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Advice Please! Pain management & symptom management

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Posted 2/25/2008 11:24 AM (GMT 0)
I work part-time & freelance also & my husband works & we have 2 kids & no insurance. I do qualify for medicaid, but only after a $1700 spend down per month.

I woke up with problems again today. I am a lot of pain. I am praying my doctors get with me this morning. One of them has to call me, right?

I have so much pressure again & nothing is coming out. AGAIN. But maybe it's female related since I am spotting now too (& I just got off my period 1 week ago & it was 9 days of the worst period ever). I just don't know what my problem is, but it's something. Thing is I have to watch my nephew today & work Tuesday, Wed., & Thurs. (& my boss is gone so I need to be there).

I am on Darvocet for the pain in my left rib/back/shoulder that is what started me going to the doctors in the first place (well, actually it all started with a cold, then the flu, then pinched nerve in my shoulder, then a kidney infection, all boom, boom, boom, one after the other starting last May. Then the weight started dropping off & I have lost 50 lbs at this time. My brother was diagnosed with pancreatic cancer so they thought I had cancer & didn't find cancer anywhere. They did the hemaccult test that came back positive so they thought it was colon cancer.)

I had the colonoscopy/EGD in October & it found ulcers & inflammation throughout my colon, but I was told it was mild colitis & would go away with 1 month of Azulfidine. (They did not do any small bowel biopsies.) After a month of Azulfidine, I stopped & the weight started to come off. This is when I started having bowel problems (before this I only was going more freqeuently, 2-3 times a day, no D, once in a while with blood). My Norco I was taking at the time for my rib pain was not digesting along with some other pills. Lots of food was digesting & I started going more & more & it started getting softer. They put me back on Azulfidine & my osteo said he thought I had crohn's or something. I have been on Azulfidine ever since. Then I started still losing weight, even on Azulfidine, and then I got D & ended up in urgent care needing IV fluids & steroids in the IV. He put me on a quick 6 day treatment of steroids. I saw my pcp a few days later & she referred me to a GI. While waiting for GI appt., I ended up in the ER with low potassium, & dehydration. I saw the GI 2 weeks ago & she said I for sure had an IBD, she just wasn't sure which one & sent me for the SBFT (I'm the one who posted about the blob of barium so the radiologist couldn't see. I STILL have not received the results). She said she will probably change my meds, but wasn't going to until she got more info from more tests. She said the high WBC count (I keep getting tested because it's been high lately) is due to the inflammation from IBD....

The GI didn't say anything about Darvocet causing GI upset. Ugh. They just gave me another 30 days supply with 2 refills, and normally I don't get refills & have to call each month for another supply.

I just figured it was normal to have lots of pain. I keep calling my doctors, but I don't get a call back. Maybe it's just my female problems, because I have never spotted ever before in my life. Can IBD cause these type of female problems?

I am starting to get a little worried. The pain is bad & I feel like I have to go to the bathroom, I woke up again at 4:30 in so much pain & I tried to go, but now I can't again.

TBO, I just wanted some hints as to how to deal with the pain. When it comes to pain, I have a hard time deciding if it is moderate or severe, I always can tolerate pain (I had both of my children via natural childbirth with no drugs or epidural), but after seeing my brother die of pancreatic cancer, I am sure my pain is not that bad. So how do you define "moderate" & "severe"?
Posted 2/25/2008 11:33 AM (GMT 0)
Well, forget not being able to go, I just ran to the bathroom.... ugh. I hate this.... I feel horrible again & need to feel better so I can get through the next few days... I am so tired already....
Posted 2/25/2008 8:58 PM (GMT 0)

  I think it is time you demand answers. If this means you have to go to the ER then do it. take it from experiance it is just going to get worse. I just baffels me that people just don't understand how much pain we go through. But yes the narcotics in pain meds ccan cause constipation. I was using a heating pad instead of taking my pills. Cause I did not want things to get worse. No it did not help real good, but I was scared that the pills would make my sympons worse. I tried to sleep as much as I could so I would not have to be in pain. I do hope you get releife soon. But do what u have to to get things started with your doc. Take care.........you are in my prayers.

