Crohn's Disease Forum » General IBD Discussion » Sudden shift in symptoms, GI 6+ month waiting list, don't want to be drama queen

09-18-2017, 04:51 AM   #1
Join Date: Sep 2017
Location: Ellesmere port, United Kingdom
Sudden shift in symptoms, GI 6+ month waiting list, don't want to be drama queen

Hi there

Please bear with me, it'll help to know the whole story...

I was dx with Crohn's in 2008 after suffering D, pain & night sweats. Was hospitalised for 10 days & since then I've had pretty much no bother (or so I thought).

I suffer with mental health problems & the diagnosis sent me straight into denial, I've seen one GI in all the time since.
Last time I went, 4 years ago, I was told I had a stricture & that treatment was needed to 'prevent something disastrous' in the future. However, the side effects scared me to the point where I hid away & straight back into denial.

Fast forward 2 years...
2 years ago, after an emergency c-section, I started getting strange symptoms that seemed unrelated to Crohn's & was back & forward to the docs & had many tests.
I have had joint pain & fatigue (a lot has cleared up since taking Vitamin D, which was almost depleted at time of testing).
I've had:
tight achilles
purpura on my legs (worse after alcohol)
weak legs
burning hands & feet
Pain near tailbone & feeling like I'm sitting on a ball
Painful sex occasionally
Suspected stomach ulcer
Dysphagia (moving food into my throat)
... as well as loads of other strange little things. Last tests came back with high esr & ANA Positive 160 speckled titler so was sent to rheumatology with suspected autoimmune (aside from Crohn's) and I genuinely never once considered Crohn's. CT scan showed stricture has worsened. Awaiting results of MRI.

At the rheumatology appointment I was told she could feel the tightness in my achilles & this was typical of enthesitis which occurs along side crohns.

Now, ever since walking away from that appointment 3.5 weeks ago I've had a sudden increase in symptoms & also a huge shift...
My achilles is HUGE, it's not agony but it's certainly aggravating. I also feel like someone has wrapped a blanket round my calf of the same leg. This has stayed constant throughout. For 2 of these weeks I had pain in a different place every day - under left rib, then upper back to shoulder to neck to lower back, wrist etc. The last week the joint pain has subsided.
The main thing which has occurred in this time is a complete shift in bowel habits: I used to go to the toilet around 5-10 times a day, mostly diarrhea but sometimes slightly more formed. Now I can barely go - whenever I eat I can feel it all backing up & altho I need the toilet, I just can't go. It's like there's a block near my rectum. I feel massively uncomfortable all day & frequently sit on the toilet to try to get something to happen but the most I can get out is malteser size, if any.
I CAN go in the morning tho, I wake up & after 10-15 minutes I need to empty & then the whole cycle starts again.
I bloat massively after eating & previous loud sounds that used to run down my left side have now pretty much ceased.
Last night I could actually feel my bowels moving under my skin just right of my navel, it was sporadically going tight, almost like a baby is in there.
Last week I also had some soreness around my anus, but only when applying pressure (took my breath away) - it felt slightly different to touch too. This has now subsided.

The really interesting thing is pain, I rarely get it! Even when my inflammatory markers are high & with the stricture worsening.
I suspected this to be a flare but aside from bloating & joint pain I have very little pain. I've been ever so slightly crampy (needed water bottle), some niggles along my left side & a little back pain (not joint tho) but that's as bad as it gets. My mum, uncle & nan have Crohn's & the pain they experience is crazy compared to me.

Its a 6+ month waiting list to see a GI. I've done a lot of research & realise I've been pretty stupid and insanely ignorant. I'm not here to be judged, I do a good job of that on my own.

I'm here to ask what could be going on?
So I'm not completely constipated as I can go to the toilet every morning but my body, every day, feels like I've not been to the toilet in weeks.
Also pain, is it likely that my Crohn's is actually really mild & I have IBS causing problems or another autoimmune?

I'm not sure where to go from here with having such a long waiting list :/

Thank you for reading xxxx
09-18-2017, 05:21 AM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. I am not sure what is going on but I wonder about a blockage. I hope the gi can give you sime answers soon. Please let us know. Also, can you call the doctor's office and ask if there are any cancellations if they could pencil you in sooner?
09-28-2017, 12:07 AM   #3
Join Date: Sep 2017
Location: USA

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Ask to be put on their waiting list. Most specialists have one where they can see you sooner if there's a cancellation.

It's no use to compare your health issues to someone else's. My mom has to take much stronger medications for her arthritis than I do due to having more pain, but I have what appears to be a more progressive form of arthritis (considering I have a major visible physical deformity by age 27). If I had went by pain or symptoms alone, I never would have been diagnosed.
09-28-2017, 06:36 AM   #4
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jojo82,How are you now?
09-28-2017, 10:52 AM   #5
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Jabee's Avatar
Join Date: Oct 2016
Location: Massachusetts

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You could try a liquid diet including nutritional shakes like Ensure, Ensure plus, Fortisips, etc. When I have an increase in symptoms like yours I immediately go to liquids which helps a bit.

Crohn's Disease Forum » General IBD Discussion » Sudden shift in symptoms, GI 6+ month waiting list, don't want to be drama queen
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