Another Colonoscopy????

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!

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

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!!

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.

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!!!

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

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.

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.)

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.