                                                                                     Catherine

Posted 2/25/2008 9:26 PM (GMT 0)
hukleberrie, reading your last post, you say that your white blood count is high, this really does indicate that your body is
battling some kind of infection, as well as inflammation. This really has gone on long enough, IMO you need treatment, steroids
at least. You have to realize this truly can get out of hand, and become a true emergency. IT is now time to pester your GI or
your PCP, and don't stop until you get answers....
Posted 2/25/2008 10:19 PM (GMT 0)
also be aware that your darvacet could be making the constipation worse. You want to get a medical opinion as to what is causing this before you make yourself worse.
Posted 2/26/2008 3:41 AM (GMT 0)
The WBCs have been a little high since January when I started feeling ill again worse. They kept testing it & testing it & testing it. End result, they said it was leukosykosis & that they are going to monitor it. I told the GI about it & she said it was due to inflammation.

I know about the constipation. And it really was never a concern since this all began, I had been going numerous times a day. Even on Norco or Darvocet. But I have had 2 different times since January that I had gone days without going. I don't think that's that big of a deal. That used to be the norm for me. It's not the not going that concerns me, it's just the pain that's hard to handle. It comes in waves though, so there are times when it is not too bad.

BTW, I have been using a heating pad to help, but the PT said to never use it for longer than 20 minutes at a time because all the increased blood flow can actually start causing problems, so I limit my heating pad time. Besides, tomorrow is a work day, so it's time to suck it up. I can't take a heating pad to work. : (

I did call & bug my docs. I called my pcp because she gets back to me & I have only seen the GI once. I told her I was in urgent care this weekend & they said I had constipation issues & to treat the constipation. They took my info & said they would call me back. They did & she said to go to urgent care or see her tomorrow, so I see my pcp tomorrow. Finally I get to see her. The GI I like, too, but she's expensive to see. Anyway, they also said they didn't receive a copy of the SBFT, so I called the GI & asked about the results & she went looking for my file & said it was on the Doctor's desk with a bunch of other files & she will post my message on there that I am looking for it (I made sure I told her I received the bill for it already). I hate being such a pest but I feel like crap. So then I get a call back from my PCP's office saying the that GI is looking for a copy of my EGD report. I am wondering why they would be interested in that, I told her that my stomach looked fine. There was some bile in it, but that's normal & it was fine. Biopsies came back mild chronic gastritis, but I was told that was a normal finding. I gave the GI pictures of it & I had the biopsy report, but I didn't have the procedure report, which I didn't even know that I was missing any reports, I had thought I had everything except doctor's notes. So I am not sure what she is looking for, but anyway. That's where that's at. I pushed them a little more, hopefully I am not bugging too much, and hopefully tomorrow I will know more. I will post when I get back...

I just want to feel like I am on the right track. Like someday soon I will feel better. Ya know?
Posted 2/26/2008 3:02 PM (GMT 0)
I am on my way to work & once I get to work, I have a message to call my pcp's doctor's office. They had called my house & my hubby gave them my work number. They now wanted me to come in at 10:00 instead of 4:20. It was almost 9:00 when I talked to her & I am an hour away & had just got to work & can't leave because there are things here that need my attention. I told her I couldn't, so they pushed me to be here at 4:00. I said, okay, I would be there at 4:00.

The thing is I am starting to worry that there was something on the SBFT because I called at 8:20 to the hospital that did the test because my pcp doctor said they hadn't received it. They had the WRONG fax number down, I had thought that was the case. So she said she was faxing it to the correct number right then. Not a couple minutes later my doctor called my husband.... I am worried that there is something on that test.... sad
Posted 2/26/2008 4:08 PM (GMT 0)
You are OBVIOUSLY having a major Flare-up. We have all been where you are. I don't know your complete situation, but seriously think you need to contemplate a route many of us choose to take: Pain Management. Gi's just are not trained to deal with our pain problems. any decent pain clinic knows them by heart. Believe it. Of course, that being said, you need to find one. Please ask either your Family doc or GI if they know of one & to give you a referal to it. Darvocet is obviously not giving you relief, time for a new tactic.

