Can't get away from the Concern.

[AcrossthePond]

Hello,

 

I should start off by saying that I have not been diagnosed with PC, but I have been on the path of trying figure out what is wrong with me for quite awhile and keep seeing references to PC and that keeps me up at night.  I have spent a good amount of time on the forums and have seen quite a few instances of others who have been in the same space and the advice given by others has been very helpful.  I have hesitated to write this as I don't like to take valuable time from others, but my anxiety is overwhelming and this space has been one of the few I have found helpful. 

 

I am a 39 year old male who started having issues in December 2022.  The first thing that happened was some very strange digestive issues.  I had very urgent loose bowel movements that were more mucous than anything else and terrible smelling gas, and a lot of it. The color of my stool was anywhere from normal to yellow-brown with a lot of mucous.  I also noticed my urine was rather dark in the mornings (The abnormally dark urine only lasted a short time).  These symptoms were intermittent so I assumed they were associated with a stomach bug.  In Jan 2023 I noticed that I was having a minor discomfort in my upper right back, below my right shoulder blade but more towards my spine, but it wasn't really a pain and was not constant, but certainly more noticeable when I am sleeping.  I will often wake up to have to readjust, it just feels like I have a minor cramp that I cannot work out.  I had an physical in Feb 2023 and mentioned this to my provider and he wanted to run standard blood work with some tests for pancreas enzymes.  Everything came back within normal ranges (with the exception of my bilirubin levels which are always slightly elevated -- I have Gilberts syndrome and no gall bladder), but I was referred to a GI specialist as the stool issues were persisting.  

 

The GI specialist ran some standard bloodwork (all normal) and recommended a colonoscopy. She indicated it sounded like there may be some steatorrhea and it could be caused by bile acid diarrhea  and/or IBS. She recommended adding fiber to my diet as well.  I should mention that by now my bowel movements started to follow a very standard cycle.  I would have a semi normal bowel movement first thing in the morning, followed by 2-3 very urgent, mucous filled slimy movements shortly after.  The mucous would vary in color from yellow to brown and would both float and sink at first, but generally sink to the bottom.  I also noticed a very strong yellow hue in the water when I would have these.   In April 2023 the discomfort in my back started to become more noticeable and I went back to my provider.  He ran more bloodwork (all normal) and sent me for an ultrasound.  The ultrasound came back normal but indicated the pancreas may have been not entirely visible.  I tried to take the reassurance here and move on, but the digestive issues and the back discomfort persisted.  In Sep 2023 I started noticing I was drinking a lot of water and urinating frequently.  So I checked my blood sugar and my fasting blood sugar was a bit higher than normal (97-104), still usually within normal ranges but higher than what I usually see (I am fairly fit and my historic ranges are usually in the 80s).  So I went back to my provider and he ran another round of blood work and I asked him to run a CA-19-9 test as I had started to become concerned with my pancreas.  Everything came back normal and the CA-19-9 was 4.2 U/mL (almost low).  Again, I tried to move on and take reassurance. The loose stools and back discomfort persisted and in I went back to my provider in Dec 2023 because something still did not feel right.  He ordered a fecal-elastase test and sent me for a CT with contrast.  Fecal test came back normal and CT scan showed no abnormalities.   Again, I tried to move on.  The symptoms persisted and the back discomfort has become even more noticeable (especially when I am sleeping and still in the same spot) and I went back in Jan 2024.  More normal bloodwork with the exception of my lymphocytes relative which were low and have been trending down for the last year, but he said he wasn't concerned. After describing the stools to him which by now seemed to have a bit of oil sheen on the surface of the water when I look at with a light, he indicated that it may be bile acid diarrhea as well and prescribed me a binder to help. The binder immediately stopped the strange bowel movements, he told me to follow up with my GI to try to determine the cause of this.  Since being on them for a short time I will intermittently get the old stools, but it has helped.  He said it could be my lack of a gallbladder, but I haven't had that since 2005 so it was still worth investigating as it changed recently.  

 

And here I am.  I have a colonoscopy scheduled for next week and a due for my next annual physical the week after.  Still feel like I am in the same space I was this time last year with no real answers.  The doctors I am seeing don't even consider something like PC and having to go through this history with them is almost impossible as they tend to just read the reason I am there that specific time and look at that.  I have tried to stop talking about this with my wife to not drag her into my persistent anxiety with this, but she can often tell something is bothering me.   It just seems like I am in a state of constantly waiting for a shoe to drop behind me.  I have tried to stay away from Google as much as possible, but knowing something is "off" with you and not knowing why and having this seed planted in the back of your mind is excruciating.  

