HealingWell
Search Close Search
☰

why do i feel this way?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted Today 9:51 AM (GMT -5)
I just don't get it. I was feeling relatively great for the last six weeks or so. about 3 weeks into starting the plaquenil and two weeks after my last remicade all of my aches went away and I felt like things were manageable. Nothing seemed to bring back the aches (lack of sleep, stress, foods) and i thought i had a solution. Now I wake of today 4 days after another dose of remicade and I feel like total junk. everything is oppressively sore sick aching. I don't get it!!! i did nothing differently!
To top it off I had planned to see my rheumy on thursday for blood work results since she wouldn't talk to me on the phone about them and i had to wait 7 weeks. I really needed to discuss the issues I'm having but i have a major snow storm coming that morning, the office is 2 hours away and I'm the first appointment. I called today to reschedule and was basically told I was not allowed to reschedule. They refused to even tell me when the next appointment is! I have only been to the office once before, its not like I've canceled before and with two days notice! Now what do i do?
thanks for listening. I guess I have a low tolerance for things when i feel crappy.
Posted Today 8:27 PM (GMT -5)
That sucks. I've been hoping the plaquenil would work for you. Is there a change in weather with the snowstorm? My joint pain escalated when a low pressure system came through and we got a lot of rain and cloudy days. I've been having pity parties and feeling like the sky is falling since then. So hugs.

I hope the weather won't be too bad tomorrow and you'll be able to get in for your appt. That is awful they won't reschedule. I guess see what the weather does in the morning and call them again. Maybe you will get a different person who will at least explain things more.

Take care.
Posted Today 8:37 PM (GMT -5)
So sorry Lab that you are suffering. Did you explain to them the reason why you want to cancel the appointment?
I always feel crappy for exactly 4 days after I take my Remicade dose. The first two times I took it, I called my GI's office because of extremely severe abdominal pain and explosive diarrhea. In both times, he insisted on seeing me. I could hardly move. I was very ill and my GI's assistant informed me that other patients have post infusion side effects similar to mine though this is not mentioned in literature. I get dizziness too for which my GI prescribed Stugeron, an antihistamine used for ear and balance. However, these symptoms didn't occur that vigorously last time may be because the infusion was delayed for 10 days and my body was in a bad need of it.
Hope you feel better soon :/
Posted Today 11:21 PM (GMT -5)
Oh Lab...I am so sorry you have to go through that schedule! I swear they eat mean pills just for fit and giggles!!

So when this happened to me.I explained that I lived over 2 hours away...she didn't even blink so I called the office manager, the physician assistant and I called the nurses, left messages with all of them, called and requested the doctor call me personally.... I got so angry I called pretty often. Enough to be a real bother but not a pain. My doctor was furious after he found out (and not at me). He now records the calls for quality assurance and spot checks them so that it is no longer a he said she said situation.

I really don't like some of those schedulers. Hope you get it worked out.Remember...your safety should be your number one concern!

On the Remicade...I usually have a rough period after my infusion. At first I didn't but the last 8 months...yucky!! And if severe weather is coming in....oh that's bad. I can barely move my joints hurt so much. Last 8 months or so for that too..

Clo
Posted 2/12/2017 3:32 PM (GMT -5)
Hi all! Thank you so much for your responses! Still feeling yucky. I got a different receptionist who managed to move my appointment to next week though i was told there would be a long wait which is totally fine. Im So epically confused by this because there doesn't seem to be any definitive pattern. I don't know if it was the plaquenil that helped or just luck and time! You guys could be right, some kind of new delayed infusion reaction or a severe reaction to weather changes, I don't know. I had a mini flare of gastro issues too but they seem better now. so weird because this was the first time i went into an infusion not feeling like I was in desperate need and now this. Blah! Hope all of you are having good days! lots of hugs to y'all!
Posted 2/13/2017 9:13 PM (GMT -5)
Lab,

Gosh I was hoping the Remicade had kicked in and you were doing better.

Please let us know how your doctor appointment goes.