Sincerely,
Matthew
Posted 2/26/2008 11:38 PM (GMT 0)
Yes, I believe you are right, this is a flare-up. I feel like maybe now that we are figuring out what it is, that we can get this all straightened out. I talked with the pcp quite a bit. She didn't really offer up much information about inflammatory bowel disease, but said that she was going to put me on prednisone (I am not thrilled about that, but I need to start feeling better.) since I hadn't heard back from the gastro (but while I was in the pcp's office, the gastro's office called home & talked to my husband but wouldn't give any info, said to call her in the morning) and probably increase my Azulfidine. I am so wore out from all the driving around after working, so I will make this short. I lost a couple more pounds from the last appt. Nothing big (thank goodness). I got a copy of the SBFT test (I will post the results on another thread to see what you all think), and FINALLY the gastro is calling me back! (So maybe I will get more insight). Maybe, just maybe things will get better. I was starting to wonder....

Thanks for all the support
Posted 2/27/2008 12:16 AM (GMT 0)

Hi hukleberrie...oh, this laptop drives me crazy! I just tried to post a long reply to your message &, of course, CRASH! Anywho, to summarize my post: do you have the option of joining an HMO? I reluctantly did this in '90 to lower my medical costs (I had insurance through my employer but as the gastro charges increased, my employer refused to pay the full 80% & the out-of-pocket expenses were killing me). Well, I'm still w/ the HMO, under Medicare + the extra premium & it's great. All medical records are computerized & therefore, all of my doctors have daily access to these records. Many tests are done at the facility that my PCP resides (bloodwork, urine, ekg, x-rays) & if I need to go to the hospital (Brigham & Womens, Mass. Eye & Ear), my doctors, either electronically or by fax, send & receive my records, referrals. There's little that I need to do & if I request copies of my medical records, these include all hospital info). I realize that you may not have this option as it depends on your state. This country definitely needs an overhaul of it's healthcare system! Regardless, the symptoms you describe are typical of a flare-up, just as Matthew stated, & this generally means that you need to be treated, either simply w/ meds or, at worst, surgery to remove the portion of the bowel that's causing the inflammation. While I can list several cons of having an ileostomy I can also list many pros...no. 1 being the higher absence of pain. A piece of advise...do not worry about being a pest! Realize that, this is their job & trust me, the more that you speak-up, the more likely that you'll get immediate treatment. I was the same way for the first 15yrs. or so before I realized that the more outspoken people were getting the most attention. Remember, there's a difference between being an obnoxious ass & being respectfully firm. Keep at it & we'll await your reply...Fuzzy  tongue   

Posted 2/27/2008 1:16 AM (GMT 0)
Well, I posted my results. I am not sure what it all means, there are no "separation of bowel loops, and no focal scarring detected in the small bowel." It goes on to talk about the pooling of barium "in the LRQ. Potentially, this is within the distal ileum, or perhaps, even more likely within the cecum." It says "It is potentially within some small bowel loops in the RLQ overylying the cecum. I suspect this is a focus of some inflammatory process." And finishes with "I suspect this is related to inflammatory bowel disease, and other etiologies are not entirely excluded either." So I am not sure if I should be happy that there are no strictures, or worried. I don't think it's too bad, though. I would love some input on this.

I looked into BCBS. It was a few hundred a month & doesn't cover pre-existing for 6 months. So I guess I should look at an HMO. I haven't thought of that.

I have a good relationship with my PCP, so I don't want to change, so I will have to see what she accepts. Currently I receive the medical care discount which is basically financial assistance for medical through the federal govt. It's a clinic I go to. I only pay 10% of anything that is done at the clinic, from my ultrasounds, to my appts., to my labs. The physical therapy, too. X-rays. (not the SBFT, though, had to go to the hospital for that.) So I rely on that a lot. It's the procedures (and hopefully I will never need surgery) that cost so much. CT scans & MRIs & such. But now I qualify for medicaid, so anything OVER $1700 EACH month, medicaid will pick up. The $1700 before that, though, I am responsible for. But I am realizing this could get really expensive for me. I am thinking that I need to persue the insurance thing further. I am still trying to grasp the fact that I have an illness that is going to haunt me forever.

BTW, my PCP & her clinic is all computerized, too. Not sure about the GI. I don't think so. But I have had so many tests all over the place that I know what you mean about the records. I decided to get copies of all my stuff so I have it. When I went to the GI, my PCP hadn't sent over anything. Boy was I glad I had a big fat envelope with all my labs & test results.
Posted 2/27/2008 1:24 AM (GMT 0)
Maybe you should suggest that your husband start looking for a new job with group health insurance. That way you and your kids would have full coverage no matter how sick you get!! It sucks planning your career around insurance but that is our only option in this country right now.
Posted 2/27/2008 3:31 AM (GMT 0)
We are in Michigan, your lucky to even HAVE a job right now here.

