When Entocort isn't working?

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Cat-a-Tonic said:
Well, I just spent a very frustrating hour on the phone with my prescription drug coverage provider and got nowhere. Ended up hanging up in tears. For some reason, even though I have a prescription slip in hand for Vivonex, they need it faxed to them by a doctor - I cannot fax it to them myself (???). That's what they told me. That makes absolutely no sense to me. I have the damn prescription so just fill it! Ugh.

I think I'm going to drink my morning Vivonex, wait for the pred jitters to calm down a bit, and then just go to my local pharmacy and see if they can do anything. Maybe they can special order it in or something. If not, I'm going to call my GI first thing on Monday morning, and I'll see if he can fax the prescription over to the stupid bleeping prescription drug coverage people.

Why the F is this so hard? Like it's not hard enough having a chronic illness, but you also have to fight with everybody and put in way more effort than should be necessary just to get the things you need to keep you alive. It's so unfair and it's draining and it just sucks.
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I agree.
 
The vionex won't be covered under your prescription drug coverage benefits ( at least for most folks ) so taking it to a phamacy will give you a very high price. The inpatient home health service nurse at the hospital should have faxed it and the letter of medical necessity to the durable medical equipment company that works for your insurance. They are the ones who get it covered under your Medical benefits as infusion therapy supplies for home.

99% of prescription plans that I know of do not cover elemental formula under the prescription plan - unless you have certain inborn health conditions found at birth and even if you don't unless your tube fed.

I know it's very nerve wracking - went through it twice for Ds when they first prescribed peptamen Jr and the switched inpatient to neocate Jr where we had to change the flavor and needed a new script etc and were told it wasn't covered then it was and getting delivery set up etc...
Thankfully once you get your first months supply ( however maddening) it will get much easier to "refill" it

Good luck and lots of gentle hugs

How much vionex have you been able to drink a day ?
Not getting enough calories in can take its toll as well
 
I've only had 3 Vivonex per day - partly because I can't drink much more than that, and partly because I'm rationing it until I can get some more ordered. I had talked to a pharmacy on Friday that quoted me something like $600 for 4 cases. That's the cheapest price I've found so I'm just going to call them tomorrow morning when they open (they are closed on weekends) and put that on my credit card. Stuff like this is what credit cards are for, and my parents said they'd help me out with money stuff if need be. 4 cases should be more than enough to get me through - in the hospital they told me to try EEN for 2 weeks and then slowly start to transition over to bland low-FODMAP foods (I'm going to start with rice I think). I've already been doing EEN for something like 4 or 5 days and I am improving. Although if starting solid foods again becomes problematic then I'm going to be in for an expensive time, and at that point I'll figure something else out. Right now I'm just so tired of fighting insurance companies, I don't care anymore, I'll just pay the $600 and deal with it.
 
Yikes that's about 750 calories a day

Hope you can get through to the pharmacy in the am
Also ask them how many cans are in the case
Typically is 27 cans In a case which gives you 2-3 days of formula depending on your calorie needs
 
Do you know how many you're supposed to be drinking Cat? 750 calories a day means you will continue to lose weight quickly.

My daughter needed 2400 calories a day to gain, about 1600 calories to maintain. I would guess you need at least 1600 calories - 6 cans or so.

Sending hugs -- insurance is such a pain sometimes.
 
Yes, I know, they told me to drink 6 cartons daily. And I believe there's 24 in a case - so if I were doing that right now, I'd run out really quickly. I do intend to drink more as soon as I can get more. I'm sure I could have done 4 yesterday and same for today, my appetite for it is gradually improving. I just don't want to run out right now because then I'll be sunk. As soon as I can talk to the pharmacy tomorrow and make sure that I can get the 4 cases that are on my prescription (and how quickly), then I'll feel much more comfortable with drinking more than 3 per day because then I'd know that I have enough to get me through this.

My weight actually has stabilized, I think. At least, I didn't lose any weight today. I'd been losing about 1 lb per day for over a week, but today my weight was 129 which was the same as yesterday so hopefully that's a good sign. And I've only had 1 bowel movement today!! Not sure if it's the pred or the Vivonex (probably a combo of both) but something is helping.

I'm just sort of in panic mode until tomorrow! Tomorrow I can talk to the pharmacy and I can talk to my GI. For today I'm still in this weird holding pattern where I desperately don't want to run low on Vivonex so I'm purposely not drinking enough. I know it's bad but the alternative (running out) is worse. I promise I'll be getting much more adequate calories after tomorrow! And I appreciate you guys worrying about me.
 
Okay, I got ahold of the specialty pharmacy and they're sending me 3.5 cases of Vivonex for a bargain price of only $626. Should arrive tomorrow or Wednesday. So I feel comfortable now drinking more than 3 per day because more is on the way. I've already had 2 today and I'm aiming to try to drink 5. I know that's still not enough calories but I just don't think I can drink more than that today. I'm still not feeling great, the last 2 days I've only had 2 bowel movements per day but today it's already been 3 and I'm a little more crampy today than I've been the past few days. Hopefully just a fluke. Of course there's still the little voice of panic in the back of my head, screaming at me that when I stop the Vivonex and/or when I taper my pred that everything's just going to go to hell again. That's a definite fear and I'm just trying not to think about it.

Also frustrated with my GI's office. I called them at 8 AM on the dot and the receptionist was aware of my situation and she said somebody would call me back. Well, it's now noon and no call. I don't know what's up with that, I'm going to call them back myself in a little bit.
 
Hugs
We had similar fears for when Ds restarted food and stopped pred ( he was on it for sweets syndrome )
It's been two months and things are not the best but the D hasn't come back
Granted Ds did have to stay on een for 8 weeks .

When he was hospitalized the second time we were told een for only two weeks btw
 
I'm frustrated now. Called my GI's office to see what's going on. They got me an appointment - for Sept 14th. That's over 2 weeks away. Guess I'm not having that MRE, then! That's really frustrating.

What would you guys do? Just wait for Sept 14th, or should I see if I can get an appointment sooner with my GP? (He usually has openings the same week.)
 
Cat-a-Tonic said:
I'm frustrated now. Called my GI's office to see what's going on. They got me an appointment - for Sept 14th. That's over 2 weeks away. Guess I'm not having that MRE, then! That's really frustrating.

What would you guys do? Just wait for Sept 14th, or should I see if I can get an appointment sooner with my GP? (He usually has openings the same week.)
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See if you could get in sooner with the GP.
 
I'm not sure your GP will be able to do much. Do you think he/she would be willing to call and get you in with your GI earlier?

None of your tests showed inflammation, right? FC, scopes, biopsies? I wonder if the GI doesn't think it's urgent because they couldn't find inflammation.

