Advice Please! Pain management & symptom management

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hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/22/2008 4:37 PM (GMT -7)   
I seem to constantly be bugging you all on this forum. It looks like I can't stay away, lol.

I have tried calling my doctor on this, but she is closed today & my GI hasn't returned my phone calls. I wasn't sure where else to turn, short of going to urgent care & I think that is excessive. I am sure you all have some good advice at how to make this all tolerable.

I started having hip/pelvic/lower back pain yesterday & I thought I would feel better this morning. Needless to say, I haven't felt any better, I just feel worse. The pain has gotten so bad. Yesterday I was thinking maybe I am just twisted & needed an adjustment, so I called the osteo & made an appt., but I can't get in until a week from Monday. I started wondering if this was related to the IBD so I called my GI but she was in procedures today, so the receptionist said that the nurse will call or maybe the GI later this afternoon. No call. Still waiting to hear back on that small bowel series. I already received the bill for the reading, but neither of my doctors will give me the results, even though I know they have them because the receptionist told me they do & the nurse would call me with the results. I am sure if there was something on the SBFT that they would have gotten with me about the results already, so I am not worried like I was. But that doesn't help me out with the pain... So what do I do?

I am having pain in my whole pelvic area, front & back. Groin pain, too. I haven't had much low back pain, this is new. My hips really hurt, too. I have had hip pain before, but the osteo said it was due to losing so much weight & being bony & the pressure on my hip joint was causing bursitis. But it is in both hips now. I am feeling very weak and extremely tired–I spent all day in bed, most of it sleeping. My Darvocet is not helping. I tried doing Yoga thinking that would help. It still hurts.

And I have some tummy grumbling & crampiness. I have so much pressure like I have to go, but with no luck. I don't know if the low fiber, low residue diet is helping or what, but the last couple days I have slowed way down on the BMs, which I figured was good. I only went once yesterday & haven't went at all today. I feel like I have to go, but nothing comes out. And I am very bloated & feel a bit nauseous now. It's only been a little over a day since I went, so I don't know if you would really call it constipation, although that's what it feels like. My husband thinks I should try an enema or something, but I think that is a bit early for that.

So what do I do? What can help relieve this pain, or is this not related to my IBD? What can you do about pressure & bloating? I welcome all advice and thoughts...

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 2/22/2008 4:54 PM (GMT -7)   
I think it is all related. I get hip, pelvic, and low back pain and my GI told me it is more or less referred pain. It sounds to me
like you may have some inflammation going on. It's how I feel when I'm flaring badly.
My worry is, that you are not passing bm's or by the sound of it gas. If this is the case you should go to the ER, and I don't think
that this is excessive. Your darvocet are not working for you. To me it's worth a visit, to 1, help with pain management. 2, get
checked, if it's clear, then good. If it isn't you'll be in the right place for them to get going on IV drug therapy.
Please don't go on the theory that no news is good news, it doesn't always work like that!!
Don't leave yourself in so much pain. Keep us posted...
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/22/2008 5:25 PM (GMT -7)   

Hello,
I have to agree with Vicky, this may be a good time to go to urgent care but I would choose ER as you have a known disease.  Pain is considered an emergency so do not let anyone make you feel like you should not be at the ER.  Remember to advocate for you.

FYI, The Joint Commission has been accrediting hospitals for more than 50 years. Its accreditation is a nationwide seal of approval that indicates a hospital meets high performance standards.  This is the gold standard. Patients who feel they have not been treated according to the standards have the right to send a letter to Joint Commission and each concern is investigated.

Here is the Joint Commission ruling on pain management.............

The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has developed new standards for the assessment and management of pain in accredited hospitals and other health care settings. These standards were endorsed by the American Pain Society. The new standards explicitly acknowledge that pain is a co-existing condition with a number of diseases and injuries, and requires explicit attention. The standards state, "Hospitals, home care agencies, nursing homes, behavioral health facilities, outpatient clinics and health plans will be asked to: recognize the right of patients to appropriate assessment and management of pain; assess the existence and, if so, the nature and intensity of pain in all patients; record the results of the assessment in a way that facilitates regular reassessment and follow-up; determine and assure staff competency in pain assessment and management.