He has a good job & they are talking about offering us some type of low quality (I am sure) health coverage. I am thinking maybe I should look myself, but am not sure how I can work full time away from home right now.... I can't barely make it through each day.

I am hoping this is just ulcerative colitis. Do I still have hope?
Posted 2/27/2008 4:23 AM (GMT 0)

Hi hukleberrie...to get an entry level job at the financial co. that I was formerly employed, I believe that you need a BA degree, at minimum. Harvard grads are applying for these low-level jobs! I certainly look forward to a new administration to oversee this country. I expect that the economy is going to get worse before it gets better. Unfortunately, this also negatively affects our social programs. In my state (MA), they just passed a law making it mandatory that every resident have health insurance; if employers (ers) don't offer it, they get hit on their taxes (same w/ the self-employed). Certainly not a perfect solution but it does make er's accountable as many were attempting to cease offering this benefit. You stated that you were hopeful that your illness is just Ulcerative Colitis?!!! This a very serious disease. The one pro to having UC vs. Crohn's is that UC can be cured by having ostomy surgery (often the route that people w/ this disease take). I have an ileostomy for Crohn's & trust me, dealing w/ any type of ostomy is no picnic! Otherwise, the 2 diseases have many similarities. You're probably thinking of the generic term 'colitis' which is sometimes used to describe a milder intestinal disturbance. Usually, it's short for 'UC'. A con of UC vs. Crohn's is that hemmoraghing (can be fatal) is more common w/ UC. Since I have an ileostomy, I'd prefer UC as I'd be cured. If I hadn't had the surgery, I might stick w/ the Crohn's, hoping for a cure. Both suck! tongue

Posted 2/27/2008 11:10 AM (GMT 0)
I know UC is no picnic. I have investigated it a bit. It's just that you don't get the fistulas & small bowel problems & such... I think it is CD, but I don't know for sure yet. I don't have much blood since this all started I have only seen blood maybe 5 times. I have been tested & had occult blood though. That's why I am thinking it is not UC. It's just that it seems like since CD can attack your whole GI tract, that it seems more serious to me.

I still can't figure out why I am bleeding again after that horrible period just a week ago & why it won't stop. My body seems so messed up. I just don't understand it.

I can't go again. I feel like I have to, but nothing is coming out. Mucus, that's it. It hurts. My whole lower abd. I keep hoping every day it will get better, but I feel worse. And I lost a couple pounds through the night. Ugh.
Posted 2/28/2008 3:41 AM (GMT 0)
Hi hukleberrie...I've suffered from terrible PMS & nasty periods, since age 35. My gastro once told me that menstruation can intensify the symptoms of IBD & vice-versa. Unfortunately, if you continue to have these problems, you'll need to visit the gyno. I expect, however, that the falre-up is causing these problems. Other symptoms that I experienced w/ Crohn's were back spasms & aching knees...when the pain in my knees started, this was a sign that a flare-up was coming. I pretty much assumed that every ache, pain, fever, etc. was due to the Crohn's. That is a big problem w/ this disease, it can literally affect just about every part of the body. I hope that you find some relief soon... tongue
Posted 2/28/2008 10:24 AM (GMT 0)
Oh, man! My periods are going to be worse, too? No, way.... Boy, the more I know, the less I want this.... It's depressing.

I don't see a gyno, I just go to my pcp for my female stuff. I told her about still having another period & constant bleeding, but we got sidetracked at the last appt. So I figured if I still have problems today I am going to call. I guess I have to. I bug them all the time, I am sure they are tired of me.

I was hoping still, somehow that the SBFT would show I do NOT have CD, but after you all posted on my thread with the results, I am discovering that I must face facts. I thought I was okay with it, but I woke up in so much pain this morning, I am not. I guess I have to be, I don't have a choice.

Hey-I never had a stool sample checked for bacteria or parasites. Do you think I should before start the dreaded prednisone?