Though considering he has you on Prednisone, I would assume he thinks there is inflammation somewhere.

I think the MRE would not show much anyway, since you have been on IV steroids + plus Pred + EEN. Not sure it's even worth doing at this point.
 
my little penguin's son was in a very similar situation - they couldn't find inflammation. I hope she'll chime in soon with ideas.
 
I agree with Maya
Mre probably isn't going to show much at all at this point
I would call your Gi office back
When Ds was discharged the go office called and have him
A follow up appt - 4 months later - I insisted they check with the Gi
The Gi wanted Ds seen within two days
So please call back
Gp really can't do Gi stuff
 
I did get an appointment with my GP for tomorrow afternoon. I will discuss with him the MRE and see what he thinks. And yeah, the thought all along has been that I have IBD and we have ruled out any other possibilities that pop up. The few times they've found inflammation either on blood test or on scope, it's always been mild and non-specific.

I'm sort of adrift because I'm not sure what criteria I should use for going back to work, if it should just be based solely on how I feel or what. So I'm also going to ask my GP about that tomorrow. I just feel like I need guidance, about whether to do the MRE or not and when to work or how long I should be out of work and what to do if the taper doesn't go well, etc. I was in the hospital and had people checking up on me like 10 times a day, now I'm home and nobody's checking on me and I feel adrift. I need guidance!
 
I should add, my GP does do some GI stuff. I know he performs colonoscopies. He's obviously not as knowledgeable as a GI but he's not clueless either.
 
It's worth talking to the GP and getting his opinion. I doubt it'll hurt and maybe he can get your GI to see you earlier.

Have they had an infectious disease specialist look at you? Rheumatology?
 
The worry is that if the problem is not IBD, then Prednisone will just mask it.

I know at a Children's Hospital, they would not give steroids unless there was some objective evidence of inflammation, such as positive biopsies.

I don't mean to worry you Cat, just want you to be aware of the possibilities :ghug:. Certain rheumatic conditions can cause GI symptoms and even mild gut inflammation, so there are really other things it could be.
 
Yes, at my last scope a few years ago I made sure they checked for mastocytosis.

Yeah, I know there's other things it could be. We've ruled out a lot of the big ones, but I know it's probably impossible to rule out everything it could be. It's always "fit" IBD and it's always responded to steroids (including Entocort up until this flare).

Would rheumatic conditions show up in my ANA? I've had it checked in the past and it was always normal/negative.

I'm just sort of lost in this flare. It's worse than any flare in the past and it didn't respond to Entocort. That's new and scary. I've had this IBD or whatever it is for nearly 7 years now and it's scary that it still has surprises in store for me. I'm still in panic mode, clearly.
 
Basically we have been in a holding pattern
All tests are normal except Mre showed some thickening but since his pill cam and scopes were normal - nada
They looked at
Pancreas
Liver
Stomach
Gallbladder
Lyme disease
Infectious disease
Immunodeficiency

Still doing MCAS urine testing
But nothing has come back with answers
Just that Ds does better on mostly formula diet and in particular elemental formula

Hope you get more answers
 
MLP, my heart goes out to you and your son. I've said it before but I'm a 36 year old woman and I can barely handle this situation - I can't imagine being a child and feeling like this. I really hope he gets some answers and starts doing better, soon.

They've looked at a lot of those for me, as well. My liver, when I first was ill, it had some weird nodules on it ("focal nodular hyperplasias") but they've since disappeared and apparently that wasn't related in any way to my digestive issues. Pancreas seems fine, liver is now fine, gallbladder seems fine. Stomach has recurrent gastritis thanks to my GERD but is otherwise apparently fine. They've checked me for Lupus, Addison's, RA, many others I'm not remembering right now. It's definitely frustrating when nothing comes back with answers.
 
MCAS and mastocytosis are different, I think.

You could have a negative ANA/RF and have RA. You can have completely negative blood work (low CRP/ESR) and have SpA.

With SpA, mild gut inflammation is common and goes away once the SpA is treated. Symptoms are typically morning stiffness, lower back or hip pain and pain that gets better with movement and worse with inactivity. Really any joint could be involved (though SI joints/hips are most common).

I hope the EEN + Prednisone will help. Entocort sometimes does not help depending on where the inflammation is and if it's severe. It usually helps for inflammation in the TI/ascending colon. Since your scope didn't show that, it makes sense that it didn't help.

If you have inflammation in your jejunum for example (where a scope can't reach), Entocort wouldn't help with that either. But Prednisone definitely should help with that and so will formula.
 
MCAS and mastocystosis are very different
The link to the slide eventually explains the difference I understand your frustrations and hopefully yours is a one of event
 
I'm getting nervous because I don't know if the pred is helping enough. Although it has only been 4 days on pred. It's hard to say. I'm still having some mild abdominal pain & cramping and I've had 4 episodes of d today. I just don't know anymore. In the past, I've only ever been on really short bursts of pred, but it always helped right away. Like, I feel like I should have a ton of energy and a huge appetite and feel a lot better right now. Not so much.

But, on the other hand, I can sleep which I couldn't do when I was on the Entocort (the cramping/pain would wake me up) and I was having sometimes 20 bowel movements a day before the pred. So it probably is helping. I just keep second guessing myself, I don't know.

I don't think I have SpA, I don't experience stiffness in the mornings. I do get hip pain and I have some type of hip arthritis (GP thinks osteo, rheumy thought inflammatory). The triggers for it are mainly high impact exercise (jogging will put me in hip pain for days) and weather (snow, bitter cold, and sometimes rain will set it off).

Okay, so that link about mast cells, there's like 153 pages there and it overwhelmed me (everything is overwhelming me lately!). Can someone boil it down for me?
 
Sometimes pred has been miraculous for my daughter -- other times, it takes a while. But with IV steroids + pred, I'd expect you to be much better already :(. 40 mg is a pretty standard dose for IBD (and considered pretty high for inflammatory arthritis).

I don't know enough about mast cells -- my little penguin will have to fill you in.

They did test you for CDiff -- right? It took two tests (two weeks apart) before my kiddo's test was positive. The watery diarrhea 20 times a day really sounded like CDiff.

Those triggers for arthritis are pretty standard - could be osteo or inflammatory. If it's not really bothering you and you don't have morning stiffness, I wouldn't bother investigating.
 
Another thought -- what if you need a different maintenance medication? If it is Crohn's, a 5-ASA will not do much. There is pretty good evidence that shows that. You'd need an immunomodulator like MTX or 6MP.
 
Yeah, they tested me for c diff, salmonella, campylobacter, basically all of the major bacterial infections. All negative. I can ask my GP about it tomorrow. The diarrhea has slowed significantly (today I'm up to 4 times) and far less watery. But it is still there. And it is disconcerting that I'm not more improved on 4 days of IV steroids and 4 days of 40 mg pred. Either it's the most stubborn flare ever or it's something else/more going on.