((Hugs))

Clo
Posted 2/13/2017 10:07 PM (GMT -5)
Thanks Clo! Got bad news from my orthodontist today on a totally separate note. Im hoping the the Rheumy appointment goes better:/
Posted 2/13/2017 11:05 PM (GMT -5)
Sending hugs and positive thoughts your way.

Please let me know how it goes.

Clo
Posted 2/14/2017 6:42 AM (GMT -5)
That sucks, Lab. Bad news about teeth is always depressing - I know the feeling. When is the Rheumy appointment? Hope you have better luck with that :-/
Posted 2/14/2017 2:10 PM (GMT -5)
Thanks, Rheumatologist appt is today.
The teeth thing is really depressing. Never had any trouble with them though I also never had braces. I've been wanting to have them corrected for along time but with the crohns being active no one wanted to touch them. Now I'm starting to have real problems with them. The dentist told me I need my wisdom teeth out and one other to help the crowding and prevent decay. The oral surgeon sent me to an orthodontist who is extremely good (works at a major teaching hospital) so that he could come up with a plan before any teeth are removed because he figured I'd probably need multiple others removed to fix the crowding and help my jaw. I went to the orthodontist and he said " did he tell you anything else" and I said no, he responded with " I guess he left it to me to give you the bad news" and went on to tell me that my jaw is so messed up that I'd need to have two major jaw surgeries to correct it, one to expand my palate and one to I think realign it. both are extremely long painful recoveries. He didn't think that with my medical history this would be a good idea at least right now and is going to discuss it with the others. He told me to think about what my goals are for the future. But basically I'm stuck with a painful popping jaw, biting my cheek when ever I talk and tons of other stuff that's been annoying me but until now the crohns over shadowed it and it was part of the cacophony of discomforts. So fun medical times! I have a follow up in two weeks to discuss what route to take. I also really don't feel like destroying my face because these things aren't very noticeable visually but they will be during the recovery.
Posted 2/14/2017 3:09 PM (GMT -5)
Eek, that is bad news! I have your issue of overcrowding; I discussed with my dentist the possibility of removing a couple of teeth but there has been significant bone loss in some of my bottom teeth and the dentist didn't want to risk destabilising them further. He said if I'd seen him earlier then something could have been done. What really annoys me is that all this was preventable, but the dentist I'd had before that just kept on fobbing me off - I had periodontal disease and didn't even know it. My gums didn't bleed when I brushed them; the only sign was inflammation at the gumline and gum recession in the front bottom teeth.

Anyway, to cut a long story short I spend twice as long brushing my teeth now. I use different-sized interdental brushes to get into all the gaps that toothbrushes can't reach; they have been amazing. I can't reverse the bone loss that's already happened, but I've been able to reverse the gum pockets. It's harder, but possible, to keep overcrowded teeth clean. Flossing is good too, but I think the little brushes are better personally.

As for the jaw surgeries, that is not a fun decision to have to make :/
Posted 2/15/2017 11:55 PM (GMT -5)
I went for my follow up with the Rheumy. It was kinda useless. She has no idea why I keep getting these "flares" of intense body aches. She said that my compliment level was low which usually indicates lupus but that she did not think that is it. She suggested switching my Medications around. My choices are switching the 6mp to methotrexate, upping the lialda to 4 pills a day (yep despite everyone saying they are no better than a placebo Rheumies love them because they mysteriously help joint pains), or upping the Plaquenil. I told her i needed some time to think about this. Im really worn out of trying to chase these symptoms. I had two odd bouts of D this week when I usually don't have any. I feel a bit better today and am hoping this all passes and is some new "schedule" of how my body reacts to remicade. I guess only time will tell. I still have an odd pain on the lower right side of my pelvis not connected to the crohns that's been going on since last august or so. I should probably find out if there is a reason for that maybe its tied to the other issues.

