Bizarre new symptoms & an update

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Kev

Senior Member
Joined
Jun 30, 2006
Messages
5,010
Location
Halifax, NS, Canada
Hi all.. I've been going downhill slowly but surely since the end of November past. I have no explanation for this downward trend. I'm on 4 grams of Salofalk, still on the same regimen of diet, meds, exercise, supplements and added calcium/enzyme
treatment. In short, nothing has changed except suddenly it all seems to have stopped working. In the past I've experienced sudden onset downturns or flares that lasted 1 - 3 days, were extremely bad, then just as quickly went away. Those would typically knock me back 2 or 3 weeks in my slow but gradual recovery. This latest is different. Not severe, just slow. Despite going to the hospital, having a two week round of nightly Cortifoam 10% 15 g (Hydrocortisone Acetate USP Rectal Aerosol)
added to my meds, I continue to go downhill just a little more each passing day. Now I've got inflammation (area is hot to the touch and swollen/very painfull) in my neck. Left side, starting just behind the ear and moving down to collarbone. I think I've got infection or inflammation in one or more of the glands in this area. Now, my question is has anyone else ever had anything remotely like this occur to them??? The reason I ask is that I'm due back at the hospital on Tues morning. I will fill them in on the total lack of success of the cortifoam (to think I just blew $100 up my ass and all it did was increase my pain without aiding my symptoms). I am pretty sure the next step will be Prednisone. But, when I tell them of my neck pains, it sure would help in advance IF I knew that others had these pains too.. Otherwise, it might be that I do have a totally unrelated infection of one or other of my neck glands, and that the 4 grams of Salofalk are masking the other symptoms... Did anyone ever experience that? Your anti-inflammatories masking the typical symptoms of a routine illness/infection? Like. a cold or flu is not as bad as normal cause your IBD/crohns meds were mollifying the pre IBD/Crohns effects
OR, has anyone any words of caution of starting on pred IF another infection of some sort or the other is already underway? Any thoughts would be welcome...
 
Where exactly on your neck is it, I know you said that it is along your neck. Is their an exact spot. Check your lymph nodes, they are about halfway down your neck if you don't know, are they enlarged. What else are you feeling. Check your entire body for more hot spots. Best of luck man.
 
I'm sorry, I've never had symptoms like this so I am no help at all, just wanted to wish you the best when you see the doc.


Ruth
 
I haven't experienced those symptoms Kev.
I would sure tell them about it tomorrow when you go and have it checked out.
I have found that my anti-inflammatory meds do indeed mask other infections.

Hey....let us know how you make out!
I know your positive thinking will help greatly! :)

Hugs~Nancy
 
HI,

I am new here. I am currently going through a flare and part of this is the horrible arthritis that I tend to get. The last week or so I have had the most horrible neck pains like yours. It hurts just behind my ear and down my neck. I am going to the doctor tomorrow. Hopefully they can tell me it this is related to my Crohn's. I think that it must be. Have you found out about your neck pain?

Leigh
 
Hi Leigh..I'm sure Kev will appreciate the info.
Welcome to the forum...please tell us more of your story
and I do hope you get over this flare soon!

Healing hugs~Nancy
 
Thanks to all who wrote.. Here is the update after spending a couple of hours at the hospital... Very thorough exam today.. approx 1 1/2 hours being poked and prodded.. Not complaining, appreciate the time they spent on me, just that a lot of the poking/prodding was pretty darned uncomfortable.. Anyway, looks as if my neck pain was from lymph gland involvement.. also looks like my liver is involved.. noticable enlargement of the liver.. will know more when they get the results of the extra bloodwork, etc., that they did today.. I've lost about 3 pounds in the last 2 weeks.. Anyway, long story short, I'm starting on prednisone at long last.. Been trying to avoid going that route by strictly sticking to my diet/meds regimen. So much for being a 'good' boy. Hate that this darned disease doesn't play fair.. We're trying a moderate approach on the pred for the next two weeks, but that may change.. I've been advised that if the moderate (20 mg) approach doesn't do the trick, then we'll likely double that dosage in my follow up in 2 weeks time.
Unfortunately, the lymph gland involvement is not a 'confirmed' diagnosis, as the swelling/pain/inflamation in my neck just completely disappeared overnite. Figures.
I didn't mention lymph glands as the possible/probable culprit, that's their 'best' guess at the moment. My bloodwork from my last visit confirmed that my markers were up... they're repeating those plus others.. But my red count is pretty good.