I'm sure that Lialda isn't the best maintenance med for me and I do probably need something stronger. That's a road block that I've run into from being undiagnosed, though. My GI is fairly confident that I have IBD, but he is also hesitant to use the heavy duty meds on a technically undiagnosed person, so mesalamine is basically all he's willing to offer me for maintenance. I don't know if I can convince him that I need something stronger now that I've had this flare. I can try.

I've had a symptom which is interesting. So back in 2009 when I first got sick, that's when I first started having migraines. Never had them before in my life. And they'd always start with an aura, always on the right side, and then the head pain and nausea would start maybe 15-20 minutes later (it was never super severe head pain or nausea, it was always tolerable) and also sensitivity to light & sound. My GI put me on amitriptyline 25 mg and that basically stopped the migraines, I'd get maybe 1 every couple of years (rather than 1-2 per month).

So, fast forward to this year. I went to Japan in April and I got a migraine aura my first full day there - but no head pain, no nausea, no actual migraine following the aura. I figured it was just because the timing of my amitriptyline was messed up (I take it at bedtime but bedtime in Japan is 14 hours different than what it is in the US). Well, just last week, in the hospital on Friday a few hours before being discharged, I had another aura, but once again no actual migraine accompanying it. Today, I've had 2 auras which I've never had before. That's super weird. I had one on the left side a few hours ago, and just now I had one on the right side. I don't know what's causing this - I presume it's a flare thing since migraines came into my life along with IBD? Or maybe it's that my body is getting a ratio of vitamins that it's not used to from the Vivonex and that's doing it? Or is it the pred? I really have no idea. Nothing in this flare makes any sense to me, I'm just lost.
 
It could definitely be a pred thing, although I don't start to taper until Wednesday. And I was wrong, that 2nd aura did bring some head pain along with it (tolerable, not shattering pain).
 
But going from iv steriods to oral steriods is a taper
Add in for Ds at least the higher dose steriods just lots of migraines .

Did they at least give you rescue meds for your migraines ?
 
That's true about tapering when coming off of IV steroids, I didn't even think of that. That would make sense, too - my last day of IV steroids was Thursday, I switched to oral pred on Friday, and Friday I did have a migraine aura.

No, I have no meds for migraines. At one point they tried me on generic Imitrex, which did take away the initial migraine, but then it gave me a rebound migraine the following day. And that was the only med they really tried on me, so now I just sort of deal with migraines and take zofran for the nausea and that's it.

Can I ask, did EEN give your son a lot of gas? Yesterday I had 5 Vivonex, which is the most I've had in a day (I was doing 3 a day up until yesterday). And I felt so bloated, full, distended, gassy at bedtime yesterday. I didn't look distended but I sure felt like it. This morning I feel much less gassy/bloated and I actually had what appeared to be a somewhat formed bowel movement first thing this morning. So hopefully the gassy feeling was just my body adjusting to getting more Vivonex than usual.
 
Yes gas is normal with een while the good bacteria gets built up so to speak
It does lessen
It also gives you bad breath and gunk on your teeth/tongue that's hard to get off
Make sure to chew daily - either a chewy stick or crushed ice so you keep your jaw muscles strong
Ds started een again today
Something he ate triggered horrid abdominal pain /feeling like he will vomit so
Trying a reset for a day or two
 
Cat,
I found that if I diluted the Vivonex with 50% water they were easier to drink and I had less abdominal distension from them. Of course then you need to drink more to get the full allotment in. I was on the powdered VivonexPlus and I just used more water when I mixed it.

It took me quite awhile to achieve remission on EEN--four months. Since you are doing EEN anyway, you may wish to look at Dr. Hunter's program from the UK where you do a full elimination diet when you begin eating again. It is not an easy thing to do and you must make sure that you keep track of your intake and continue to supplement with the EN until you have a full solid food diet.

Here is some good info about it: http://nutricia.co.uk/e028/uploads/LOFFLEX_Diet_Diary_Full.pdf
 
Oh yeah, I've definitely noticed my breath being terrible and my tongue getting coated with white gunk from the Vivonex. And the pred is giving me terrible dry mouth so my mouth is just a mess right now. I will make sure to chew on crushed ice. My dog loves crushed ice as well so I will have to share some with her but that's okay. :) I feel like I've been a really bad dog owner lately, I don't have nearly enough energy to even walk her around the block, so anything I can do to make her day more fun is a good thing.

Happy, I will look into the elimination diet. I've been tentatively thinking that I'm going to do low FODMAP once I start introducing solid foods again, starting with the really bland stuff like plain rice. I'm not very familiar with the elimination diet so I'll look into that as well.

I see my GP in a couple hours and I think I'm going to beg for a longer pred taper. My guts feel fairly rough - after my sorta formed bowel movement this morning, the cramps came on and I had a couple of very watery bowel movements. :( Ugh. I'm just not ready to taper, I don't think.
 
It went about how I expected. He's conferring with my GI, trying to get my GI to order the MRE. He doesn't think infection - he said they tested my white & red blood cell counts several times while I was hospitalized and it was always normal, so he doesn't feel re-testing for c diff or anything else is worthwhile. He thinks it's just a nasty flare that for some reason isn't responding super well to the pred. He's going to ask my GI about possibly extending my pred run, I told him I don't feel ready to taper.

He did mention Humira which I found interesting. He thought it might help me. But then we both agreed that my GI would never put me on Humira without a very firm diagnosis.

I also asked him how long I should be out of work, and he said a minimum of another 1-2 weeks. I know my boss wasn't happy to hear that but I'm relieved that I get some more time to rest and recover, I feel like I really need it.

So yeah, he's conferring with my GI and I should hopefully get a call back tomorrow. If the MRE can't be scheduled, like, immediately, then I don't think it's worth having it. I'm just going to try tapering my pred tomorrow and let him know how I'm doing when I get the call back.
 
I'm glad he's going to talk to your GI. Unfortunately, I agree, it will be close to impossible to get Humira without a diagnosis, because there would be no way to justify the cost to insurance if they have no evidence of inflammation. Plus, if you don't have Crohn's, it could make you sicker.

6MP or MTX might be easier to get since they are cheaper. But again, without a diagnosis, I think they also might be hard to get because they are immunosuppressants.

I hope he can get an MRE scheduled, though I wish they had been able to do it before giving you Pred and IV steroids because then you might have gotten a diagnosis.

I hope you start feeling better soon :ghug:.
 
MLP, I haven't heard of that program. Unfortunately though there's not a testing site anywhere near me, the closest one is like 12 hours away.

