that is filled with crap! No pun intended!
Next time I'm going to come up with my own creation so I have something safe to eat!
GOOD LUCK!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I have had severe gastro issues but was fine with the prep. I used Pico Salax.. (sp?) I have had 2 colonoscopies over 7 years. The first required drinking what seemed like gallons of water followed by dulcolax and that was more difficult. The second was much easier and I didnt mind the thought of having a clean colon..
posted
I just remembered about the prep. My first colonoscopy I did one of those mixes you get at the pharmacy. Didn't taste great. Second one-my GI had me do a huge bottle of gatorade mixed with jar of miralax. It really wasn't bad as at least it tasted okay. May be something to ask your GI?
Good luck
Posts: 238 | From new england | Registered: Feb 2013
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posted
Thanks, I have to call tomorrow. I have some questions I need answered, to put my mind at ease.
He is "fresh", in that he doesn't get Lyme, and sort of snidely, made a comment to me at my last visit. He isn't a horrible guy, but probably just wants to do the scope and get on with whatever answers he can or cannot give me. Not much understanding coming from him though. I have had so many tests done to me in 5 years of Lyme treatment, I haven't minded any other them. It this one that really freaks me out.
I'm 58 and I need to have one done anyway. I am the first time slot on Friday, so I will have it overwith early in the day and can rest. This Suprep stuff is grape flavoered and he said it is "much" easier that the other stuff he used to give....which is why I cancelled last year.
I am in Delaware and it's really had to get into see these GI's. I live in a resort town, with alot of retired people. Getting into a GI is almost as impossible as a Orthopedic. :-)
I went back to this particular GI because I was a previous patient, and with this last intestinal problem, I wanted to be seen quickly. Not in 3 months!
I hope I can do it. I hope.
-------------------- "Yeah, I miss me too." Posts: 235 | From NY originally registered in 2008 | Registered: Nov 2012
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and it doesn't seem as bad. I don't know. I'm not sure this guy will offer anything else. He's one of the John Hopkins, rigid types. I will ask though...and I am starting to wonder if early morning is a mistake, because the second dose of suprep has to be taken 4 hours before the procedure. That means I have to get up at 4AM to do it, and will I still be running to the bathroom? Hmm,maybe a later time would be better.
Honestly. Maybe I will just get a full body scan and forget this.
-------------------- "Yeah, I miss me too." Posts: 235 | From NY originally registered in 2008 | Registered: Nov 2012
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posted
You'll be fine I promise you. It wasn't as bad as I thought, I thought after all that 'purging' I'd be in bed constantly but no, I could sit up and rest with the bathrm a few steps away. Truly - I'd do it again over all the tests I've had an I'm pretty fragile. Good luck!
Posts: 394 | From Southeast | Registered: Oct 2012
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posted
If this doctor is snide and dismissive of you I have a suggestion that might help a lot--bring another person with you to any appointments you have with him. Have your friend sit there with a notebook and pen. I guarantee you he will be more polite and respectful.
I have done this when I thought a doctor was ignoring me, and it really worked.
Also, we have an elderly friend who doesn't speak up much when she's at the doctor and therefore gets ignored and brushed off. I had our friend prepare her list of questions beforehand, and when we went into the doctor together I read off the questions to him one by one. Her doctor was pretty savvy and knew to address his answers to HER and not to me. Our friend was very satisfied with how this went and felt her questions were addressed.
I think having an observer in the room makes the doctor more attentive, alert and aware.
Posts: 261 | From Nebraska | Registered: Jan 2010
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I had a colonoscopy while having acute, bad lyme symptoms.
I was terrified of the prep in the surgery. It was not as horrible as I imagined (the anxiety working up to it was way worse).
My Lyme symptoms were actually LESS the day after the colonoscopy. I'm convinced the prep acted like a colonic and actually cleared a lot of die-off that was harboring in me.
I was also given suprep and had to take the second dose around 4am (colonoscopy at 8am). I think it was better to do this early. I was groggy and didn't have the energy to be full of anxiety because I was so tired.