@NCOT Ugh! what caused the bone loss? (crohns, steroids, etc?) Im glad you were able to reverse some of the gum issues and find a good routine. yeah, I went to one when i was in my teens and he told me everything was perfectly fine even though it was obvious i needed braces and should have been referred to someone. I then went two years ago to someone else and they told me that certain ones should be pulled but that with the active crohns it could cause my gums to recede and all sorts of other havoc. I have no gum issues though i do get mouth sores when I'm in a flare. So here we are. some of my wisdom teeth have decay and i really dont need an infection so there is no getting out of dealing with them. I don't know. This is a whole new mess for me to deal with.
Posted 2/16/2017 10:17 PM (GMT -5)
Oh Lab,

Gosh...that just sucks!! I messed around and had an infection take over one side of my mouth. I ended up getting 6 teeth pulled. That was right before I showed symptoms of Crohns.

Now I have a broken off front tooth (from my Sept. Operation) and I am still in a flare and sick.....so my dentist said no...he won't touch it until I am stable.

But none of that compares to yours! !! Yikes!!!!!

I hope you hear better news soon!

Clo

Post Edited (clo2014) : 2/17/2017 12:16:59 PM (GMT-7)

Posted 2/17/2017 7:51 AM (GMT -5)
Sorry Lab, I somehow missed this thread >_<.

I wonder if it is worth exploring the complement deficiency further. I must admit, I had never heard of it before until you mentioned your low complement levels in another post. I'm also wondering why your GI thinks you don't have lupus.

On the other hand it could just be a Remicade reaction. There was a guy on the UC board who got into remission on Remicade but had body pains so severe he was on Tramadol for two years. He had every test under the sun but no cause was found. Eventually he stopped the Remicade and went gluten-free. He doesn't post any more, but last I heard he was still in remission and the pains were much better (though not fully gone).

It properly sucks when a medication works but the side-effects are almost as bad as the original disease itself.

As for what caused my bone loss, I don't know exactly but a combination of taking steroids for a long time and active Crohn's seems by far and away the safest bet. I didn't wear braces when I was younger either and wish I had done now :-/ I blame my parents for putting me off the idea - wish I hadn't listened to them either and gone ahead with a brace while I was a teenager and it would have been 100% free. Now my teeth are an utter mess, which I have to try keep going for the rest of my life 'cos I certainly don't want false teeth.
Posted 2/18/2017 2:14 AM (GMT -5)
Hi guys,
@Clo oh dear! I fear mouth infections! that sounds like it was a horrendous ordeal! I hope you are able to get your tooth fixed soon, It really hurts to have one that is so visible be damaged!

@NCOT my GI does not know about the complement issues, I haven't seen him since December. I usually see him when i get my remicade but he wasn't on last time and I wasn't told how long to wait for a follow up. I am not having any GI issues other than a few scattered episodes of nausea and D, so I'm thinking I might wait a bit longer to bring this up to him. The Rheumy was the one that discussed this. She didn't say it wasn't but she thought it was unlikely because my lab work looked really good otherwise. She may look into it further when I follow up in two months. She was sending me for some other rare disease blood test that she figures is pretty unlikely but wanted to double check.
The remicade reaction is a possibility. I don't think I'm willing to risk it yet though until i feel like I've looked into everything possible. I am going to try to clean up my diet a bit and see if that hemps at all. not that it has changed or is that bad but just tp rule everything out first.
In regards to the braces, me too. My mother was very ill even when i was a small child and couldn't get me to appointments even though she wanted to and my father basically didn't care so now a have a mouth full of a mess. I am happy though that they believe that at least somethings can be improved even if my health is too risky to fix everything with the surgery.


odd day, my aches have eased some what but this "new" pain has become a priority. Have to have an ultrasound beginning of next week to see if they can find a cause. It's been pretty bad today, very localized but intense. Ive had it pretty consistently since last august-ish when it was thought to be a UTI but then testing came back fine and GI work up was okay so it dropped to the low end of the list. It started at the same time i started getting migraines and the random body ache episodes. My PCP kind of shrugs it off when I bring it up because my MRI came back okay. last time she told me rather flippantly that its probably a "bit" of endometriosis, with out any diagnostics to base it on. To be fair I have had a lot of other things going on that she was focusing more on but i think this one has waited long enough. I'm going t skip the pcp and go back to my old GYN thats not affiliated with my new docs but at least can get me in rather quickly to see if there is a problem or not. Lets hope for the best
Posted 2/20/2017 3:35 AM (GMT -5)
Tuesday cant come soon enough. the pelvic pain has gotten worse and I now cant sleep with it. I called the pcp's office Saturday because i was actually contemplating the ER but my doctor was not on call and they could not reach her. The on call dr didn't know what to tell me and said the best advice he could give twas to "use my best judgement" and If i felt bad enough to go to one of the urgent care walk-ins. I really didn't feel like dealing with the urgent care or ER so hoping i can wait it out, but at this point i song think ill be sleeping for quite some time :/
Posted 2/20/2017 3:56 AM (GMT -5)
Everyone seems to be having a pretty miserable time of it at the moment on this board :/