I think I might have finally turned a corner in this flare. This evening, I actually feel... hungry? Like, I would kill for a pizza right now. :p It would probably in turn kill me right back though. I'm sticking with EEN, it just suddenly got a bit more difficult. I haven't had an appetite in weeks so it's really weird to actually feel hunger. Maybe this is the pred finally kicking in and/or me finally healing up from the Vivonex?

I don't think the MRE is happening. If I am finally healing then there's no point.

Speaking of meds, I wonder what the odds are that my GI would be willing to try me on LDN? I seem to recall reading that it's got a very low risk of side effects. Like, it could help and probably wouldn't hurt. I don't see my GI for 2 weeks so I am just sort of starting to brainstorm ideas of what to ask him about. I don't think he'd do a biologic and probably not an immunosuppressant either, but maybe something like LDN?
 
LDN is a good idea!! Forgot all about that.

The other thing you could do is try a different formulation of mesalamine. If I remember correctly, Lialda releases in the colon and is used mostly for ulcerative colitis. So if your colon is ok, it won't really help.

But Pentasa is released in the small bowel and colon, so that might work better for you. It is also used more for UC (all the 5-ASA's are) but our GI also uses it for Crohn's (with other meds like MTX/6MP or biologics).
 
I've already tried Pentasa, and it didn't work great for me. I really do think I have involvement in the TI and colon as that's where I feel the majority of my symptoms. Asacol (the regular one where it was 6 tablets per day) kept me in remission for a couple years, but then they stopped making it. My GI tried me on Asacol HD, but my body couldn't break down those 2 giant horse pills so they just passed through me undigested, and I ended up falling out of remission at that point (this was in like 2013). I then tried Delzicol but that was also hard for me to break down, because it was essentially Asacol tablets inside of capsules (seriously) so my body had to work hard just to digest those. Then I tried Pentasa and that was so-so. Then Lialda and that's been working fairly well up until this flare. So yeah, I think aside from Apriso, I've tried basically all the mesalamine formulations at this point! :p

Oh good, I don't know much about LDN but it's encouraging to hear you say it's a good idea. I will make sure to do more reading up about it so that I can really pitch it well to my GI in a couple weeks.
 
I don't really know a whole lot about LDN since pediatric GIs tend not to want to prescribe it. There are also plenty of adult doctors who refuse. I have heard some parents say it only works for mild IBD.

But you should really check out the LDN thread - the people there will know best. We did not want to try it because there is not a lot of research on it and the research there is was kind of mixed (or at least, it was the last time I looked). But it's worth looking into since your options are limited.
 
I will check out that thread. I have no idea if my GI will be on board with LDN or not, but I guess the worst he could say is no. And hopefully he'll have some other ideas too. He's well aware of my situation, I've been keeping him updated via email and all the doctors I've seen have also been updating him (they're all within the same medical system). So hopefully he's already also been thinking about my situation and what meds I should be on.
 
Ugh, taper not going great. Watery d is back (it was semi-formed, like little pieces, prior to today). And I'm having a bunch of LRQ pain. Called my GI's office to ask about going back up to 40 mg. His nurse is going to track him down and ask him and call me back (meanwhile, I still haven't gotten a call back from my GP). Supposedly my GI is in procedures all day so he's not going to be easy to track down. Fun.
 
My GI just called me. He's trying to schedule the MRE ASAP, I expressed my concerns about the pred possibly masking things that could be seen on it and he definitely agreed that I need to have it done right away. He's also trying to bump up my appointment to be sooner than Sept 14th. And, he said I can go on 40 mg of pred. He said I probably shouldn't be on that dosage for more than 7-10 days (I was on it for 5 days, I just took an extra 10 mg to make today day 6). I'm going to keep in contact with him to let him know how it's going and to find out about the MRE. I was really glad he called, he's definitely concerned that this is obviously the worst flare I've ever had yet nothing has shown up on any of my tests/labs. He sounds pretty determined to get to the bottom of things. And he mentioned the possibility of other meds as well but didn't mention anything by name. When I see him I'm going to bring up LDN for sure.
 
Hmph, frustrated. *Still* no call about the MRE. At this point I don't think it's going to be worth having. I'll see if I get a call tomorrow, but if it goes into next week, I'm going to tell them to forget it.
 
Called my GI's office just now to get the status of the MRE. Apparently the test had been ordered on the 30th but for some reason radiology is dragging their feet on scheduling it. The nurse is contacting radiology and is going to call me back.

I realized this is a holiday weekend - not that it matters to me, I won't be leaving the house nor doing anything fun, and I'm still off of work on short-term disability. But, that means that they can't schedule the MRE for Monday since it's a holiday. So I'm presuming I won't be able to have it until Tuesday at this point, ugh.

I guess the "good" news there is that my guts are feeling quite rough today. Yesterday I was feeling borderline okay - I was able to drink all 6 Vivonex and I felt actual hunger, like I really wanted food. Not so much today, I don't want food and I barely can choke down my Vivonex. I was tentatively thinking of trying again to taper my pred tomorrow, to go down to 35 instead of 30 (am currently at 40 mg). So maybe between me feeling rough and me tapering, I'll still be doing poorly enough that the MRE would pick up on something? Probably not likely I know. Really frustrated that radiology is dragging their feet.
 
Oh, FFS. Radiology finally called me and they can't get me in for the MRE until the 21st. I had them pencil me in but I'm probably going to cancel. I emailed my GI to let him know and to get his opinion for sure before I cancel. I'm really frustrated. This is one of those days where I just want to hibernate. I don't want to be a person, I don't want to drink my vivonex, I don't want to do anything. I just hate the world today.
 
Cat-a-Tonic said:
Oh, FFS. Radiology finally called me and they can't get me in for the MRE until the 21st. I had them pencil me in but I'm probably going to cancel. I emailed my GI to let him know and to get his opinion for sure before I cancel. I'm really frustrated. This is one of those days where I just want to hibernate. I don't want to be a person, I don't want to drink my vivonex, I don't want to do anything. I just hate the world today.
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Hang in there
 
It might be worth doing. It really depends and there's no way to know without doing it.

My kiddo was on Prednisone for 3 months for her AS (started 40 mg and tapered down). 3 months in, we did an FC test because she'd had belly pain and her FC came back high. We added Entocort, even though she was still on a low dose of Pred (I think 15 mg) and could only get her into scope 2 months later.

By that time, she was almost off the Pred but still on 9 mg Entocort. We did the scope and there was visible inflammation in her TI and colon. It wasn't severe, but it was definitely there.

So by that time, it was 5 months of Prednisone and 9 mg of Entocort but still visible inflammation.

Of course, Pred + Entocort is still different from IV steroids (and you will have been on a higher dose of Pred for longer - she only did 5-6 days of 40 mg). But for her, it was definitely worth doing. Of course, I do wonder how much worse she would have looked without the steroids, but we'll never know.