Anyway, thanks again for the kind thoughts and words of encouragement. Anyone with anything to add is more than welcome.. And, speaking of associated pains... my hands went out on me yesterday (again w/o warning) so I couldn't go online.. Hate to use the term 'pins & needles', cause most people associate it with a hand or foot falling asleep.. It's not like that at all. It's not like pins/needles
are sticking into my fingers, etc.. from the outside.. More like their inside me, and burning hot, and the pain increases as I move them or try to touch anything. Last nite I req'd assistance opening my pills, opening some yogurt, turing on lites, etc..
And as for 'athritis' pain, have had that from time to time (even before diagnosed) but yesterday, my right leg, from instep to hip, felt like it was fully arthritic. Was hardly able to walk/stand on it, couldn't drive my 5 speed, limped like I was 90.. I dunno how/why, etc., but it just went away all on it's own. Pretty unpredictable.. I just wanted to put all of this info down here (out there) in case anyone else is/has these symptoms AND might be assuming they're from taking prednisone (or other meds).. I've got them, and I haven't taken any prednisone so far. Okay?
 
Hi Kev, good to hear you,ve been taken care of. Keep us posted on those bloods.

Ruth
 
Hey all.. Sort of had a bit of an 'eureka' here. Ran into that same bizarrre symptom again the other day, except this time instead of that burning pins & needles feeling in my fingers, it was in my toes (of all of the locations, for whatever reason it hurts my toes the most).. I've never been comfortable describing that bizarre pain using the term 'pins & needles' , mostly because I think it confuses people who've never felt it. Sounds more like the sensation of an appendage falling asleep, which it definitely is not like at all. Then, for whatever reason, I had sort of a mental flashback during the latest episode. Maybe it was because it was in my toes this time, or maybe the recent cold spell here triggered my memory. If you've never lived or visited a cold climate, or never saw the movie 'Titanic', then my poor description of this bizarre symptom will probably be lost on you forever. However, anyone who has, as a child or senseless adult, ever let their hands/feet get so cold they nearly got frostbite, OR paid attention as Leonardo DiCaprio tells Kate Winslet what it feels like to jump into freezing water in the movie "Titanic", may get the real drift of what this bizarre symptom actually feels like. Just that. It feels like the early warning signs of mild frostbite, or severe chillblains. A cold that is so cold it actually feels like it is burning.. that there are needles of pain inside of your flesh. Eureka. That is the sensation. I think more people can relate to this description, even if you've never experienced it as part of your IBD experience. OK

Now, whether this is part of IBD, or a symptom of an, as of yet, undiagnosed other illness, I don't know. I just know that I get it, fairly commonly, without warning, & without any recourse or treatment that alleviates it in any way, shape or form. It just starts, lasts as long as it lasts, has apparently no trigger or treatment I know, then it goes away. So, I throw this out to you, anyone else ever had this happen?
 
I have never heard of this symptom Kev,
yet living up here in the cold north, the way you decribed it today.
I most certainly can and do relate to the cold cold toes in the winter.

I know the feeling and it's not quite pins and needles.
Thanks for clearing that up, but I'm sorry I can't help you with what's causing this symptom.