During the prep, it was like having diarrhea WITHOUT the pain or burning. Honestly, it wasn't horrible and it actually helped me detox.
To help with the prep, I started changing my diet 2 days before surgery, so you should only eat very soft foods on Wednesday (I had stuff like mashed potatoes, poached chicken, bananas, etc....).
On Wednesday, make a good broth to drink on Thursday. I made a nutritional chicken stock to drink the day prior to surgery too (simmered chicken, celery, carrots, onions, parsley and bay leaf for several hours and then strained it well).
I was having horrible pain in the lower, right side of my stomach. I thought it was my ovaries, but the gyno assures me it was GI related.
I'm sorry your doc lacks bedside manner.
My the way, the colonoscopy did show nothing wrong BUT the GI doc told me I'm having bad spasming in that area.
He said he uses peppermint oil to relax the colon when he does a colonoscopy. I started drinking more peppermint tea and taking peppermint oil capsules. It helped.
Lastly, my lyme doc right after all this diagnosed me with h pylori. The GI doc gave me a stool test and it was negative. During the same week, my Lyme doc had me do a BLOOD test for h pylori it was glowingly positive.
Since I treated for h pylori, the pain has also lessened.
Posts: 2839 | From California | Registered: Jul 2012
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posted
I agree with tailfeathers. I've had several and like I said above, the worst part is feeling like I'm ingesting bad food .. via the artificially sweetened jello. That stuff is so bad for you and I can't do the sugary stuff either.
I'll make a plan next time!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i have diverticulitis and ibs. i have those things done every two years for the last couple of years.
it's a piece of cake, really. worst for me is the iv because i bruise so easily. big half dollar black ones.
the prep is annoying and my butt ends up like hamburger. i hate it. the golytly i throw up within a few minutes, can't take it. there's some new stuff that taste like berries or something. you don't have to mix it. cna't remember the name.
if you don't like the guy, get somebody else. that's 90 percent of it. no doctor except for llmd's "get" lyme. that's just the way it is. you're better off not mentioning it.
and yes i mean, diverticulitis, because i'm in another flare. it's diverticulosis when it's not inflamed, so yep, another spell.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
It is no big deal at all. You will be fine and it won't affect your Lyme in any way.
I had to have one a year and a half ago for what turned out to be a Lyme issue but you never know, better to cover all the bases.
I had two polyps so I was happy to have them removed.
My advice with the prep...when your Abdomen starts grumbling run to the bathroom. Pre-colonoscopy I wouldn't think of doing a coffee enema. Now, not a big deal.
And.... You won't have to do it again for 10 years.
I don't think you need a llgastro. You are just ruling other things out.
Good luck.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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My stool was tested at Metametrix for H Pylori and came back neg. I think I have a problem with my pudendal nerve (google it) and that is what is causing my pain. My LLMD mentioned it to me. People with this problem have GI issues, bladder issues along with a host of other symptoms.... all of which I have.
But I understand I need to get this done no matter what, in case there is some diverticulitis in there. I need to know that. I will ask my LLMD about blood testing for H Pylori as well.
I think I will be ok as long as it isn't horribly painful. I keep thinking this is going to be like a really bad intestinal virus with cramp and chills and nausea. Maybe it isn't going to be that bad.
Sorry to be such a baby.
-------------------- "Yeah, I miss me too." Posts: 235 | From NY originally registered in 2008 | Registered: Nov 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
if you have lower left abdominal pain which goes across the right, then it's diverticulitis. they get infected and get all inflamed.
many people have diverticulosis and have no problems. unlike me, i have an ongoing attack practically every other month.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
No cramps or pain at all. For a few hours you will go to the bathroom about every 15 minutes. Then it's done.
In the morning I think you drink more, again, almost over.
The procedure is painless. Bit of pressure. It's pretty cool because you can watch the procedure on a screen. You will feel so relaxed.