But she did have an elevated FC so we knew there was inflammation somewhere...I think your FC is not high AND you've been on steroids for months, then it's pretty unlikely that they'll find anything :(.
 
Yeah, I think my situation is different - my FC was normal when they checked it the week before I was admitted to the hospital. I had been on Entocort for about a month at that time, so I don't know if the Entocort knocked down my numbers or what. That was before pred and before IV steroids. And my scope was normal too, including biopsies. My body loves to look normal on test results even when I feel horrendous. So I'm presuming, based on that and on the fact that I'll have been on pred for awhile, that the MRE is going to be pointless. I don't know. We'll see what my GI says. If he doesn't respond to my email, I've still got that appointment with him on the 14th (he said he was going to try to bump it up sooner but apparently no luck so far). So I can ask him in person about it then, and cancel if need be or still have it if he thinks there's a chance it'll be worthwhile.

Ugh. Well, at least I have something to look forward to. My dad is coming to visit me tomorrow and he's bringing me some money (my parents decided to pay the full amount of what the Vivonex cost me even though I told them they didn't need to give me that much money). He's volunteered to walk my dog, too. And if I'm feeling up to it, he's also said he will take me to the store and buy me a new Lego set. :p I'm an adult woman but I've had fun building Legos in this flare, it's a nice distraction from what my body is doing. So that'll be a nice visit.
 
I'm not sure it would be useful now (because of the steroids) but what about a pillcam? Have you ever had one?
 
Yes, I had a pillcam in 2010. It was, of course, normal. I haven't had an MRE yet so at least it's a test I haven't had, but that's about the only thing it has going for it at this point. I will see what my GI has to say but I don't think it's happening.
 
I feel like I'm finally having some definite improvement. I've actually felt hunger! I'm still just doing the 6 vivonex cartons per day, am planning to start incorporating bland foods mid-week or so. But wow, I sure could go for some food! I haven't had an appetite in this flare up until the past couple days or so. I don't trust it, yet - will have to see how incorporating food goes. But it seems like a positive sign.

Also, I had a formed/solid stool this morning!! That's definitely a positive sign, it's either been little pieces or just watery mush up until now. I was so proud of my formed stool, it made me more happy than a bowel movement should be able to make a person. :p

And I'm feeling a bit less weak, slightly stronger. Yesterday I forced myself to go to the store because I was going stir-crazy at home and I needed to pick up a few things. It was hard, I felt weak and shaky at the store, but afterwards I felt somewhat better. Walking does great things for my guts - the best I've felt this year was when I was in Japan, and I was averaging 8-10 miles walking per day on that trip. So I need to make sure I'm walking every day. I'm planning to go to a craft store today because I need more yarn, and if I get ambitious I might even walk my dog around the block.

My mood has improved as well. Yesterday was the first day in weeks that I didn't cry even once. And that's in spite of me getting another migraine aura because I had tapered my pred from 40 to 35 mg yesterday! I'm really loving these noticeable improvements. It's obviously not good in terms of the MRE, but I'm just so happy to be healing. Tomorrow I'm going to taper down to 30 mg (still doing 35 today) and around Wednesday or so I'm going to start doing broth and maybe jello along with my Vivonex. Wish me luck!
 
So glad things are improving
Hunger is a great sign
Totally agree walking is the best medicine when you have the strength
Swimming a close second for the gut

Watching elemental formula work is amazing
 
Thanks guys! I've had 2 mushy/watery stools since the formed one this morning, but I'm still feeling okay-ish. I made myself go to a store again today for a bit of walking and yarn shopping. It felt a bit easier today than yesterday to walk around a store. I'm still weak and shaky but I'm a bit less weak and shaky than yesterday. (And buying yarn is guaranteed to put me in a good mood so that helped too!)

I'm hoping to walk my dog around the block tonight when hubby gets home from work. If I can't, I think I can at least do a couple minutes of slow walking on my treadmill. I don't have access to a pool so swimming is out, but I can do walking. I have a fitbit so I know exactly how much walking I'm doing, too. That makes it easy to set a goal or to try to beat the previous day. So yeah, little baby steps of improvement.
 
So good
Fwiw when Ds got out of the hospital after losing all the weight and being on een
Same thing store walking for short bits was exhausting for him
 
Honestly, yesterday even just driving to the store was exhausting! :p At least today I wasn't halfway wiped out just getting to the store. My weight is still down, I'm sure that isn't helping the exhaustion. I'm maintaining the weight I'm at, though. I had lost 17 lbs and went from about 146 to about 129/130. I'm currently holding steady at 130, so at least I haven't lost any more.

The weather isn't helping either. It's a warm & humid weekend - temps in the 80s. But it's supposed to cool down to the 70s and even 60s next week. My guts do not like heat and humidity, so hopefully when things cool down then my guts will be a bit happier too.
 
Gah, evenings are hard. I've gone all day only drinking Vivonex and water. I want fooooooood! I'm starting to fantasize about food. Like, when I can eat again, I'm thinking of all the things I want to eat. When I was at the store yesterday, I bought a bunch of low-FODMAP flare-friendly food. I already have a lot of rice and jello. I bought broth, rice crackers and rice crispies cereal, plain chips, gluten-free pasta (I can do pasta but low-FODMAP recommends going very light on the gluten so I'm going to try the GF stuff for a bit). And when I can eat again more properly, I'm going to have tuna salad and I'm going to have eggs and chicken. I really, really, really want some food! I would love to just go into my kitchen and cook an egg or grab a handful of chips. Ughh. I feel like the longer I'm on elemental, the harder it is. I want food more every day and today is almost unbearable. I'm really trying to stick to doing 2 weeks straight of elemental - Wednesday will mark 2 weeks. So I just need to keep this going for a few more days, and then not go crazy once I can eat food again (that might be the really hard part). I have to ease back into eating and not just stuff myself silly once the 2 weeks is up. I know that'll make me worse again and I don't want that. I do want food but I don't want to end up back in the hospital or back on EEN. So it's going to be a difficult week and I'm going to have to be really careful.
 
Doesn't baby food have a lot of sugar though? I don't know if that would sit well with me. When I can eat again, I'm going to start with broth and jello. I know there's a fair bit of sugar in jello so I won't have a lot, and broth should be okay. From there, if that goes okay, I'm going to move on to rice. And potato chips. :p I need chips in my life, soon.
 