 

Aside from the persistent back discomfort in the same spot (but has become more pronounced) and the same cycle of strange bowel movements (which have been stopped with a bile acid binder) nothing else has changed for me.  I generally feel ok, haven't lost any weight, and no other symptoms have started but I just can't shake this fear.  I have spent a lot of time looking at forums and tried to take reassurance from what others have said, but still the anxiety persists.  As I have used this resource a lot I wanted to share as well. 

 

 

[Thesea]

How are you AcrossthePond?  I've read your post a few times, it's hard to know how to reply.  This level of anxiety must be really difficult for you.  

I just keep thinking that the lack of a gallbladder surely means that you are likely to have digestive issues from time to time.

 

But your anxiety is real, that's for sure.  I guess it must be hard to think of what to say to doctors when you're already beating yourself up to some degree but don't let that hold you back.  As PC can be hard to diagnose you have, IMO, the right to say that it is a big fear of yours and to urge them to do everything they can to exclude this possibility on the grounds that the (very slight?) chance that you have it cannot be ignored.  But also on the grounds that thorough tests followed by reassuring news might help the anxiety considerably.  I suppose I'm saying that medics must be used to patients' anxiety or at least they should take it seriously as it can be crippling.  Sounds like your wife understands.  Have you involved her in planning exactly what you will say next time you have an appointment?  Attending appointments with someone who has got your back and can remind you to push forward with all the questions you've planned to ask is a good idea I reckon.

 

 

[AcrossthePond]

On 2/5/2024 at 4:18 AM, Thesea said:

How are you AcrossthePond?  I've read your post a few times, it's hard to know how to reply.  This level of anxiety must be really difficult for you.  

I just keep thinking that the lack of a gallbladder surely means that you are likely to have digestive issues from time to time.

 

But your anxiety is real, that's for sure.  I guess it must be hard to think of what to say to doctors when you're already beating yourself up to some degree but don't let that hold you back.  As PC can be hard to diagnose you have, IMO, the right to say that it is a big fear of yours and to urge them to do everything they can to exclude this possibility on the grounds that the (very slight?) chance that you have it cannot be ignored.  But also on the grounds that thorough tests followed by reassuring news might help the anxiety considerably.  I suppose I'm saying that medics must be used to patients' anxiety or at least they should take it seriously as it can be crippling.  Sounds like your wife understands.  Have you involved her in planning exactly what you will say next time you have an appointment?  Attending appointments with someone who has got your back and can remind you to push forward with all the questions you've planned to ask is a good idea I reckon.

 

 

Thanks for the reply.  I had a colonoscopy last week and everything was normal.  I also have my annual physical this week and my provider ordered a round of bloodwork that I will go for tomorrow.   The lack of a gallbladder is an easy thing to point to (and it could be), but it is strange that my physical symptoms really came on strong in Nov/Dec 22 and I haven't had a gallbladder since 2005. 

 

I will say that my primary care doctor has generally been very accommodating to all my requests.  I have expressed my concern to him and while he doesn't think that is my issue, he will run almost any test I ask (blood work, ultrasound, CT scan, fecal tests).  I asked that he include pancreas function tests with my bloodwork and another CA19-9 test and he has ordered it.  

 

The anxiety comes from knowing that something is not right, but not being able to figure it out.  I am fairly in tune with my body and something is "off" and I can point to very specific things (bowel movements and back discomfort) that have manifested since this has started.   

 

My wife has been very helpful and she is also in the medical world (pharmacist), so she takes the approach of "the doctors are doing everything they can do to investigate" and at some point you need to take what they are telling you.   I have seen this advice given many times from others on this board and I am trying to take that advice to heart.   

 

I try to console myself by telling myself that the experts (my doctor and my GI specialist) are not concerned, that my doctors have searched much further and deeper (at my request) than they thought necessary, that no real abnormalities have shown up in quantitative testing, no abnormalities have shown up in scans, and that this has been ongoing for 15 months and something that serious would have become apparent by now.  But once this seed is planted it just does not seem to go away and it is tough. 

 

Again - I appreciate your response. 

[IMissYouDad]

Hi AcrossthePond

 

I hope you're feeling less anxious and have had further reassurance that you're well. 

 

Your health anxiety must be crippling and I'm currently going through something similar - the total opposite of PC but the anxiety is always there, bubbling under the surface. The crazy thing is, I only developed this level of anxiety since my dad passed from PC.. it was a horrible, horrible time. 

 

Anyway, I hope you're feeling much calmer now.

 

Take care.

[Janecav]

Anxiety and worry are the most awful feelings.I have lost confidence since losing my Husband from PC and I find myself more anxious and hesitant over lots of things too.

No specific advice, just to say I get where you are both coming from and share your feelings.