Nancy
 
OK I'm going to throw this out there.. It's strictly anecdotal (means I've no research or demonstrated scientific principles to back it up with, just my own experiences).. I've noticed something peculiar.. the pins and needles issue has settled down for me recently. I assumed it was because I'd started taking Prednisone. However, Sunday is laundry day at this ol fart's house.. and thankfully, there's a 1/2 bathroom just off the laundry room. It isn't frequently used in the winter, as the area isn't insulated & I live in Canada. Can you say 'Brrrrr'? I knew you could. Ok, my point? I recently ran out of the anti bacteria liquid handsoap that I typically keep in the other bathrooms, and replaced it with a non anti-bacteria type (the store was out of the a-b type I normally buy). Except for the basement bathroom. Since it is rarely used, the soap there was my regular anti-bacteria type. Between handling the dirty clothes, going to this bathroom, etc. I washed my hands with the a-b type more on laundry day than I had for some time.. Odd thing is, later that nite, the old 'pins & needles' pains came back with a vengence. Coincidence? I dunno.. Still taking my pred., so if it was it that kept away the p & n pain, why did it pick that nite to stop? Wondering if the a-b type soap is connected... My rationale?? Maybe the a-b type soap depletes any of my 'good' bacteria on my hands? Is the 'bad' bacteria having a field day due to my using a-b soap? If the balance between my good bacteria and bad bacteria is out of whack, in favour of the bad (thanks to Crohn's, or the MAP virus, etc., etc..) then I may have been wiping out both with the a-b type soap, but since the bad is flourishing, just giving them fresh areas to infiltrate or populate. As I think about it I wonder if I'm onto something, or just sound like I'm on something.. Reason tells us that one of the most bacteria laden parts of the body are the hands. With this illness, the constant trips to the bathroom, the cleaning up afterwards, whatever, it may be that I was loading up on potentially bad bacteria, then my handwashing is wiping out nearly all of both the good & bad, and then any miniscule bad bugs get to flourish. Similar situation would happen to my feet, esp toes., due to habit of showering each & every nite before bed.. (If these bad bugs can penetrate the layers of the intestinal tract, maybe they can pentrate the layers of our skin too). Nothing there for them to thrive on, just reactionary pain from our immuno system response. Ok, really reaching on that, ol fellow just clutching at straws to explain why my body doesn't react in any way that makes sense to me anymore. Or is it?
 
Hi Kev - those symptoms you are complaining about sound similar to what I get only in my case my fingers then change in appearance (a white waxen look). I am told it is due to my blood vessels constricting and the blood being drawn away from the peripheries. This can be due to a hyper reaction to the cold or stress or an auto immune problem called raynauds phenomenom. My problem has been linked to my habit of overbreathing in response to pain, which sets of my autonomic nervous system (chronic hyperventillation syndrome), that and my uncontrollable anaemia, aggravated by the cold weather we have here in the UK.

At first I was like you, just the cold nippy feeling that made my fingers almost feel hot, then I would get a tight clammy feeling in my fingers, and when it was over they would turn flushed. With raynauds I think that they can turn blue as well. What I do to combat this is carry those little balls that golfers carry that heat up in your hand with me to keep my fingers warm in the winter. I also have seen myself running my fingers under the hot tap as well to heat them up too.

Can,t say it is what you, have but it will give you somewhere to start thinking about. Hope you find out soon. Take care.
 
Hello Kevin, my feet, mostly my toes do it to.No matter how warm you dress them sometimes.Mine also do not like to be uncovered, they ii's hard to explain not exactly pins and needles, but you are aware of them.I keep socks on as much as possible. I have been complaining to my doctor for over a year now about them.At first my whole feet would pain like hell then tampered off to just the toes, and as I said it's different feeling weird one. My whole body doesn't like the cold sometimes I feel like my blood has turned to ice.Soo cold.I am not on presdone or anything other than imuram, which doesn't work either. Hope you are feeling better soon, take care. Oh which hostipal to you go to? the QUE11?
~~~HUGS~~
 
get your doc to check your vitamin b levels. this is a common symptom in people who are deficient in their B vitamins from antibiotics, antifungals, or just not absorbing it well (lovely side effect of Crohn's!). Vitamin b's are not absorbed well in the intestinal tract anyways but the bacteria that live there produce it when breaking down your food. so an abundance makes up for the poor absorption.

I noticed in another post you said you used to take probiotics.. which did you take? Some brands don't do much while others are very potent.
 
Me too, but mine's cause my terminal ileum's gone. :)

It's gone gone gone, gone gone gone, cryin' won't bring it back.

Sorry, I'm not really a country music enthusiast, but that song just kinda works for everything. ;)
 

Latest posts

Back
Top