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Crohn's Disease Forum » Support Forum » Vent Away » Another day, another trip to the ER


06-13-2013, 02:49 PM   #1
Ribo
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Another day, another trip to the ER

Frustrating one this time. I've learned enough about my condition that sometimes I need a pain reliever - Percocet - to cut the edge of the pain and stay ahead of my 'pain curve.' Not every day, but maybe every two, three, four days. It varies week to week.

Started seeing the need on Monday but was down to my last pill. Call thenPCP who refers me to the GI for a new prescription. GI points me back to PCP. I proceed to chase back and forth.

Eventually the PCP calls Tuesday afternoon and says come in around 4 PM. By the time I get there of course I'm at a 7 on the pain scale and need something that will act faster and more powerful than a Percocet. They turn me around and send me to the ER with a nice note that they know my case, I'm at a seven and oh by the way, hypoactive bowel sounds indicating possible obstruction.

Seven hours later I finally get home after some IV fluids, zofran and morphine injections, plus a negative CT scan. But I'm at least feeling better, sharpness of the pain is cut and I can manage it again.

Of course Wednesday the GI's office calls to come pick up a new prescription for Percocet. Which we do, 'cause they definitely help me manage the situation and I figure I should get it while I can for next time.

Just frustrating, but everything worked out and at least no hospital admission this time.
06-13-2013, 04:49 PM   #2
Jmrogers4
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Glad you are feeling better
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
06-14-2013, 04:00 PM   #3
CrohnsChicago
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Glad it all worked out and you feel somewhat better. Take care of yourself!
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Crohn's-Colitis May 2012
Current Meds:
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Prednisone/ Entocort / Flagyl
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Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

07-26-2013, 02:32 AM   #4
Ribo
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Well, another hospital visit today. Started having some severe pain last night around 6:00 PM accompanied by nausea, a little heaving, bloating, and increased HERD pain; and took a Percocet to try and get it under control. When I woke up this morning (Thursday that is) the pain was bad but of course I had work to do so I had to (a) swing by my office followed by a client visit, and (b) skip another Percocet since I would be driving.

As way of background, just started a taper on Prednisone, dropping from 40 to 35 mg per day about three days ago.

Of course by mid-morning I was in real pain and on the phone with the GI's office. Waiting for a call back, I spoke t my wife who (thankfully) was adamant that I be smart and head to the ER.

So off I went. Apparently Thursday mornings are slow days, because I basically went right into a treatment room. Zofran and morphine got me turned around a bit, and them Xrays and CT scan later revealed no blockage (which was what I was suspecting, the whole situation to me was partial- obstruction on it's feel).

ER doc said he was actually surprised, but it w's good news. Which it is, of course, but frustrating to once again have no real cause revealed.

The great thing was the ER doc consulted with the GI immediately to decide on a course of action. ER was leaning toward keeping me for observation but GI suspected it was a reaction to the taper. So, they gave me a Peed injection, scrip for more Percocet and sent me home after about six hours.

Question now though is this: GI has now increased my Prednisone to 60mg per day (up from 40mg where it was previously) as well as a new prescription that I haven't seen yet. I'll pot what the new scrip is once I get it in the morning.

I'm curious of anyone has thoughts on the Pred increase - that seems weird to me, but it's my first time on the rodeo so maybe this is a normal approach? The goal of the taper previously had been to wean the Pred in preparation for getting me not a course of Remicade.

So, that's the latest update. Thoughts would be welcome!
07-26-2013, 09:09 AM   #5
CrohnsChicago
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Thank goodness you had no blockage.


It seems that your doctor believes that the dosage you were on may not have been enough to get things under control.

This is quite common if you are repeatedly experiencing symptoms. Sometimes the dosage you were on was not necessarily enough. That's the thing about treating IBD, it is very much a trial and error process. With proper steroid treatment, most people tend to see their symptoms fade between the first few days or somewhere during the tapering period. If this does not happen, the doctor needs to reassess your treatment plan.

Often times doctors will either up your pred dosage, or they will extend the length of time that you are on a particular dosage (do a VERY SLOW taper). It all really just depends on the doctor's preference and your symptoms/how difficult they are to manage. Eventually if the prednisone does not work in this fashion they will resort to the next level of treatment like Imuran/6-MP/Humira/Remicade, etc or any combination of these medications. But they want to see how your body responds to steroid treatment before they put you on heavier, long-term medication.
07-26-2013, 10:40 AM   #6
Aphrodite_x
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Thats a lot of steroids! Are you feeling any better today?