Do not be put off.............you are in pain.  Take care of you.
Hugs

Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/22/2008 5:33 PM (GMT -7)   
The last time I went to the ER, I had a bad experience. I don't want to ever go back. There has to be something else I can do for this pain besides go to the ER....

I can't be obstructed since I had a BM yesterday. So I know that isn't my problem. I just want the pain to go away.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 2/22/2008 6:58 PM (GMT -7)   
Is it the same ER? I've had bad experiences in ERs too, but it reflects mostly on individual doctors. Most are generally quite compassionate. So one bad apple.. Yadda yadda You know.
At this point Urgent care will likely sent you there anyway, but go if you think they can.

Sincerely,
Matthew

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 2/22/2008 8:11 PM (GMT -7)   
Honey, at some point in time we've all had bad experiences with ER"s. It's a good chance that the staff will be completely different.
Please don't lay in pain, when it;s not necessary. I really feel you should be seen. and just remember that last bm, may have been
the last that could get through, just a thought...
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


fuzzyw
Regular Member


Date Joined Feb 2008
Total Posts : 48
   Posted 2/22/2008 8:22 PM (GMT -7)   

Hi hukleberrie...during my 25+ yrs. of severe Crohn's Disease, the symptoms that you are describing were very common for me (I was never in full remission). It definitely sounds like you're having a flare-up. One thing that I need to mention...I had my first resection in '91 & two yrs. later, was diagnosed w/ a partial obstruction & ended up having a sub-total colectomy (90% colon removal). I experienced constipation/diarrhea simultaneously. Then again, severe inflammation in itself can cause your symptoms. I often had terrible hip, lower back spasms & horrific genital pressure. I don't know what drugs you're being treated with. The last drugs that I was on, prior to having an ileostomy, were 6-MP & Remicade. These drugs did help but they're very potent & after 3 yrs.. I was diagnosed w/ a rare eye cancer. Due to this diagnosis, I had to stop the drugs. I've had an ileostomy for just shy of 2 yrs. & was doing pretty well until 2 weeks ago when I experienced severe colorectal pain. Remarkably, prescription ibuprofen (800mg) seemed to help the pain...I think better than had I taken a narcotic. Regardless of what's going on, I'd go the ER route. I belong to an HMO & while I ended up being seen by a Primary Care Doctor & put on Cipro (which eventually fixed the problem...it was assumed to be a bacterial infection), had the bloodwork & exam shown anything thought to be more serious, I would've been sent to the ER, in Boston. I'm fortunate to live in a state (MA) which has some of the nation's best hospitals/medical care. If possible, I suggest that you go to an ER located at a top-rated hospital as opposed to a local community hospital. Lastly, I'd consider switching GI's if you're not receiving same-day callbacks. Please keep us up-to-date. Thinking of you...Fuzzy sad


Fuzzy:
25+ Crohn's Disease Sufferer; 2yr. Ostomate (ileostomy)
2yr. Remission for Conjunctival Malignant Melanoma
Drugs:
Ciprofloxacin as needed; Children's Vitamin/B-12 Supplement
Xanax as needed; Clonazepam 3x daily; Levothyroxin for Hypothyroidism
 
Several Eye medications used to help prevent further damage resulting from treatment for eye cancer
(former 6-MP/Remicade user - ceased due to cancer diagnosis)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/22/2008 10:54 PM (GMT -7)   

I am sorry you have had bad experiences in the ER, I remember reading your posts but please don't suffer as I hate to think of you being in pain all week-end.

Which there was more I could offer.  Prayers for your pain to diminish.

Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/23/2008 4:17 AM (GMT -7)   
It can't be an obstruction. I am sure it would be much worse. I think the pain is at a 7 or 8. If I move around I can find a comfy spot & feel tolerable for a few minutes, then it comes back. All I want to do is sleep.