Big hugs
For most week one of een is hard but ok
Week two of een you crave lots of food
Then it gets better
Quinoa pasta with rice flour is pretty good
There is paleo pasta ( almond four /eggs)
Finding plain white rice flour pasta with just water was tricky but the easiest in Ds gut
Just try to get through today
For Ds he lost the weight in April
Just this last month of August he finally gained the weight back
So it might be slow
 
MLP, yeah, I found some rice & corn pasta at the store yesterday but I agree that I think just rice flour pasta would be best. There is a good gluten-free bakery/store in my city so I can try going there sometime soon. I know they carry GF pasta but I'm not sure if it's just rice or what. I'm going to have to read labels even more carefully now that I'm trying low-FODMAP! I know the main parts of it are no onion, no garlic, and no fructose. Fortunately I saw that dark chocolate is still allowed. :D I need some sweets in my life and dark chocolate is my favorite so that's good!
 
There's a Swiss chocolatier near here and they make the most wonderful dark chocolate truffles and pralinés. That's definitely going to be my treat to myself once I can eat fairly normally again. They're expensive so I can only afford to eat one per day at most, so that shouldn't throw my guts off too much even if it does contain any sneaky high-FODMAP ingredients.
 
Still doing okay here. Tomorrow I'm going to make myself some jello. Wednesday is the day that I start introducing foods. I have some broth and I got myself a cute new mug to drink it out of. Still not working, but getting stronger and hopefully will be back to work soon. I have been walking as much as possible - today I walked around 3 stores and also around the block with my dog. I've got just over 4,000 steps for the day on my fitbit which is the most I've done in weeks! (For comparison's sake, yesterday I walked around the block and around one store and I had 2,200 steps for the day.)

I'm getting excited for eating again, even if it's just broth and jello to start with. I have a pile of tummy-friendly foods ready to go and a shopping list for more (I need to get eggs, almond milk, and a few other things). I'm feeling good, like I'm ready to eat again. I just hope my guts are on board.
 
Not sure if peas are fodmap safe
Ds tried ripple original
Yellow pea milk
Sounds gross but
Protein and basically tasteless so great on cereal
Similar to real cow's milk
He thought almond and all other but milks tasted like vitamin water on cereal ;)
 
Pea milk sounds pretty bad. :p I've done plenty of almond milk in the past - I had recently switched to cashew milk, but it looks like cashews are not FODMAP safe, so I'm going back to almond milk. The Silk brand tastes pretty good and doesn't contain carrageenan so that's what I'm going to go with. I've been lactose intolerant since I was 20 so I'm pretty familiar with all the various milk substitutes at this point.

Got some good news this morning! My short-term disability pay was finally approved, so I get paid for the time that I've been off of work. That's a relief. I mean, I figured I'd get approved, but they were kind of dragging their feet on it. Now I can relax a bit more.
 
Cat-a-Tonic said:
Pea milk sounds pretty bad. [emoji14] I've done plenty of almond milk in the past - I had recently switched to cashew milk, but it looks like cashews are not FODMAP safe, so I'm going back to almond milk. The Silk brand tastes pretty good and doesn't contain carrageenan so that's what I'm going to go with. I've been lactose intolerant since I was 20 so I'm pretty familiar with all the various milk substitutes at this point.

Got some good news this morning! My short-term disability pay was finally approved, so I get paid for the time that I've been off of work. That's a relief. I mean, I figured I'd get approved, but they were kind of dragging their feet on it. Now I can relax a bit more.
Click to expand...
That is great news, Cat.
 
Thanks, Ron. They're paying me short term disability thru Sept 13th so I just have to get back to work by the 14th. I think I can do that. Every day I've felt a little bit better, even with tapering my pred down (I went from 40 mg to 35 and now to 30 and still doing okay). The big test will be when I start introducing foods, tomorrow. If I can manage to eat without too many issues then I'm sure I can get back to work by the 14th.
 
Today seems to be the day where everything goes smoothly. I am almost out of pred because my taper ended up being extended (per my GI, I stayed on 40 mg a few days longer than originally instructed, and I'm tapering by 5 mg at a time instead of by 10). So I currently have enough pred to get me through tomorrow and that's it. Was slightly worried about that. Called my GI's office first thing this morning and left a message saying I need more. It's not even 3 hours later and there's already a refill waiting for me at the pharmacy. Phew! Between getting more pred and getting my short term disability approved, it's already a good day.

I just have one thing left on my to-do list and that's to get ahold of a lady at work with some questions about paperwork for the time that I've been off of work. I left her a voicemail so hopefully she gets back to me soon. Aside from that, I just have to pick up my pred and make my jello for tomorrow and I'm set! Things are coming together!
 
Ohhhhkay. So, I apparently totally lied earlier when I said everything was going smoothly. I went to get my pred and also to get more broth - the broth I bought earlier has onion in it. I went to the grocery store and got my broth, my car was a little funny about starting as I was leaving the grocery store but I figured maybe that's just because it was so hot out today. I stopped at the bank to deposit a check before going to the pharmacy to get my pred... and my car wouldn't start. It died in the bank parking lot. Dead, wouldn't turn over, wouldn't even try to start. Ughhh.

So I called a tow truck and waited a long time for it to come and had it towed to a garage. They looked at it and it's the starter and going to cost like $400 because my car is Japanese and apparently the starter is Japanese and is out of stock across the entire state and they have to special order it from Illinois. Double ugghhh. It'll be fixed tomorrow. And now I get to use the money that my parents gave me for Vivonex, to pay to fix my car. Sometimes when it rains it pours! I am not happy. Oh, and I left my onion-free broth in the car. Of course I did. So tonight hubby gets to take me to pick up my pred. I'm just going to drink the *$%#^ onion-containing broth tomorrow, I don't care anymore, I'm just done with this day.

I'm trying to be positive though. My car is 15 years old and the starter lasted that long, and I wasn't in a rush to get anywhere and I was in a safe place (they let me hang out in the air conditioned bank until the tow truck arrived). So there's that. It was still a pretty crappy few hours there, though, with waiting for the tow truck and waiting for my car to be assessed at the repair shop. I didn't have any Vivonex with me so I got really shaky and hungry. Now I have to kind of guzzle Vivonex for the rest of the day to make up that deficit. Fun.
 
Ok, first allow yourself to be really :mad2: .
Then put some clear alcohol beverage in your Vivonex. I am sure that it will help! :drink:
 
Hah, I would love to, but for one I don't think it'd improve the taste of Vivonex, and also I don't think it'd help my guts any. Very tempted though! I'm just gonna start with broth and jello and eventually work my way up to liquor. :p Thank you for the humor, I needed that today!
 
I had a little jello today. Turns out I only needed a little - I felt super full right away! I think my stomach has shrunk significantly during the time that I've been on EEN. Well, that's good to know. Later today I'm going to try broth, and now I know I only need to heat up a little bit. If broth today goes okay then tomorrow I'm going to try a very small bit of rice (like a couple spoonfuls) in broth tomorrow.