I got nervous when I got into the procedure room. The instruments, quite long, we're a bit scary. They know this and quickly get the meds going. I don't even remember the beginning.
You will be great!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
I don't have that kind of pain randibear. It's lower right like near my ovaries. I have had a sonogram of my ovaries and pelvis. Showed nothing. That's why I am pretty sure this is the pudendal nerve acting up do to Lyme.
Anyway, I don't feel as freaked out now. Thanks guys.
-------------------- "Yeah, I miss me too." Posts: 235 | From NY originally registered in 2008 | Registered: Nov 2012
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posted
I've NEVER had nausea and chills from a prep. Maybe a tiny bit of yuck feeling from having to drink the stuff, but it's NOTHING like a virus. Not at all.
NO PAIN from colonoscopy. You will be totally OUT. (unless your dr is an idiot)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
It's an easy procedure for the most part. I did mine without anesthesia and watched it on the monitor. It was like spelunking.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Eeks - you're not going to be given 'conscious sedation'?? Awake during a procedure doesn't seem like such a good idea..I didn't even know that you *could*.
Posts: 394 | From Southeast | Registered: Oct 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I was AWAKE for the colonoscopy. Some docs do it this way (my brother also did it like this and he chose to do it without anesthesia, it's really NOT painful).
It was fine being awake (and I'm VERY squeamish), but believe me it freaked me out was told right before surgery I'd be awake. The drugs actually give you a break from all the pain for awhile and you really don't "feel" what's happening very much. I'm serious. You'll be so relaxed you won't care.
The doc needs to hire and anesthesiologist if they put you out all the way. It was a nurse who administered the "relaxation" meds. This was done at the hospital too.
By the way, when you're doing the prep set yourself up right by the bathroom (you'll have "the urge" several times). Watch something on netflix or read a book and pause whenever you need to go. Distraction was how I got through it.
If you do wind up having the same thing I have, let me know. I have some other things I do to alleviate the pain. For me it felt like someone was driving a knife into my stomach sometimes. I couldn't stand when I got these attacks.
Yes, my lyme doc said it was nerve pain too. It was from all the inflammation and was pressing against the nerves. I have some bladder stuff too (again, related to inflammation).
I also had the metamatrix stool test and another one. Both said negative for h pylori.
Even though I just ran ANOTHER stool test that said negative, my lyme doc wants to explore h pylori again and we're going to talk about it at the next visit.
I swear, it really felt like ovary pain. I'm still amazed that it wasn't. It was in the exact same place where I had a cyst on my ovary 20 years ago.
A breath test is suppose to be the best way to test h pylori. I know someone else with Lyme where it took 20 years to find out she had h pylori (stool and blood tests were negative, but she finally had a positive breath test).
Also, the meds are water soluble and leave your body quickly.
You will be groggy afterwards. You aren't suppose to do anything for 24 hours afterwards (including signing legal documents).
I would plan to go to a restaurant with whomever drove you and eat afterwards (you'll be hungry, but don't over eat), then plan to go home, take a hot bath, and sleep for as long as you need.
posted
I am pretty sure they told me I wouldn't be awake, but I will ask tomorrow just to be sure.
-------------------- "Yeah, I miss me too." Posts: 235 | From NY originally registered in 2008 | Registered: Nov 2012
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I was awake for one of my endoscopies so they do give you the choice. I was never offered general anesthesia for my colonoscopies. Always sedation. I did wake up during the second procedure when they reached the top of the colon and that was a bit painful. Every scenario is different but i do believe they are quite routine for the most part.
posted
I called the GI's office this morning and spoke to the procedure coordinator there. She was very nice, but the more I know the more freaked out I become.
She must have been looking at the notes on the computer while she was talking to me. She mentioned something about Ulcerative Colitis. I hadn't even thought about that. I keep thinking SIBO or yeast. But possibly this is why my Metagenics testing came back neg for any overgrowth. Maybe this is why I have been feeling so awful for the last 6 months.