I don't have insurance. I can't afford another $3,000 bill. And the last time I was at the ER with dehydration & low potassium & sinusitis & migraine because I couldn't hold my head up they automatically thought I was on drugs or something & that really offended me. Then they wouldn't even look into the GI issue at all. They just checked my heart, gave me IV with potassium & did a CT scan of my head & sent me home. So if I go now, that's all they are going to do again & it's not worth the $.

I have pressure like when your in labor & the baby's head moves down. That's the pressure I feel. I have tried & tried to have a BM with no results. I even tried with the finger to see if something was there that couldn't come out but nothing. I did pass gas 2 times yesterday, so it can't be an obstruction.

I still don't really know if it's CD or UC. The GI said it is for sure IBD, but she needed to do more tests to find out which one. She was very compassionate & took a lot of time with me, so I really like her. I just don't understand why I am not getting a call back... And the SBFT test probably didn't show anything anyway because there was that blob of barium there & the radiologist said he had a hard time seeing so the test was inconclusive as to which IBD I had. I am sure if there was something on that test that it would have shown up. And I am sure they would have told me the results by now since it has been 9 days.

I just thought maybe you all would have some ideas of how to deal with the pain or any homeopathic therapies I could do.... I can't afford another trip to the ER....

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/23/2008 4:22 AM (GMT -7)   
My husband wants to do an enema... Should I?

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/23/2008 7:04 AM (GMT -7)   
I am not vomiting either, so that's good. But this pain is not good. I had thought about calling the emergency # for the gastro, but it's not an emergency, so I guess I am going to go to urgent care. I don't want to because I think that they don't know as much as my gastro, but I am not sure what else to do. I will not go to the ER & I am lost. I will post when I get back.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/23/2008 11:20 AM (GMT -7)   
That was a waste of time. They tested my urine for infection, nothing, just high pH, which is normal for me. He said could be IBD (or IBS, lol) causing it due to constipation, so go home & take maalox & if that doesn't work try an enema. So I guess I just have to suffer. I'm annoyed & po'ed. Why can't anyone help me feel better????

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 2/23/2008 4:31 PM (GMT -7)   
I'm so sorry to hear that. Constipation would'nt be high on my list, although it's a possibility. I think rather than doing
an enema, I think I would try something that will help clear you from top to bottom. If you can tolerate it, they now sell
miralax OTC, it's a little more potent than maalox.
I hope your problem solves itself quickly, with no other serious problems. Good luck...
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/23/2008 5:01 PM (GMT -7)   
Vicky, what do you think it could be?

I started thinking he was right, that it was just constipation. I took a couple stool softeners. I am kinda afraid of what could happen when it lets loose, lol.

I still have that milk of magnesia or whatever they give you after the SBFT, which she said she didn't think I needed, (which I didn't, the barium cleared out of me by the next morning,) so maybe I should try that. It hurts & is really uncomfortable.

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 2/23/2008 9:28 PM (GMT -7)   
Honey I really don't know what it is, I'd only be guessing. If you can eat and drink without vomiting, then that would
indicate that you don't have a obstruction. However, there could be inflammation that's enough to stop you going
normally. My concern is that you've now been feeling like this for a while and things are not changing for you, this
isn't normal. Try whatever you have handy, IF you think you are constipated, IF after that, you still feel the same
or worse, please see someone who knows what they're doing. Keep us posted...
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 2/23/2008 9:37 PM (GMT -7)   
BTW, I know its not really a good idea, but many community hospitals will forgive you your debt if you are uninsured ( how do you think I coped with all those kidneystone trips?LOL.). Just go to the blasted ER, only X-rays & the like are going to find you your answers.

Matthew

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/24/2008 7:24 AM (GMT -7)   
Okay, here's new info. I woke up at 4:30 this morning by a noisy tummy. It was so loud, it woke me up! My hips & pelvis & low abd/low back were hurting. So I got up & took another Darvocet. (helps only slightly). I went back to sleep & woke up a half an hour later & finally had to go! This stool was hard, but passed easily. Then back to bed, then back up again. This time softer. Then again, this time I know it was what I ate at dinner last night (I said screw it & ate a burger with sesame seeds on the bun - I know, I know. NO SEEDS, but I have been following that diet to a T & just needed a little break....) so I know I am all cleaned out. So constipation, if that's what it was, is over. But, I am still hurting!!! So now what? It wasn't obstruction, it wasn't constipation, so what is causing the pain?