MLP talked earlier about treating yourself when you're on EEN and I've definitely taken that to heart (although I don't need much excuse to treat myself!). I bought myself a super cute new mug to drink my broth out of, it looks like a cute fox. I'm excited to have some broth in my new mug later today.

I also got a call from my short-term disability insurance and they've mailed me a check. That'll be a big relief. I'm using the money that my parents gave me for the Vivonex to fix my car, and I'm sure I'll be getting a hefty bill for my hospitalization even after insurance. So any money is good right now! It's so expensive being sick and needing car repairs are just frosting on that crappy cake. :p
 
I think the jello is giving me a bit of watery diarrhea. I had one episode of watery d yesterday shortly after eating my jello, and one again today, also shortly after eating jello. Not sure if it's just too sugary for me right now or what. So I'm going to back off the jello and eat less sugary things. Right now I'm having chicken broth with GF pasta (normally gluten isn't an issue for me, but I'm trying to stick to low-FODMAPs as I transition back to food, so I'm giving GF pasta a try). So far so good. I had some mid-abdominal pains earlier, possibly from the potato chips that I had? I tried to chew them super well but maybe there were a few chunks of chip that passed through a bad area, I don't know. I bought a brand-new journal online so I'm journaling everything I'm eating and how I'm feeling, where my weight is at and how many bathroom trips, etc. Hopefully that'll help me figure things out, well I guess it already has with the jello!

I think I'm going back to work next week Wednesday. That's the date that my GP put down as when I should be able to work again, and that's when my short-term disability is paid up through. So I'm going to aim for that. It's a bit scary, I haven't been to work in weeks and I'm sure there are about 10 million emails waiting for me! Eek! If I work next week Weds - Fri, I might get through one tenth of my emails. :p It'll be good to get back to it, though. I think that'll help me feel more normal and human.

I also got my car fixed so I'm happy to have transportation again. I see that soba/buckwheat noodles are allowed on low-FODMAP, so I might meander around the Asian grocery store this afternoon and shop for noodles.
 
This flare is definitely going away. I was constipated this morning!! That hasn't happened in months. I had a bit of an upset tummy feeling yesterday so I took a zofran. Just one. When I'm in remission, one zofran is sometimes enough to constipate me. But I figured, I'm still flaring, so one zofran isn't going to do anything to my stool consistency or transit time right now. Guess I was wrong! I had a very hard stool this morning, actually gave myself a new small fissure in the process. So, I think I need to have a little bit of fiber. I'm going to try like a half-dose of psyllium and see how that goes. Or maybe a quarter dose. I don't want to do too much fiber at first. I think I'll try a quarter dose in the morning and if that goes well then another quarter dose in the evening, that sounds like a good plan.

Pred is going well, it's clearly working, but I'm also well into the side effects now. I haven't slept much for the past 3 nights in a row. Insomnia has been quite bad. My appetite is also huge so I'm being diligent about tracking what I'm eating. I did gain back 2 lbs! But I don't want to gain too much - the first time I was on Entocort, I had lost about 20 lbs over the course of a year and I gained back 25ish lbs in 7 months on Entocort. I don't want to gain back more than I lost, again, so I'm being careful.

All in all I'm doing okay. Getting stronger and better day by day. Planning to go back to work on Wednesday which is a bit scary - I just need to figure out a way to get some actual sleep before then! I also see my GI on Wednesday so I'm going to ask him many questions including I'm going to ask what my options are for sleep aids. I currently take 25 mg amitriptyline at night to help prevent migraines, and that normally does help me sleep, but it's got nothing on pred so I need something else/stronger.
 
A slightly frustrating GI visit today. I was telling him about my flare and hospitalization, and sometimes that stuff is a little hard to talk about. I get emotional. I wasn't crying, but I got a little misty. He asked me, "Why are you getting emotional?" I burst into tears and said, "Because I've been ill for 7 years and I'm frustrated! And this has been the worst flare I've had and that's scary!" I think he got the point. He said he just wants to help me.

The plan is to taper off of pred. I did mention LDN to him - he didn't say no and he didn't say yes. I did print off a report from NIH showing that LDN shows a lot of promise for inducing/maintaining remission in IBD. He kept the printout and is going to do some more research into it. I'm a bit hopeful - he didn't say no, and I think the research on LDN is pretty positive stuff. Low risk of mild side effects, no really big risks, and a lot of promise for IBD. He's going to call me back when he decides whether or not I can try LDN. So I'm nervously waiting now. I know Lialda isn't enough to keep me in remission anymore and I feel like LDN could be a really good thing for me. I really want my GI to say yes, I can try it.

We did cancel the MRE. He didn't fight me at all on that. He did say, that next time I flare, let's do the MRE first and then put me on steroids afterwards. I was like, cool, that's great, IF you can actually get the MRE scheduled in a timely fashion. I was supposed to have this MRE weeks ago, it's pointless now. Just more frustration.

I went back to work today which is going to be a nice distraction because I don't just want to be home doing nothing and waiting for a call back about LDN. Work was super busy today because I had several hundred emails to go through and a ton of other stuff to do. Everybody was happy to see me, though, and I was happy to be back. Working makes me feel normal and human. I'm working Wed-Fri this week and back to full-time next week. Hopefully the flare doesn't come roaring back about that, hopefully I can just work and be okay. And get on LDN.
 
Did he mention any other options Cat?? 6MP or MTX or something to prevent a flare?

We asked about LDN too but our GI has not had any success with it. She also said there have only been a few studies so far. But it's worth a shot if you can get it.
 
He said no biologics and no immunosuppressants, so MTX and 6MP would be out. I'll likely either stay on Lialda (I've tried most of the other mesalamine formulations at this point) or go on LDN. I'd way rather try LDN than stick with the status quo. He did seem to have an open mind about LDN so I'm hoping!
 
Does he have any idea why they can't find inflammation? You have such severe symptoms. I bet if they could find it, you'd be on immunosuppressants.

Well, hopefully LDN will do the trick. I'd stay on the Lialda too if it does not interact (and I don't think it does) -- it won't hurt and might help.
 
Just throwing this out there but have you seen a Rheumo or immunologist ?
I ask because SpA is known to cause sub clinical gut inflammation and other parents have been told probable Ibd but nothing was found inflammation wise - only it was another immune disorder ( bechets for one )
Meaning there are a lot of other disorders that can cause Gi stuff that maybe are under other specialists and your Gi isn't aware of
 
I know I've already suggested the SpA idea, but seeing a rheumatologist and immunologist is a good idea. It seems like you have already been worked up by GI thoroughly, and a different perspective may help figure this out.
 