Also, I am not sure if I should go ahead & try to get a colonoscopy again since they didn't get to the TI & didn't biopsy the cecum or ileum. The GI wants to do another one & I am just not wanting to, due to how joyful an experience it can be, lol, (but I have to remember when I had mine done, I had the EGD & colonoscopy done at the same time & they said that can cause a lot of pain from the air they put in you both ways. It was horrid!) & of course, since I am uninsured, I am not sure how to pay for it. My medicaid will pay for anything over $1700, so I would only have to pay $1700 of it. Would it be worth it, do you think?

Since I had a few ulcers & inflammation throughout the rest of my colon on my last scope, could it mean if I do have CD (which you all are telling me) it would be crohn's colitis?

I have so many questions. I really haven't been told much through the doctor's really. This morning I am stressing about this all. I just took another part-time job (#3) so I can make some more $ to pay for these bills. But I am worried that I am going to be too wore out to even be able to do it all....
Posted 3/3/2008 5:17 AM (GMT 0)
Hi Hukleberrie...the stool sample is generally one of the first tests that is done. I actually new someone that was suffering w/ digestive problems for about 3yrs., believing, after hearing my tale, that he must have a digestive disorder. He was an older, intelligent individual but wasn't having much luck w/ his doctors in Florida. He finally decided to come up to Boston with the hope of getting some answers. A simple stool sample determined that it was, indeed, parasites! A 10-day course of antibiotics & he's been fine ever since. Absolutely, this test should be done! I'm not sure why your doctor is unable to diagnose the problem...I assume that they took biopsies of your colon? Their are several digestive disorders...the 2 that we've been discussing are Crohn's Disease & Ulcerative Colitis. It sounds as though you need to have a discussion w/ your doctor (hopefully, the GI) & ask questions! It seems that you're in the dark & not getting answers...if needed, bring a family member or friend to help if you're feeling intimidated. Only a professional can diagnose what's going on...it's possible that you don't even have an Inflammatory Bowel Disease...time to insist on some answers! There's no sense in going through additional tests if you don't have the results of the previous tests. Lastly, you may want to do some of your own research regarding IBD (check out the MayoClinic.com...it lists all kinds of diseases/conditions & explains what they are, the symptoms & how they're diagnosed). Unfortunately, no one on this forum can diagnose your problem & worrying about what you 'might' have isn't beneficial. You must talk to your doctors!
Posted 3/3/2008 11:08 AM (GMT 0)
I did talk to my doctors. My PCP didn't want to think I had IBD, athough a DO I see for my back/rib pain said that's what he thought it was.

I have checked out the symptoms & yes, it does sound like my problem is IBD, I am just hoping it's not.

I did have the hemmocult test, but not the stool test for bacteria or parasites. It was mentioned to me by a friend of my father-in-law's who is an internist to make sure & have that done, although he believed I had an IBD, probably UC. I am thinking that it's probably not parasites, though, because I have been on antibiotics constantly (sinus infection/fluid in the ear that won't go away) & still have this problem.

I did have biopsies of my colon at my last colonoscopy & they found inflammation & some ulcers throughout. They did not look at my ileum & they did not biopsy my ileum or cecum either. The GI says that this is for sure IBD, she just wasn't sure which one. That's why I had the SBFT, but she said that doesn't give the answer either. Just that there is a problem at the cecum/ileum area. She DXd me with IBD, she said especially since there was "crypt distortion" on my biopsies from my colon.

I went ahead & started the prednisone on Friday. I was so tired last night I went to sleep early, but was up 5 hours later in so much pain. Then the trips to the bathroom began. Ugh.

My symptoms are: Weight Loss (50 lbs.), Blood in Stool, Cramping, Pain in my lower abd/lower back/hips, BMs weird (sometimes constipated, sometimes 6+ BMs a day), Female Cycle irregular/constant bleeding, EXTREME FATIGUE, periodic excessive sweating

Things testing found: SBFT-problem with clumping of constrast in Ileum/Cecum area, Dehydration (needing IV fluids twice), Low Potassium, High Protein, High WBC count, Ulcers & inflammation from Colonoscopy, Chronic Gastritis from EGD, Colonoscopy biopsies had inflammation & crypt distortion, FOBT positive.

