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Sudden shift in symptoms, GI 6+ month waiting list, don't want to be drama queen

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Crohn's Disease
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Posted 9/18/2017 10:17 AM (GMT 0)
Hi there smile

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)
itching
hives
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

Post Edited (jojo82) : 9/18/2017 4:35:47 AM (GMT-6)

Posted 9/18/2017 12:47 PM (GMT 0)
No, that's not IBS, knock that thought right on the head. Don't slip back into denial mode.

The sudden constipation is a cause for concern, although if there is no actual pain it is probably not a partial obstruction (yet). I know when my Crohn's got worse, paradoxically I started becoming constipated far more often - for a while I took movicol every day just to try to keep the stool soft and avoid the faecal impactions I'd had previously in my rectum. I probably had a stricture as well, but that wasn't found until a couple of years later on a CT scan. I didn't have much actual pain either - just a lot of discomfort.

Anyway, as you can see from my sig there was no happy ending. I muddled through until 2011, then a sky-high fever and abdominal pain saw me admitted into hospital for nearly 2 weeks. My GI treated it like gastroenteritis at first (god knows why, I knew it wasn't that), but when they did an abdominal x-ray they found out it was toxic megacolon - if IV steroids hadn't kicked in, I would have needed an emergency colectomy. But that was the beginning of the end. Kept on flaring up with by now unbearable abdominal pain and going back into hospital for more IV steroids. Eventually had surgery in 2013.

If surgery is not in your future, I will be suprised. Hopefully not a colectomy and stoma like what I had, but a resection at least.

Stay on the waiting list for the GI and try to get it pushed forwards if you can. Ask if there's a waiting list for short notice appointments (from cancellations). If you develop a high fever or excruciating abdominal pain, go to the emergency department. And in the meantime at a low-residue diet as well - I would say you've been fairly lucky not to have had any apparent obstructions so far. Oh yeah, I had a stricture as well and it only took a couple of partial obstructions to convince me to stay on a strictly low-residue/semi-liquid diet.

Couple of other things: the side-effects from untreated severe Crohn's are 100% guaranteed, wheareas the (serious) side-effects of meds rarely happen. And, it's possible you could have another autoimmune disease alongside the Crohn's. I've managed to pick up two: Hashimoto's (thyroid) and uveitis (eyes). But for now concentrate on the Crohn's. I would get a thryoid workup done at some point, though, if you've never had one (make sure it includes thyroid antibodies).

Oh and one more thing. Don't be afraid to ask questions or say you're not happy. If you don't stand up for yourself, the doctors won't do it. They won't go out of their way to give explanations or do additional testing unless you request them. Being passive is a great way to get substandard treatment: I know this from personal experience unfortunately.

Good luck :/
Posted 9/18/2017 8:02 PM (GMT 0)
Thank you for your thorough reply.

I have an appointment with my GP on Thursday & I'm asking for an emergency referral. I've spoken with the IBD nurse at my local hospital & she's told me to ask doc for quick referral, which takes around 4 weeks, and she'll look out for my name & bump me up.

Would this explain the pressure feeling I feel up my rectum? It's not painful at all but it's certainly uncomfortable.
Been getting minor stabby pains in my right side throughout today but only very brief & quite nondescript.

Really appreciate the advice given, thank you so much, it's truly helped x
Posted 9/19/2017 1:47 PM (GMT 0)
No problem. Hope the appointment comes through soon.

Rectal pressure is often a symptom of rectal inflammation. Tenesmus is the fancy term for the sensation of needing to go, but not being able to pass anything - or only tiny amounts - when you go to the toilet.

Back in the days when I developed impaction a few times, I could actually feel the impacted mass of hard stool in my rectum, but it wouldn't budge by a millimeter despite excruciating urges. Grim times. If you ever get to that state, try the maximum dose of Movicol or, better still, a glycerin suppository and hang out by a bathroom.
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