Beware of heart palps etc being on 60mg. I ended up on hospital with them while I was on 40mg, and was told they wouldnt give me anymore because 40mg is supposed to be the maximum for any one person. Guess that was duff gen!

Hopefully you feel a bit better soon.
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07-26-2013, 11:14 AM   #7
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When I asked to get a new prescription of percecet the doctor said no cause he said that it can be an addictive drug. Already knowing that I told him that I had spaced it out and made a perscription of 20 tablets last two months. He still said no. Well I ended up in the hospital again because the pain got really bad and ended up getting admitted for a third time this summer. Any ideas on what to do for the pain?
07-26-2013, 07:05 PM   #8
Ribo
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When I asked to get a new prescription of percecet the doctor said no cause he said that it can be an addictive drug. Already knowing that I told him that I had spaced it out and made a perscription of 20 tablets last two months. He still said no. Well I ended up in the hospital again because the pain got really bad and ended up getting admitted for a third time this summer. Any ideas on what to do for the pain?
The GI docs seem to be a bit averse to prescribing pain meds until they really know what is going on. The last time i got a bit of a runaround between my GI and my PCP. It got to the point that I was in to see the PCP about pain relief specifically (they wanted to see me before prescribing, seems reasonable) but i had reached the point where instead they sent me directly to the ER because i was in such distress. That week both docs prescribed percocet.
07-26-2013, 07:08 PM   #9
Ribo
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By the way, the new scrip is for something called Mercaptopurine, which from what i am reading is a pretty serious drug. A little scary to be honest.

What sort of sucks is I'm not feeling ay better today, but i did just get the new dosage of prednisone and this new stuff started, so I'm hoping in the next day or two to start feeling better. For the moment I'm still dealing with pretty good pain levels. The percocet helps but it is still pretty intense as I get close to the next dosage.
07-27-2013, 02:37 PM   #10
CrohnsChicago
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I currently take mercaptopurine (6-mp) I have been on it for 5 months now with no side effects. I was totally scared about taking the drug at first (I cried about it a lot before I started it and when I first started it) but so far I don't have any complaints about it.

It is an immune suppressor so you need to be careful about washing your hands and being around sick people or getting injured but like I told someone else on the forum you don't have to live in a plastic bubble with this drug. You also need to take care with protecting your skin in the sun, use sunblock and shade yourself whenever possible. And make sure to drink Plenty of water every day to help you break down the medication in your body.

Also remember this.....the side effects of the drug may sound scary....but patients with IBD are taking FAR less dosage than patients who take it for leukemia or other cancers. They are at a much higher risk of experiencing the side effects than we are.

Also trying a pill form of treatment to me sounds much more appealing than jumping right to humira or remicade which requires injections and has more side effects up front. I would rather see if 6-mp works for me first before doing anything heavier.

I hope you figure out a treatment plan that works for you. And let us know how it goes.

Last edited by CrohnsChicago; 07-27-2013 at 02:58 PM.
07-30-2013, 07:57 AM   #11
Ribo
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First off, thanks Chicago - that makes me feel better.

Unfortunately things got worse and I was once again admitted to the hospital through the ER on Saturday. Here it is on Tuesday and I'm up and down. Diagnosis based on CT Scan is either another SBO or small bowel thickening from the Crohn's. GI thinks the latter, surgeons say the former, PCP seems to be leaning toward the GI diagnosis.

Treatment is basically NPO for a few days, now I'm on liquid diet and they're treating me with a huge dose of intravenous steroids - 180 mg per day split among 3 doses. Also continuing with the 6MP, plus a few other things. GI has essentially taken the lead n the treatments, which makes me feel better.

Downside is that, since yesterday morning, everytime I "eat" anything - liquids only of course - I have lots of pain, and end up asking for pain meds. When they give me the pain meds, then the nausea hits again and they end up having to give me phenegryn to handle that. The good part about that, I guess, is then I sleep for a few hours.