In a similar boat to you, Lab, but with upper abdominal pain instead of pelvic pain. Can't get in touch with my GP surgery, don't feel like dealing with urgent care or A&E. I hope your ultrasound next weeks gives you some answers.
Posted 2/20/2017 4:10 AM (GMT -5)
Mesalamines aren't known to help with joint pains, but the older sulfasalazine from which they were derived is sometimes used by rheumatologists to treat joint pain. That seems odd to me that the rheumy is using Lialda for joint pain. I don't think there's good evidence for that.

How much 6mp are you on? And for how long? Switching to methotrexate might help with joint pains, but maybe not too. And you may have difficulty tolerating it - or you may tolerate it fine. But, yeah, it is something to consider

As for the orthodontic issues and the jaw surgery, my other brother (the one without UC) was told he may want/need that type of surgery to really fix his teeth. His issues aren't too bad so he declined. A former coworker from 20 years ago had a big problem with mal-alignment and she opted for surgery - and ended up having something like 5 surgeries in all to get everything straightened and lined up. Sounds pretty rough. I wouldn't do it unless I was otherwise pretty healthy and even then, it still sounds rough!

I too have periodontal disease, despite being completely obsessive with my brushing and flossing since I was a teenager. Like NCOT, my front lower teeth have significant bone loss, to the point that I can make those teeth move a little by pushing on them. Might lose them one day. I also have receded gums in other places but those are by far the worst in that sense. Could be from having Crohn's, but periodontal disease is extremely common in the overall population by the time you hit your 40s and 50s, so it could be unrelated to Crohn's. I get tired of the dentists telling me I need to floss more. "More than three times a day?" I always ask.

The low complement levels often indicates lupus but I think I remember reading that it can also happen just from being on Remicade. If I can find a link for that I'll try to remember to post it.
Posted 2/20/2017 4:14 AM (GMT -5)
@NCOT I know- we need some good out comes to brighten things up.
I might have missed it but did you ever get the results of your pill cam?
You should probably go though and get that checked out, I saw your pancreatitis thread there and though I have never had it, Its probably not worth risking it. but yeah, surely understand not wanting to deal with another emergency trip.

On a slightly good note, the body aches subsided considerably!
-except now I feel like I'm getting stabbed in my ovary. smh
My coworker ( who has been taking turns with me being out sick and hospitalized for all sorts of stuff) the other day ordered me to sit down during work. I asked why i feel pretty good for a change, which was half true, hadn't told anyone about this yet and I was covering it up well. her reason was so that i wouldn't end up in the hospital again -_- I was really thankful she said that though because this pain was getting to the point it was hard to cover it up and continue standing so i was provided a good excuse to sit.
Posted 2/20/2017 4:30 AM (GMT -5)
@beave, Thanks for the info!
I would definitely like to see any links you can find about remi and complement. My rheumatologist said she rarely works with patients on remicade and is not too familiar with it so it could be that she is unaware of that. (side note: is it just me or is that weird? don't rheumatologists use remicade frequently with RA? she said she knows very little about it:/) She said Lialda is like her favorite drug and that the helping joint issues is an added bonus of being on it....supposedly
Im on 25mg of 6mp since last april. it was 50 until last august but i had nausea like never before and could not eat. dropping it helped that. Im still not totally sold that thats the cause of this but considering it has caused me problems in the past its possible. I just don't feel confident enough that that is the cause to switch drugs yet and add another variable.