I've seen a rheumatologist but he was absolutely worthless. I went to him for my hip arthritis. He ran some tests and said he couldn't find anything wrong, and told me to go back to my primary care doc, but in his notes he wrote that it's probable inflammatory arthritis. He did a couple steroid injections on my bad hip, which at first made me feel a lot worse. When I called him asking why that might be, he again said he has no idea and again tried to refer me back to my PCP. Ugh. That was it, I was done with that idiot. I probably should see a new rheumatologist at some point, although right now I'm sort of fatigued on doctors.

I don't think it's Behcet's, because I know that genital lesions are a hallmark of that illness, and I don't have anything like that. I also don't think it's SpA because my hip pain is usually not very bad and I don't have anything like stiffness in the mornings or any other signs of it. And I've been tested for a lot of other stuff, like RA and Lupus and Addison's.

If it were up to my GP, I'd be on Humira. :p GI and GP have rather differing styles. GP feels it's definitely IBD and wants to treat it as such. GI is much more conservative and hesitant to treat it as a certain illness without absolute proof. I can respect that, but at the same time I don't always agree with him. Not that I want to be on Humira, but I want to be on more than just Lialda (and yes, my plan is to stay on it even if I go on LDN, as I know Lialda does help me somewhat).

I don't know why they can't find inflammation. I have an aunt whose story is eerily similar to mine (she's related by marriage, not blood, so it's not a family thing). She had symptoms for 30+ years, had many many tests, nothing was ever found. Finally in her early 50s they found scar tissue during a colonoscopy and diagnosed her with Crohn's. I'm afraid that's going to be me, too, just suffering undiagnosed for decades before they find it. My aunt is a very strong person and is my role model, but at the same time I don't want my story to mirror hers!

Next time I flare, I might just ask for exploratory laprascopy. They've scoped me up and down but haven't looked so much at the outside of my bowels. That's just my latest thought.
 
I am not saying bechets ( just an example ) ---that there are a lot of other things that can cause Gi issues as an extra that you or us might not be aware of
So it could be anything
Sorry you had such a bad Rheumo exp that sounds horrid
 
I think since Humira does come with risks, they would not do without proof of inflammation. And honestly, that makes sense because if you do not have IBD it could make you sicker. Unfortunately, that leaves you in a tough place.

Your rheumatology experience is not typical. It is definitely hard to find a good rheumatologist though! The fact that it did not get better with steroid injections suggests osteoarthritis rather than inflammatory arthritis (though of course, you can not respond to steroid shots, especially if the injection is not done well - it should be done with ultrasound guidance).

Also, with steroid shots, sometimes you can have what's called a "cortisone flare" or "steroid hypersensitivity" and the joint can actually get worse for a while before it gets better. This happens to my younger daughter with every single steroid shot!

(Though it doesn't really matter if it's not bothering you right now, that's just why the steroid shots might not have helped.).
 
Maya, I got worse at first after the steroid injections, then felt better for a few months. Could even jog a little bit again! But after maybe 4-5 months, I went back to what I'd call my baseline. Which is, not a lot of pain as long as I exercise my hips regularly with low-impact exercise, more pain if I do high-impact exercise or if it's bitterly cold/very snowy out. So it sounds like what I experienced is similar to your daughter? I didn't like feeling worse at first, and feeling good didn't last very long, so I don't think I'd go for another steroid shot unless my hip gets significantly worse.

(To specify, I have arthritis in both hips, but the right hip has always been worse in terms of pain, so that's the hip that got the injections. The left hip usually doesn't bother me too much.)

He did not do the steroid injections with precision, either. There was no ultrasound. He just sort of jammed the needle into my hip, it really hurt!

And yeah, my GP thinks it's osteo-arthritis. The rheumy thought inflammatory. It's definitely arthritis, it's just another fun not fully diagnosed health issue of mine. None of my conditions are fully diagnosed! My GI thinks the arthritis is due to steroids, I think it could be due to the presumed IBD. I don't know.
 
Maya, I got worse at first after the steroid injections, then felt better for a few months. Could even jog a little bit again! But after maybe 4-5 months, I went back to what I'd call my baseline. Which is, not a lot of pain as long as I exercise my hips regularly with low-impact exercise, more pain if I do high-impact exercise or if it's bitterly cold/very snowy out. So it sounds like what I experienced is similar to your daughter?
Click to expand...

That's pretty typical of arthritis. If it gets worse again, then I'd ask for an MRI before you do steroid shots. It would tell you if you have osteoarthritis or SpA. If you have SpA, that may help in terms of an IBD diagnosis.

My daughter is absolutely miserable for an entire week after a steroid shot in her hip. Then she magically gets better. It's no fun, but she has enough trouble walking/standing that a month or two of relief is worth the painful week.

The shot actually should not be that painful. They should inject Lidocaine or an anesthetic first (which burns) but that should be most of the pain. Your hip should be numb by the time they inject the steroid. And it should always be done under ultrasound guidance!

Sorry to hear you had a bad experience -- if you have to do it again, definitely go to someone else!
 
That terrible rheumatologist, he did do an MRI before giving me the steroid shots. :p It was in the MRI notes that he wrote that it's probable inflammatory arthritis. And as I recall, I don't think he did any lidocaine or anything to numb my hip. This was a few years ago, maybe 2012 I think? So my memory of it is a bit fuzzy. I do seem to recall though that he just basically jammed the steroid injections in (he did 2 for some reason, both in the same hip) and no numbing beforehand. I don't think he knew at all what he was doing.

I'm afraid the arthritis might get worse again this winter - that's pretty common for me. When it snows, my hip hurts. If it snows a lot, both hips hurt. And if we get a blizzard then that whole area hurts - I recall a few years ago, we had a blizzard with about 18 inches of snow, and for hours before the storm hit I had awful pain in both hips and lower back. That was the worst! And, supposedly this year we are supposed to have a colder and snowier winter than usual, ugh. So, we'll see. If it's bad this winter then I might ask my GP for a referral to a new rheumatologist.
 
Speaking of idiots who don't know what they're doing... I had sent a form for FMLA to my GP's office. My workplace wanted a new FMLA form filled out for the time that I was out of work due to this flare. But, my GP's CMA wrote on the form that I was not hospitalized. Um, yes, I was, it should be clear as day in my records. So I emailed my GP asking him to get the form corrected. Work wants the form back by Monday, hah, good luck with that. Ugh. My GP is very good but apparently at least one person on his staff is not so much.

If worse comes to worse, my boss can vouch for me, she visited me in the hospital. It's just ridiculous though. When you're sick, you shouldn't have to go through so much rigamarole (I have no idea how to spell that). There's so much paperwork and legwork involved with being ill, it's unacceptable.
 
Big hugs
Had similar issued last time Ds was hospitalized
They put the leave wasn't needed in a continous manner ( umm he was in the hospital in a continuos manner )
It got fixed but was a nightmare for a few days
 

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