Another Colonoscopy????

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NewToCD
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Date Joined Jul 2008
Total Posts : 57
   Posted 7/10/2008 9:47 AM (GMT -7)   
Hi All - im new here - I was diagnosed about 3 weeks ago after a colonoscopy found inflammation in my latteral (?) colon.
i have been on asacol for 6 months as dr's originally thought i had an infection from travel that caused colitis & was just put on entocort.
Just went to my GI doctor this morning & he wants to do an other colonscopy in 3 weeks. This will be my third in less then 6 months, is this normal?
he said he wants to see if the inflammation is down so he can start weening me off the Entocort & decide if i need to be put on the 6MP's or not.
Personally i feel fine & the recovery & prep for the colonsopies are really tough for me. I feel like it makes me much sicker & it usually takes a couple of weeks to feel somewhat back to normal.
Plus i really dont want to start on any new drugs, I would like to just get off all the drugs in general. I'm just kind of scared of all the long term side effects plus I am 29/Female, recently married & want to start a family in the next few years or so, so that is obvioulsy a major concern for me as i dont want to be taking all these pills while I am pregnant. has anyone been able to control there disease with diet alone?

sorry if that was a lot, clearly i have a lot on my mind lately!!
Thanks for any help or advice!

RK
Regular Member


Date Joined Oct 2006
Total Posts : 153
   Posted 7/10/2008 12:16 PM (GMT -7)   

Hi there and welcome. I also had to have several colonoscopies when I was first diagnosed and found the prep to be more traumatizing than the actual procedures. Unfortunately, they had to get done to be sure of the diagnosis. Once I started taking my medication, I felt a hundred times better. But different things work for different people. Sometimes diet can help but I'm not sure that it has been a "cure" for anyone. You can do a search on this site regarding diets for Crohns but make sure to discuss it with your GI before trying anything.

As for starting a family....it's perfectly normal to be afraid to be taking drugs while pregnant. Everyone questions that at some point. But it is important to have the disease under control BEFORE getting pregnant. This is something that you will need to discuss with your GI and/or OB/Gyn when the time comes.  You will find many posts on here from women who have had very successful pregnancies while on different medications and who's babies are perfectly normal.

Good luck to you!


32-year-old female diagnosed with CD in 2001.
Currently taking Pentasa 1g x 4 times daily. Started Remicade July 2008.


NewToCD
Regular Member


Date Joined Jul 2008
Total Posts : 57
   Posted 7/10/2008 12:50 PM (GMT -7)   
Thanks RK!! As im sure you know it can be very frustrating trying to get a handle on this & figuring out what the best course of action is. I just am afraid that drs just prescribe drugs sometimes without considering other alternatives first.
I guess all the side effects, etc can freak me out too..:(
i have read that the disease must be under control before pregnancy, but this is where i get confused. How do you know if it is under control, or in remission as i have seen people say?
If i feel ok am i good to go or does a dr have to do another dreaded colonoscopy to make sure there is no inflammation?
as for the actual colonoscopy, i agree with you the actual procedure is not that bad, your completely knocked out how bad can it be....:)
but the prep & recovery are just awful, i am really dreading having to do it again in 3 weeks..

Thanks again for the reply, i imagine i will be on here more often in the coming days/weeks/months/years....................

yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 7/10/2008 1:06 PM (GMT -7)   
hey new, welcome! I wanted to add my thoughts about the scope. I understand how you feel. I have a horrible reaction to the versed used to knock me out. the effects of most of the GI tests are worse than being sick! that said, if he feels you need it you might have to. does your inflammation show up thru blood tests? have you had a SBFT?
as for meds, no one likes taking them, for many reasons. the first few months after a dx are rough, as there are so many choices to be made. you might have to be on something for a while and then no meds...it happens! I have met several people (they don't tend to hang around here) who had a bad year or two and then thru meds, diet, or just luck all is fine and they go on with their lives.
I found I couldn't tolerate gluten and have had 6 months of perfect health after just stopping all gluten. you need to get past the next few months, play along with you GI and then see what happens.
keep asking questions! yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Zanne
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Date Joined Apr 2005
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   Posted 7/10/2008 2:35 PM (GMT -7)   
As you have probably read, there is no cure for CD. The goal is to keep the disease in check and keep the inflammation under control. Long term inflammation left to run wild will cause scar tissue and that is ultimately one of the causes of surgery. That is why most doctors want to keep their patients on some form of maintenance drugs to keep any microscopic inflammation at bay. I'm saying this because, I self diagnosed 10 years before the doctors took me seriously and put me on any form of medication. In those 10 years, I don't know how much damage was done. I do know that in the next 10 year, I had to have 3 bowel resections. 2 for active disease that wouldn't respond to any form of medication available, and one for scar tissue that had form into a stricture.

There are many drugs that are allowed during pregnancy and many women on this site who have had multiple successful pregnancies while being treated. You need to get your disease under control first, but you can be a CD patient and be pregnant

As far as the prep for the colonoscopy, have you asked about the pill preps (Visicol, and Osmo-Prep, do a web search for more info)? They are much easier to tolerate. Also, if you have any doubts about your doctor and his treatment plans, you should ask for a second opinion. It doesn't mean you need to start over with more tests, they should be able to use the same tests you have already had, but it might give you some peace of mind.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


NewToCD
Regular Member


Date Joined Jul 2008
Total Posts : 57
   Posted 7/10/2008 3:35 PM (GMT -7)   
Thanks for all the replies - now lets see if i can address all the questions & thoughts...:)

as for other tests that have been done - I had a couple rounds of blood tests done that all came up as positive indicators of chrons (sedimentation, positive for b-12 & iron aneamia & one other indicator test,but i forget what it is called, the report had a reallly long name)
I was told & have read that the only true way to diagnose is to have the scope & the other tests are just indicators. I also had a CT scan to check my small intestines & they were clear so that is good as it seems the inflammation is only in my lateral colon.

im not sure what a SBFT is? again totally knew to this & def not up on the medical lingo..:)
i have heard that Gluten Free can be helpful & have been considering trying some diet changes, my doc wanted me to go low fiber for now, which has been really hard (no fruits & raw veggies!!!) - I just love eating too much!!!

I understand that there is no cure for Chrons but i also have begun to understand that everyones experiences have been sooooo different, which really makes this even more difficult since there is no definitive answer on what the best approach is.

I am still confused about what this remission state means. Is it different for everyone? I understand that it means you are no longer inflamed, but is there a way to know that for sure without a colonscopy. Can a colonscopy bring on a so called "flare"? If all the inflammation is down can you attempt to ween off the pills?
i feel pretty good now, have been running/working & going about my daily life (the only thing i really had to cut out was drinking!) but that doesnt mean i am necessarily in remission, does it?

i know some of you may think im nuts for not wanting to be on the pills & obviously you all have much more experience with this....maybe i am just in a little bit of denial still!!

as for the babies - it is at least 2-3 years off so hopefullu (knock on wood) this will be under control by then, it is just obviously something that jumps in your head as a women whenever you hear you have something seriously wrong with your health

Thanks again for all the input & advice - it is really helpful
They ccfa has womens support group starting next week in my city so im considering going to see what it is all about
has anyone ever been to one of these?? personally i've never been to any kind of support group so i plan on sitting in the back & being quiet!!

gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 7/10/2008 3:56 PM (GMT -7)   
HI and welcome to Healing Well . Did your Dr. diagnosis you with mild, moderate or severe crohns? Some of us are severe as I am and some do good on just one med. I ahd resection done and on no meds at this time but they are there if I need them. Some of the meds don't have as many side effects I am looking at ones that do if I go back on meds. Your GI is the one with your help rhat has to decide on what you should do? If my systems start I have to call mine. Sure don't think your nuts and none of us want to be on meds some are because it is what there DR. and them have decided. I will say that CD is a complicated disease to live with and does take some serious thinking. lol gail

yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 7/10/2008 4:22 PM (GMT -7)   
SBFT is a small bowel follow through. you drink barium and have a series of xrays to see the barium go through the small intestine.
if you are feeling good, that is good! don't worry about not wanting to be on meds; really, we all go though that. it is ok to be skeptical of the whole thing. you will get answers in time as to what to do next.
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 7/10/2008 5:14 PM (GMT -7)   
Just wanted to welcome you to the site! I found it some months ago and it has been a lifesaver for me. Not feeling like I am crazy or completely alone is so reassuring plus the info is always here or someone can help you find it if not. It has also helped my husband .. there are times when he can't understand what I am going through and coming here let's him get a better understanding :)

I am currently almost 31 weeks pregnant with my second daughter and I take remicade as a maintenance drug every 8 weeks. I had been sick for years on and off with what was always diagnosed as "female issues" because they were in the lower right quad. When I got pregnant with my daughter in 2005 I got VERY SICK!!! The drs had no idea what was wrong with me and it was a horrible pregnancy...I thought she was going to die if she even made it until delivery -- some days I was in so much pain I thought I would die. I would never wish that on anyone!! I had my first bowel resection in July 07 because after 10 years with no treatment, the scar tissue had created a stricture and no meds could reverse that. Remicade, which is a very strong drug in terms of what's out there, worked miracles for keeping my disease under control. Without the drug, having another baby wouldn't have been an option for us.

My suggestion is to listen to your dr, ask lots of questions so that you always understand what is going on, if you feel you need another opinion... get one. Everyone is affected differently by Crohn's and everyone responds differently to the medications so you have to keep an open mind in those aspects.
GOODLUCK!!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 7/10/2008 5:56 PM (GMT -7)   
I understand your doctor wanting to see what condition your colon is but it seems to me that 3 colonoscopies in less than 6 months sure seems excessive by any stretch of the imagination. Plus there is no doubt in my mind that the prep and the scope itself do NOTHING to keep the colon happy. That prep is not at all friendly to the gut and the scope nosing around in there can't be making the poor ole colon any too happy either. Were the previous two scopes done by this same gastro? It is a little more understandable if this will only be the first he's done, maybe even the second, but for him to need a third???

And what is meant by lateral colon? Lateral = side, but dang there's TWO sides, the left which is the descending colon and the right which is the ascending colon. I'm taking a guess he probably means the ascending colon on the right only because the most common, but by no means the only, area for Crohn's to first "strike" is at the terminal ileum's ileocecal valve which is located at the back of the cecum which is the first part of the ascending colon. The appendix runs off the bottom of the cecum to help you w/location.

On the other hand, he seems to be counting on this colonoscopy to help him determine what your treatment options are now and he is justified in wanting and hoping to get you off the Entocort. As an old "pro" at living w/Crohn's disease (33 years) I'd have to have a few more questions answered before agreeing to yet another scope. For instance, is your Crohn's in a location wherein inflammation could be detected by a nuclear White Blood Cell Scan (it used to be the Ceretec WBC scan, but I now sometimes see Indium WBC scan)? I wouldn't necessarily let the "miseries" of a prep and scope stop me from agreeing to this third scope - BUT - he would have to convince ME that "I" had something REAL to gain from enduring it and its consequences.

As for not wanting to take any meds. Who does? BUT - it really is the only real viable option. Unmedicated, untreated Crohn's is NOT a wise decision for the VAST MAJORITY of crohnies! And, frankly, the immune modulators like Imuran or 6MP are good choices for those not ready to jump onto the new "step down" theory of IBD treatment. Their greatest drawback is that they take so long to "kick-in" and do their job. I know that Pentasa is not particularly favored by the IBD specialists now but there are many of us who DO respond well to it. Especially those of us w/"mild" Crohn's.