This is a first for me, as previously resting the bowel for a few days has resolved things. Makes me worry my CD is becoming more complex or worse or something I guess. This morning I had some Cream of Wheat plus some clear liquids for breakfast, and within ten minutes had a bout of diarrhea on one end and nausea/excess saliva on the other. No vomiting but lots and lots of uncontrolled salivating, which may sound weird but is pretty much what happens to me when my nausea goes wild.

The one concerning thing is lots of blood in my stool, but after being constipated for a few days I know that can happen to me, so it may or may not be a big deal. Only concern is it's quite a lot more than I am used to seeing, and happening more often.

SO, now I wait patiently. Not sure what else they can do for me here if the plan is to keep up the steroids, keep up the 6MP and just wait for it to work. The pain feels manageable with some prescription stuff. I have dilaudid available if I need it, but I suspect I could do just about as well with prescription Percocet and just resting at home.

If it sounds like I'm whining, I probably am. So tired of this situation, frustrated, and really just wish I was resting in my own bed where at least there's a sense of privacy, peace, and quiet.
08-04-2013, 07:57 PM   #12
Ribo
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Just thought I'd pop a quick update. I wound up spending a full week in the hospital with this latest SBO. By the end of the week I was going stir crazy. The last two days was basically having been introduced back onto solids and waiting around for a BM. Eventually I convinced them to release me even though that hadn't happened yet. First thing that happened when got to the house was of course the long awaited movement.

Thank goodness.

Now I'm basically exhausted after a week on my back - no energy, fatigued, just trying to build up energy, but feel so much better just being home. It's amazing how much nicer it is to be in your own home to recover. Easier on the family as well of course, just knowing you're around.

Anyway, going to be taking it easy for a few days, but really nice to be home.
08-04-2013, 08:23 PM   #13
CrohnsChicago
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Oh no

You are really having a rough time of it. I bet the moving around is what helped you pass that anticipated "movement"

Are they working on a new game plan (treatment plan) for you?

Make sure you get PLENTY of rest and allow your body the time it needs to heal.
08-04-2013, 09:32 PM   #14
Ribo
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Yep, there's a plan, or a goal at least. I need to get some of the details when I follow up with GI this week.

His basic plan is to once again taper the Pred down (from my current 60mg/day) over about the next month or so, while at the same time building up the presence of 6MP. I'm taking 150mg / day and GI says it can take 2-3 months form that to really start having an impact.

I've got all my approvals for Remicade to start in September as well, fully paid by insurance through the end of the year (amazingly enough). GI says he sees about an 80% Success rate with this approach.

Only thing I'm not sure of yet is what his plan is to taper. I want t be careful not to rope the Pred too quickly and cause a problem, but at the same time the side effects (insomnia, perspiration, weight gain, etcetera) suck. Course it could be worse, guess haven't had any major issues that others do from Pred, so I really can't complain there.

One question if anyone knows - can either Pred or 6MP cause hair loss? My hair seems to really be thinning all of a sudden, whether just a side effect of all the stress or due to the meds don't have any idea. More curious than anything, I guess I'm hoping it's a medical side effect and there's hope it will stop if/ when I have the medical cocktail fully worked out.

On the plus side, right now I feel pretty good, able to eat and pain is easily manageable with the pain meds. So things could definitely be worse.

Thanks for the support!
08-04-2013, 10:22 PM   #15
CrohnsChicago
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There are a few people on the forum if you search that say they have experienced hair thinning or hair loss on certain immunosuppressors including 6-mp. However it seems like they are few and far between and when they stop the medication their hair seems to eventually come back. 6-MP is technically considered a chemotherapy drug and there are people who may experience hair loss or thinning: http://www.mayoclinic.com/health/dru...N=side-effects

I personally have been on 6-mp for a little over 5 months now and while my hair has always been on the thin and shedding side, I haven't noticed any changes in this aspect/I'm not losing or thinning any more than I normally do.

Stress can definitely lead to hair loss. As can certain vitamin/mineral deficiencies. If you are losing hair though you should talk to your doctor about it so that they can help you try and pinpoint the cause if at all possible and at the very least they will know that you are experiencing some side effect that should be noted.

Glad to hear you are starting to feel better. Being able to eat again and manage pain sounds like a good sign. Good luck with everything!
08-12-2013, 09:15 PM   #16
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I feel you! Percocet always helps me though! I'm actually on tramadol for more everyday relief. That seems to help!
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