I think I was just HOPING it wasn't so. I don't want IBD. I have seen my cousin end up with a bag due to UC & don't want that to happen to me...
Posted 3/3/2008 11:48 AM (GMT 0)
I really feel for you, your story is so moving... and so frustrating. i wish i could do more to help, but it sounds very similar to my symptoms (though yours sound more severe). my gastro started me on asacol and mesalamine enemas and it's already calming things down after about a week. not sure if you've already tried that method and that's why your doc is going to steroids, but it might be an option depending on where the pain and inflammation is. they don't seem to have bad side effects and seem to work really fast to reduce pain and inflammation. i'm not diagnosed with anything yet -- flex sig showed colitis, so i had to get some bloodwork done and I'm scheduled for a full colonoscopy in april.

different antibiotics work in different ways, so it is possible to have parasites or an infection in the colon that would be impervious to something you took for your sinuses. I'm hoping I don't have UC either, but it is reassuring reading about other people who got their flares under control and live better with less pain.

as far as insurance, I know around me in NJ some supermarkets have insurance options for folks that work part-time. my old supermarket started benefits if you worked at least 17.5 hrs per week. I'm sure it wasn't the best, but it was something. Good luck!
Posted 3/4/2008 12:27 AM (GMT 0)
Ditto to Bluepurl's comments. Also, doctors are unable to biopsy the ileum as the colonoscope doesn't reach that far. I'm unaware of any endoscopy device that has the capability of reaching this area; that's why other tests, such as upper & lower GI's, MRI's, etc. are needed. You should really be discussing these problems under the topic 'Ulcerative Colitis' as opposed to Crohn's Disease...you'll probably get some better info as far as the drugs prescribed & the overall experiences of others w/ this disease. Sounds like you're on the right track. Let us know.  tongue   

Posted 3/4/2008 1:10 AM (GMT 0)
I am confused... The D.O. I saw today thinks it's Crohn's. He said that's why I was having problems with the Ileum/Cecum area. I don't know...

Why is the Ulcerative Colitis forum a better place for me? I guess I will go & post there...

My GI said she needs to see the Cecum & also do biopsies of the Ileum. She sounded like it wasn't much of a problem when she talked to me about it. She seemed annoyed that the surgeon didn't look at the Cecum or do a biopsy of it or the Ileum. But fuzzyw says that you can't get a biopsy there? I don't understand all this.... Why would I do another colonoscopy if she can't get a biopsy?
Posted 3/4/2008 1:23 AM (GMT 0)
I was reading through your tests, and I was wondering whether you'd benefit more from another scope or would a camera pill be more beneficial? Since the GI is sure it's some sort of IBD, a camera pill might show narrowing and inflammation along the entire route , and get another peek at your small intestine. I'm not sure, it's just a thought. I don't know the price differential, or if it would be beneficial in your case.
Posted 3/4/2008 1:40 AM (GMT 0)
Thanks for the info. I wonder if it would be beneficial. I am so lost with this all, to be honest. I know that the GI wanted to see the colon for herself, I think (a general surgeon did my last one). Because of the ulcers of my colon before, I think that's why she was wanting another colonoscopy, although, she did say a couple times she wanted a biopsy of the ileum.....
Posted 3/4/2008 2:02 AM (GMT 0)
Do you see your GI before the colonoscopy? It sounds like you would benefit from another appointment with her to make sure you're both on the same page, and she can answer some of your questions. It seems that you're diagnosis is coming from 3 different sources. The GI is usually the one the other doctors all defer to as they're considered the specialists for the Gastro-Intestinal tract. Some people take a very long time to get a diagnosis. It sounds like a preliminary one has been made (IBD) -now a few more tests should help to refine it. Both CD and UC are treated with the same meds. The drug you have been prescribed is systemic - so it will treat either problem.
I would ask the GI what she hopes to gain from another scope. Treatment with prednisone for a couple of months might reduce the inflammation and signs of disease anyways (I had my first scope with tons of skip lesions and ulcers - after treatment with a variety of meds, I switched doctor's and the new one could only see a small area of active inflammation when he performed a scope. He wanted to change my diagnosis to UC - even though I had evidence of CD in my earlier scopes.) Unfortunately mine is CD. I think so long as treatment is occuring (prednisone) a firmer diagnosis can wait until you see the GI.
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