Matthew, I was just at the only local hospital in the county (don't know if it is really a "community" hospital) & they sent me a big fat bill for my time in there with dehydration/low potassium/migraine/sinusitis. $3200 for 7 hours. Grrrr.... And when I was there, they said I would have to get with my GI doctor about my weight loss & GI issue. They didn't even want to talk to me about that. So, going to the ER and Urgent Care are useless for me. I will always just wait to get with my PCP or GI. How did you get your debt forgiven? Did you have to bug them about it?

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 2/24/2008 8:53 AM (GMT -7)   
Just go to the Billing Office & explain your situation as best you can. Most Non-private hospitals have this option. Or make some billing arrangement. Remember, if you only pay 20-40 bucks a month, they will STILL treat you.
I still think you are basing all ER trips from ONE really bad one. But like we've all found, you can go two days in a week & find a totally different experience..

Matthew

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 2/24/2008 3:34 PM (GMT -7)   
I would love to have you go into the ER and just make sure it's not something serious. Explain that you have no insurance and ask if there is some assistance. Take care of yourself!

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/24/2008 4:04 PM (GMT -7)   
I know it can't be an obstruction because I have had 4 BMs today. So it can't be anything serious.

So I don't know what at all it could be, really, just pain from the inflammation of my colon? I do know for sure that I have ulcers & inflammation in my colon. Just still don't know about the small bowel, but the radiologist said it looked okay, what he could see due to that pooling of barium blocking his view, so he couldn't say for sure between CD & UC. So, that to me means that the small bowel is fine & the only inflammation is in my large bowel. Would that cause these symptoms?

I am having the problems right now of low back pain & that pressure feeling in my low abdomen. I keep trying to go, but only a small dark stringy piece came out this last time, but I went earlier today, so I am sure all is well. Otherwise, I would be worried about an obstruction. Especially since I was having very thin, long soft BMs before the abrupt stopping of having them, but now that I am going again, I know it can't be obstruction, and there is no abscess or anything like that, so I don't thing there is an emergency. It's nothing serious, just pain.

I am just going to call my GI in the morning about this pain, that's all.

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 2/24/2008 4:55 PM (GMT -7)   
I wish you luck!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


falling apart in Arkansas
Regular Member


Date Joined Feb 2008
Total Posts : 32
   Posted 2/24/2008 7:29 PM (GMT -7)   
I feel for u...........I just had a prob. like you are explaining. Two weeks ago was having alot of pain when having bowel movenent, then suddenly just stoped having movement all together. Call the GI on call. he told me he thought I was not taking enough Endacort and had me increase my dose. The next day hurting bad and felt so bloated. Went to GI he had me do the Xray bit and told me I had an obstruction, was backed all the way up. Had me get 2 fleets and 2 10oz botles of Mag sultrate. I did both fleets and one 10 oz bottle......nothing. He had me to go to the ER. By this time I was so nauseated I could not even drink fluids (oh by the way, for the past week I was on liquids also) I layed in the ER for 5 hrs. They did X-rays , but said I was not too bad. They did no blood work, no IV, and nothing for pain. Finnaly I asked for something for the pain and was told that the narcodicts would constipate me worse, but I told them I needed something. They did give me Darvocet, not that it helped. They did a soap suds enema and sent me home. The Gi doctor had me to get Golytly and drink half of it when I got home. Well the next day i had a small movenent, but the next day was back to where I was the day before. Called GI he said drink more laxitives. I was so sick I could not drink anymore. By Monday the fallowing week so weak I passed out trying to get to the bathroom. This is when I decided I was going to the ER and demand that they admit me. They did.........tests, after test found nothing. Sent me home I am now drinking 8 oz of mag sultrate a day, 2 doses of medamusil. At first he was concerned of scar tissue fron wher I had my resection, but that was not bad. It is so frustrating sometimes..........but I have learned over the past yrs to think of me first. If that means I have to demand answers, then so be it. I don't think they understand the pain we go through...........so do what u have to to get feeling better. The Magnesium sultrate might help for a temp fix. I would ask your doctor.
Sorry I wrote a story, I hope some of what I said helps. Catherine
Diagnoced with Crohn's in 1999.  Battling with it ever since.
 