At my last appt with this GI, he looked at my blood tests for inflammatory markers. Perhaps this explains the pain in my right side and that feeling of tenderness there.
Now I am really upset and I don't know how to calm myself down until Friday, the day of the procedure. I only slept half the night last night, worrying.
So if he dx's UC, I don't want to take steroids. If it is UC, is it UC caused by Lyme, or is it standard UC. I am very confused about this, and I know that this completely "un" Lyme Literate GI will want me to take whatever is on his list of UC drugs. He has already commented on how many questions I ask.
Anyway, today is Monday. Friday seems like a long way off. I hope I don't work myself up into a full on Lyme Relapse.
I feel the other shoe dropping.
-------------------- "Yeah, I miss me too." Posts: 235 | From NY originally registered in 2008 | Registered: Nov 2012
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posted
daphnesmom-Try not to worry. They thought for sure I had crohn's or ulcerative colitis. They saw nothing. They even sent me for pill endoscopy they were so sure they missed something. That is where you literally swallow this pill that has a transmittor on it and it takes pics or entire colon. Fun!!
But, in the end, they found nothing. All lyme related. I know we are all different but don't waste your energy worrying all week. I know, easier said than done as I am a huge worrier.
Wait and see what colonoscopy shows and then you can deal with what you have to. You will do fine. Just my thoughts
Posts: 238 | From new england | Registered: Feb 2013
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I was just reading reviews for Seabuckthorn Oil, and people commented that it helped Ulcerative Colititis, in addition to improving their skin and nails.
Posts: 6950 | From Lancaster, PA | Registered: Feb 2004
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posted
Oh, yes Carol, My anxiety about this is thru the roof, with this particular dr.
He said that and he also said after going over my history.....and I quote...."No real Dr. wants to see a patient like you."
My husband sees how anxious I am about him and thinks I should wait until I can see someone more Lyme Literate in NY.
When I spoke to the procedure coordinator about this yesterday, she told me that he is really abrupt and sometimes patients become offended...and she understood my feelings. When I told her that subsequent to my last appt with him, I had called my LLMD in NY and they prescribed Cipro for my symptoms, as that had worked in the past...she said I should tell my LLMD to try Neomycin next time as that was what her old employer used, and he is now retired.
What??? I said, shouldn't this GI being treating me with that if I need it? She didn't answer me.
Not feeling very confident, but I am scaling back my diet as if I am having the colonoscopy on Friday.
I know I need one, but I also know that this kind of stress isn't good.
My gut is feeling better since taking Cipro and ramping up my probiotics. Maybe I should just leave well enough alone for now,and get with a GI, I actually trust and has worked with other Dr. H patients.
I do take magnesium and today I a going to just try to get out and relax and not think about this.
I am also touching base with my LLMD's office to see what they think I should do. They know me and the rough road I have traveled.
-------------------- "Yeah, I miss me too." Posts: 235 | From NY originally registered in 2008 | Registered: Nov 2012
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posted
I know you don't need any more advice, but I had a colonoscopy in October and it was no sweat. I had two growths removed and one was quite large. Since they didn't know at the time if the larger one might be cancerous or benign, they tatooed the area where they removed the problem. I speculated later if the tattoo was a skull and crossbones, or directional arrows, but I really did not have any problems. I had some problems that might have been diverticulitis early on with small amounts of blood, but it went away and no one is sure where the blood came from. Although my symptoms were not related directly to lyme, my family has a history of colon polyps, I am glad I had the colonoscopy and will have a follow up one next October just to make sure that i don't have any more polyp growth. Just make sure you are near a toilet when you start your prep. It was less worse than I expected, too. I know you will be fine and are over thinking this. So your doc has painfully poor bedside manners. Get the colonoscopy and go straight to a lyme literate one with a better attitude. After, tell us what kind of tattoos if any you decide on.
Posts: 482 | From Oregon | Registered: Feb 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I've had three of them and it really isn't that bad.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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