I think you'd do well to request some extra time w/this gastro for your next appointment to learn MORE about YOUR Crohn's disease. Where it is, how many areas it was found in, how bad that or those areas were, what your options are, what tests there are besides the colonoscopy to monitor your disease activity, what if anytning besides inflammation was found, etc., etc. Were you given still pictures of the disease area(s) from your prior scopes? Why not if you weren't?

You really do need to be more familiar w/your particular Crohn's disease and your options before you can make any really informed decisions. But wrap your mind around the fact that medication is your BEST chance at attaining and maintaining remission of disease activity.

Good luck and God bless!!!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 7/10/2008 6:34 PM (GMT -7)   
CrohnieToo said...
I think you'd do well to request some extra time w/this gastro for your next appointment to learn MORE about YOUR Crohn's disease. Where it is, how many areas it was found in, how bad that or those areas were, what your options are, what tests there are besides the colonoscopy to monitor your disease activity, what if anytning besides inflammation was found, etc., etc. Were you given still pictures of the disease area(s) from your prior scopes? Why not if you weren't?
and while you are at it, I would recommend getting print copies of all reports, blood tests, etc. it is helpful to be able to read it yourself and follow your own progress.

SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 7/10/2008 7:33 PM (GMT -7)   
Hi and welcome to HW. I just wanted to add that I too suffer really badly with the prep and recovery when having a colonoscopy, the last time I discussed this with Gastro and she suggested a saline? drip (cant remember what it was am pressuming) for after the procedure which helped with replacing all the fluid I had lost and left none of the lethargy I use to experience.
Check with your Gastro if there is something like this that can be done for you. Good luck and take care, Joanne

Jen77
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Date Joined Mar 2006
Total Posts : 2691
   Posted 7/10/2008 8:08 PM (GMT -7)   
I gotta agree with everything CrohnieToo said! Three scopes in 6 months does seem like a lot. I don't agree to another scope very easily. I don't do well with the prep (throw it up, get really weak, terrible headache from not eating), nor do I really believe the scope itself is great for colon. Not to mention I woke up during my last scope, and can remember being in a lot of pain. That experience hasn't made me want another, it's only been 2 years for me since my last one. My old GI liked to recommend them "just for a look see". Because he was very wishy washy, and seemed like he just wanted to double check everything by looking again. I'm all for it if it's really needed, but they have to convince me as well that it is. Having a look see isn't good enough reason for me. It really has to be needed for my treatment.

Also agree about the meds. I wouldn't be without some kind of maintence medication. I tried going off of the Asacol once, and my symptoms returned. It's not something I play around with anymore. Being on medications for life does stink. But it's much worse spending life very ill I've found!


~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 5 mg *eek*, Asacol, Questran, Toprol XL (for high blood pressure).


Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 7/10/2008 8:10 PM (GMT -7)   
What about a capsule endoscopy? It can't do biopsies but if the doctor just wants visuals of the area, there shouldn't need to be any prep except nothing by mouth after midnight and maybe a liquid diet the day before. Still easier than a colonoscopy.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


gumby44
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Date Joined Nov 2007
Total Posts : 4101
   Posted 7/10/2008 8:11 PM (GMT -7)   
I also have a very hard time recovering from the colonoscopies...it has taken me at least a month to get back on track. I think a second opinion from another GI may be helpful to tell if it is really needed.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation


seconder
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Date Joined Jun 2008
Total Posts : 610
   Posted 7/10/2008 8:18 PM (GMT -7)   

Crohnietoo's advice is sound. 

It's really nothing off the doc's back to order up another colonoscopy.  They really don't see them as a big deal, but they don't have to do the prep or recovery.  You should certainly be aware of your treatment options and your disease, but colonoscopies for the sake of colonoscopies is rough going.

 I always ask my doctor, "Is this to satisfy your curiosty or is it medically necessary?"  (And then I make them tell me why it's medically necessary.)