As for the teeth, yes that sounds treacherous. I don't think at this point i could commit to going through all of that when i still don't feel confident enough in my over all health. Ill probably just get a bunch pulled and straightened for now and hope that helps. Then i can reevaluate the surgery when i have fewer issues still outstanding.
Posted 2/20/2017 4:36 AM (GMT -5)
I've gone back to bed with my laptop >.> My bedroom is the only warm room in the flat at the moment.

@Lab - No not yet. In fact, that reminds me, I meant to email my IBD nurse this week to see if the results were back yet. I could kill two birds with one stone and get her opinion on my stomach pain as well... Might do that in fact.

Good news about the body aches! Not so good news about the ovary. I can feel my stomach pain again :-( It's bearable at the moment, but yeah. I don't think I will be able to do my gardening thing this afternoon. Even if I dosed up on codeine, I'm just out of it with lack of sleep.

@beave - I can wobble my front lower teeth a bit too. I'm only 42 so I think I'm a bit too young for my teeth to be falling out just yet. If I could afford it I would just get a whole new set of teeth tbh, but I can't, so I'm stuck with trying to preserve the ones I've got :-/
Posted 2/20/2017 5:07 AM (GMT -5)
@NCOT, sounds like a good idea! hope she gives you some answers!

I just gave up on sleep. Along as I'm moving and I'm occupied the pain is in the background gnawing away. I fell asleep for about an 1/2 hr before and then it woke me up. Some how have to make it to work tomorrow :/ i should be nice and loopy going with no sleep.
And Im assuming its my ovary only because its in that spot, and I'm slightly annoyed so i feel like being as blunt as possible lol. Has anyone here ever had cysts or endometriosis? Im taking bets on which one it is -_- PCP was leaning toward endo.
Posted 2/20/2017 5:43 AM (GMT -5)
The one I really wanted to speak is away on sick leave >_<. I sent a message anyway, let's hope somebody gets back to me today.

Hope you get more sleep tonight :/ Have you got any sleeping pills or painkillers you can take? Trying to operate normally on virtually no sleep is no fun.
Posted 2/20/2017 3:19 PM (GMT -5)
Lab,

I am sorry to see you and NCOT having issues.

I had a cyst on my ovary and tube. It gave me problems from time to time. (Stabbing pain or an awful ache in one little area) I didn't want to have surgery when I was first told about it and the obgyn said to take a wait and see attitude.

I went to my obgyn, he took blood for tests, started to do a pelvic, I heard it pop when he pressed on it. I immediately started puking, the room spun, he told me to rest for 30 minutes then go home and take my antibiotics. He thought it was just infected. I went home and almost hemorrhaged to death. Luckily a friend came by to check on me, found me unconscious and got me to the hospital. Yikes....

That was over 30 years ago...and now when they tell me I have a cyst...I almost run down the hall with me bottom hanging out of my gown screaming...... Scares me it does...Lol...

Hope your outcome is better than mine..Please let us know how it goes...

Clo
Posted 2/20/2017 4:57 PM (GMT -5)
Well now I'm thoroughly confused and upset. I managed to convince the Obgyn' receptionist to fit me in today. He didn't say much other than getting my history down. He told me how pain in that area can be due to active crohns but I impressed upon him that my GI has throughly exhausted all tests and everything has come back that the crohns is in remission. I have a migraine and have been in pain all day. The exam hurt so unbelievably bad, worse than in the past. He told me he is rearranging his schedule and he needs me to see the "very best sonographer on the very best machine available". This is startling because it's coming from a former director at a large teaching/research hospital. He was not very transparent in what he was thinking. I don't know whether he is not sure what it is just wants to be thorough, or that he has big concerns but he seemed very serious.

@clo that's terrible! How long was your pain going on before hand? Mine has been going on to some degree since early last summer.ot sounds similar. I'm worried about that because I'm on the blood thinner to top things off

Post Edited (Labradorite) : 2/20/2017 3:15:30 PM (GMT-7)

✚ New Topic ✚ Reply
123