 
 
 


falling apart in Arkansas
Regular Member


Date Joined Feb 2008
Total Posts : 32
   Posted 2/24/2008 7:34 PM (GMT -7)   
Wanted to correct my wording on last post........I did not have an obsruction. Had an impacted bowel. Sorry when reread it found that I had it wrong
Diagnoced with Crohn's in 1999.  Battling with it ever since.
 
 
 
 


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 2/24/2008 7:55 PM (GMT -7)   
Catherine,

Thanks so much for your post. It makes me realize maybe I don't have it so bad. I seem to be whining an awful lot lately.

Anyway, I finally did have a bm & I still have the same pain. I did get cleaned out because I saw the sesame seeds from dinner just a few hours before, so I know I am not impacted. Can't be an obstruction either. So I don't think there can be any other emergency or anything in need of urgent care, I just need to get rid of the pain. I am currently on Darvocet & they don't work on this pain...

Thanks for the words of encouragement & empowerment. I now realize how I must be forceful about my healthcare. It's just really hard when you are wore-out & sick to demand the care you feel entitled to...

fuzzyw
Regular Member


Date Joined Feb 2008
Total Posts : 48
   Posted 2/24/2008 9:13 PM (GMT -7)   
Hi hukleberrie...I'm sorry but I just want to SCREAM reading through this topic! If you are in moderate to severe pain then you need to get checked-out by a professional & not cause further damage by trying all these OTC remedies  nono . It sounds like typical IBD inflammation but could also be a bacterial infection (I have an ileostomy & still developed an infection in my 10%colon/rectum...I recently ended a 10 day course of Cipro for this (& it was prescribed by a Primary Care Doctor, not my GI nor my usual PCP)). Also, the only drug you've mentioned is Darvocet: I don't know what the reason is that you're taking this but do know that it can cause upset to the GI tract. Are you on any drugs for the IBD? Prednisone? My nephew is uninsured & has been treated for IBD...he just doesn't follow-through w/ the treatments & instead, ends up in the ER every so often. In my state, we have what's called MassHealth...this covers non-working, uninsured people. My nephew has access to all the top doctors, in the best hospitals & only pays $1 for his prescriptions. I'm on disability, pay for basic Medicare + Premium HMO coverage (I barely get by but need the extra insurance). I don't know your situation, as far as work & the programs offered in your state but you can't be turned away from an ER for lack of insurance. Regardless...no, the ER isn't the best place to get treatment for IBD as they don't know your medical history & aren't treating you on a regular basis. See your GI, ASAP (PCP if he/she's readily available & knows how to treat IBD). Sounds like you need a lower GI & certainly, a colonoscopy. When is the last time that you had one? Please seek treatment...let the bills pile up...like Mathew said, there's always a way to work out the financial part. Do you know if you're eligible for some type of government program? I'm not trying to come down on you but am concerned that you're not getting the proper treatment. Please keep me posted!...Fuzzy
Fuzzy:
25+ yrs. Crohn's Disease Sufferer (diagnosed in '84); 2yr. Ostomate (ileostomy)
2yr. Remission for Conjunctival Malignant Melanoma
Drugs:
Ciprofloxacin as needed; Children's Vitamin/B-12 Supplement; Xanax as needed; Clonazepam 3x daily; Levothyroxin for Hypothyroidism
 
Several Eye meds used to help prevent further damage resulting from treatment for eye cancer
(former 6-MP/Remicade user - ceased due to cancer diagnosis)
 
Too many former drugs to name. Resection-'91, Sub-total Colectomy-'93, Rectal Abcess Excision-'01, Ileostomy-'06 (several other unrelated surgeries)

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