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Crohn's Disease Forum » Support Forum » Need some advice on getting back out there!


06-25-2017, 08:18 AM   #1
ga643
 
Join Date: Mar 2017
Need some advice on getting back out there!

Hi All,

Im hoping for a bit of advice from people in the same position as me if anyone can help out that would be great!
I have Crohn's and colitis but Im doing pretty well at the moment Ive had a lot of problems and pain over the last few years which seems to be calming down a bit which is obviously quite a relief. My consultant says that I am pretty much clear of any inflammation in my bowel right now but im still having problems with urgency and never having a solid movement. I still get the problem where my body just keeps trying to go to the toilet even though I have just been! Is it worth considering anything else or speaking with my consultant, he seems to not be very interested now that all the paperwork says im doing fine (have been downgraded to phonecall appointments with the nurse every 3 months)

I also still have problems dealing with this mentally, if i have to go out anywhere my body has to go to the toilet about 5 times before i leave i think this is more of a mental thing perhaps? Im also really concerned about needing the toilet when im out and about. Does anyone have any strategy for dealing with this side of things, id really like to go back to work and get some friends again but this Crohn's stuff makes it really difficult!
06-25-2017, 12:17 PM   #2
ronroush7
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Maybe you should get a second opinion.
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06-25-2017, 02:13 PM   #3
Crispix73
 
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I agree about getting a second opinion. You're still experiencing symptoms that are effecting your daily life. I'd want more answers or possible solutions than you're getting. Is this someone who specializes in IBD? My previous doctor didn't see IBD all that often and, while he was a nice guy, didn't offer the most effective treatments.
06-26-2017, 01:58 AM   #4
Susan2
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The mind plays tricks on us sometimes and perhaps, because you are hesitant about going out, your mind is giving your body an excuse not to go - does that make sense? You might need to try some form of positive reinforcement or even a properly qualified clinical hypnotherapist.
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06-26-2017, 01:50 PM   #5
ga643
 
Join Date: Mar 2017
Thanks for the replies!

My Gastroenterologist is quite good he seems to be quite good, he is the one who diagnosed my Crohn's and colitis Im not sure what a second opinion would do, do you think there maybe yet another condition? I was just curious to see how others on here felt when they were told that they were technically in remission (not exact words i was told that there was no longer any sign of inflammation in my bowel, presumably from the Calprotectin test) and whether they still had problems with needing the toilet urgently. It wasn't really explained to me that problems would remain even if the condition was managed and I still pass acidic soft stool just not as many times a day.

In regards to the hypnotherapy I tried that a few years ago before i was diagnosed it didn't seem to help much, do a lot of people have success with it?
06-26-2017, 02:00 PM   #6
ronroush7
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I could be wrong but I am not sure if you are going at least five times that the disease is under control. Also, if you are having anxiety about the disease you may need to talk to someone professionally.

06-26-2017, 02:13 PM   #7
Crispix73
 
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Thanks for the replies!

My Gastroenterologist is quite good he seems to be quite good, he is the one who diagnosed my Crohn's and colitis Im not sure what a second opinion would do, do you think there maybe yet another condition? I was just curious to see how others on here felt when they were told that they were technically in remission (not exact words i was told that there was no longer any sign of inflammation in my bowel, presumably from the Calprotectin test) and whether they still had problems with needing the toilet urgently. It wasn't really explained to me that problems would remain even if the condition was managed and I still pass acidic soft stool just not as many times a day.

In regards to the hypnotherapy I tried that a few years ago before i was diagnosed it didn't seem to help much, do a lot of people have success with it?
As an example, right now I have no pain, and only the occasional urgency. I have anywhere from 2-5 bowel movements a day. If I take Metamucil they're mostly solid, but if I forget to take it, they tend to be much looser. I do not consider this remission. When I spoke to my new GI doctor this morning, she did not consider this remission.

Have you had a scope recently? Or is your doctor basing your remission solely on calprotectin test?

I would talk to your doctor. Anytime I have had the urges to go to the bathroom and nothing comes out, it ends up being inflammation.

Hope you start to feel better soon!
06-26-2017, 02:32 PM   #8
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
Have you had any surgery? Have you been tested for bile salt malabsorption? That can cause loose stools & wont show up on a FC test. You'd need a Sechat scan to confirm that. I have CD & BSM & I don't often leave the house for the exact same reasons you mentioned. It has affected me mentally & im sure that doesn't help matters. It's just that fear of "needing to go" & not being near a loo!
I hate this disease so much, I hope they get you sorted as sounds to me like something's still going on...
07-19-2017, 06:12 AM   #9
ga643
 
Join Date: Mar 2017
Thanks for the replies again sorry I haven't checked in for a bit!

In regards to professional help I have had that before it didn't really help much they seemed pursue the line of thinking that I was exaggerating my symptoms (I was basically told I could think it away until I use the analogy that she couldn't 'think' the cold away that she had in one of our sessions after that things didn't really progress!) Is there a field of psychology/therapists that specialise in this sort of thing?

At the moment my GI is going solely off the calprotectin (and blood test?) results and says there is no sign of any inflammation in my body currently. Thankfully I have not had any surgery no and my last scope was probably around 2 years ago now. Quality of life is pretty low right now I have a lot of pain elsewhere which painkillers do not work for and the constant barrage of 'you need to be normal and get a job' or 'you just sit in your room all day' really doesn't help things (especially since it has hurt to walk lately but thankfully that looks like it is calming down now)

Is it worth mentioning the bile salts test? My GI seems pretty reluctant to do more tests and is not really interested in other conditions which I am sure were brought on by the medication i have been taking but is difficult to say for certain.

Thanks again for the replies, much appreciated.
07-19-2017, 06:25 AM   #10
ronroush7
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You know your body better than anyone else.

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