NewToCD
Regular Member


Date Joined Jul 2008
Total Posts : 57
   Posted 7/11/2008 7:34 AM (GMT -7)   
Yoga - i did have the SBFT - i think it is equivalent to the CT (drank a ton of barium & had the x-rays) & it showed no inflammation so that was a good in that it seems only my large colon is diseased

as for the 3 colonsocopies the first back in feb was with a different doctor, it was more of an emergency one in that i was really sick at the time & did not do the prep at all. The first dr it assumed it was an infection & put me on a 14 day cycle of flagyl & started me on asacol - the Flagyl really helped & got me back to beong able to function again

The 2nd colonscopy was with my new GI about 2-3 weeks ago, which was understandable as it was for diagnostic purposes, ,i was expecting that one. Now it seems he wants to do another one to see if the condition has changed/improved (so it will be about 7 weeks between the two). I do understand what his thought process is & why he wants to go back in, I just wish there was another option

CrohnieToo - thanks for all the info - i think my big problem is that i dont really know what the right questions are to ask & you gave me a great place to start!

I found a GI doc who specializes in Chrons & was in NY Mag best doctors this year, so i am considering calling & making an appointment before i go through with the other scope (its secheduled for the beginning of Aug, so i have a little time to play with) I know i will have to get all my records & i knows its ridiculous, but i always feel weird about stepping on there toes or insulting the drs. I know so stupid!

Chasity - Good luck with the preganancy!

Thanks again for all the thoughts & advice!

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/11/2008 10:30 AM (GMT -7)   
Duh! Zanne is right on!!! I'd just tell this gastro, I won't do another scope this soon, if you want to do the Capsule Endoscopy I'm agreeable. The nuclear WBC scan, I'm agreeable. I am NOT doing another prep and scope this soon just for a "look-see". The SBFT just is NOT accurate enough to consider so I can understand his not recommending that. I'd also ask about the fecal calprotectin test for monitoring of your disease activity every so often for the in-between times. But for now, the CE sounds like the absolutely best advice. Thanks, Zanne!!

PS if there were indiations of partial obstruction your 2nd scope you can insist on the Agile Patency Capsule before the CE.

BECAUSE we KNEW I had a partial obstruction at my old resection site when my gastro suggested the CE I was all for it 'cause I wanted to see too!!! BUT - I refused to do the CE UNTIL we did the APC first. Good thing I did. I didn't pass the APC. It dissolved and 4 days later I passed what was left of it (just that little rod). I know because I screened my BMs until I found the rod. (Hey! Don't get so icky, ugh! I spent 30 years scooping dog poop, collecting stool samples, mucking horse stalls, etc. plus raised 4 kids and their dirty diapers. The dirty diapers were the worst!).
 
The gastro in NY sounds like a good idea. I'd be inclined to go for it. You certainly have a right to a second opinion and a good doctor wouldn't feel threatened by your wanting a second opinion if presented that way. Especially if he is unsure, and the second opinion sought is w/an IBD specialist. My gastro isn't threatened by my trips to Mayo and in fact welcomes their reports.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 7/11/2008 11:34:35 AM (GMT-6)


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 7/11/2008 11:01 AM (GMT -7)   
SBFT are useless for me. The radiologist who did mine said that my intestines loop around so much that they can't even see my TI with that test. So he told me it was a waste of time, and I'd be better off with a CT-scan even. My old GI called me with the results and just said "Everything looked good". Um no, they couldn't see anything to even say that!

I've also had a barium enema and they never saw anything with that either. So I think, for me anyway, those are a waste of time.
 
My primary doctor looks at my blood work to tell where my Crohn's is at for the most part, that and how I'm feeling. I'm not going to agree to scopes just for look sees! Too awful to go through for that!


~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 5 mg *eek*, Asacol, Questran, Toprol XL (for high blood pressure).

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