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Guts Cramping - Wits End

So, here it is in a nutshell: I'm 46 years old and have been having digestive problems for about ten years. It all started with rectal bleeding, which scared the hell out of me (naturally). That turned out to be a "horseshoe" fistula in the descending colon. I had two separate surgeries to correct that. Then I had my first colonoscopy. They found redness and swelling, but nothing else (thank god).

Fast-forward a few years, the pain returned with a vengeance. Now there was daily bleeding, cramping on a scale I had never before experienced, running to the bathroom ten time before lunch - usually just to sit there cramping, with an "urge" to go, but there was nothing there.

I had another colonoscopy, which once again showed nothing too severe - just redness and swelling. Weird.

I then went on a one-man adventure through the deep forest of alternative therapies, potions, lotions, restricted diets, parasite cleanses, aloe vera juice, raw vegetable juicing, bowel cleanses and on and on... Then the doctors moved on to the steroids. God. Never again. That was horrible and didn't even work. At all!

So, about two years ago, from my car - in the parking lot of the supermarket, I called my doctor and practically begged him for something to help with the pain. Without hesitation he prescribed Vicodin 5/325. I was to take one every four to six hours, as needed. The next day I felt "normal" for the first time in a LONG time. After a few days, I also noticed something else. The bleeding had stopped!! Well... maybe not totally, but by a LOT - maybe 80% less. The cramping was now at least controllable, and what was coming out of me looked relatively normal (without getting too graphic). When I told my doctor that it was the Vicodin that finally helped, he had a quizzical look on his face. He didn't understand why it would actually help any of the other symptoms, other than pain.

But it did - and still does continue to work.

Then, in October of 2014, Vicodin went to Schedule II classification and the problems and paranoia began. Now I have to go in every month for "checkups." Well... sometimes I can just call and then pick up the prescription in person. Naturally, everybody seems to look at me like I'm some kind of junkie, which is annoying but, whatever. My dosage has increased and decreased throughout the past two years, at one point it was two 10/325s three times per day. But honestly, I don't think I could stand going back to the old symptoms. I currently take a single 10/325 three times per day. I also take Milk Thistle and another product to protect my liver. My doc has been slowly decreasing my dosage over time, which has resulted in some daily pain - but nothing like it would be without taking pain meds.

Then, about a week ago, my doctor went on vacation just as my prescription was running out. I called to get a new prescription written and was told that the Vicodin had been "removed" from my list of prescriptions!! What!?!?!? Nobody could explain why, because there were no notes about it in my chart - and my doctor was away on vacation. So, this Wednesday I have an appointment with my regular doc to find out why this happened.

Has anybody else has this level of improvement from simply taking Vicodin?? What about my dosage? Is taking three 10/325s per day considered a lot?? Did I get "red flagged, maybe?" At one point (about a year ago) I was up to six tablets per day, but he reduced me down to three - probably out of fear of the DEA. It's so stupid that those with the drug problems get to impact the rules for those of us who use them responsibly. Anyway, any insight would be helpful.

And a huge THANK YOU! to the member called "Tuckamore" for somehow finding another posting of mine (in completely the wrong forum) and steering me here. Thank you!!!!!
15 Responses
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Avatar universal
I'm so glad you joined Medhelp too. We have such wonderful, caring and knowledgeable members here.
I'm so sorry you're going through this. You need a diagnosis, for several reasons. To know how to treat your illness is the main reason. Tuck is right. I several cities pain clinics and pain Drs will not take you as a patient if you don't have a diagnosis. It's so unfair because you need pain treatment while you're going through testing to get a diagnosis. Many Drs believe if you can't see the pain, like an MRI or through other tests, it must not be there. I went through this myself because it took me 1 1/2 years to finally get a diagnosis. During that time I called countless pain Drs and clinics and not one would even think about getting me in for an appointment. So, like Tuck said, it's probably best to stay with your current Dr for right now if he's willing to treat your pain.
Phil always posts very informative sites for us to check out. We need to be informed patients.
Take care and welcome to Medhelp.
Helpful - 0
547368 tn?1440541785
Phil,

It was a good article. I like The National Pain Report site. I read on it for a few hours.

~Tuck
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Avatar universal
Philnoir - That WAS a good article! Thank you for sharing!

A.
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7721494 tn?1431627964
There's an interesting story on this week's National Pain Report about "invisible illnesses."

I think you'll enjoy it


http://nationalpainreport.com/my-story-chronic-pain-and-non-apparent-disabilities-8827164.html
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547368 tn?1440541785
Thanks so much for your kid remarks. You're right, we quest for truth.

I'm so glad you have your script. Hopefully this won't happen again.

Those computer networks that tie the "system" together are both - Good and bad. When my clinic transferred from paper to computer they lost so much of my printed records. They are only as good as the person that's inputting the info into the computer. Important records and test results are lost forever as they destroyed the hard copies. Someone made the decision as to what was important. I'm still angry about that.

The good is you/we can go to any clinic - urgent care or hospital that utilizes that system and your/our medical records are just a few key strokes away.

PMP do make exceptions but normally neuropathic pain and migraines are not treated with opiates. Sad! There are also acute episodes exceptions.

I'm glad to have met you also. I hope you'll stay in touch even though your issue has been resolved. We'll welcome your input with questions and concerns that are posted on our forum. You'll be one of our member that has so much gastrointestinal experience as well as pain management info to share. We learn from one another.

Take Care our New Friend,
~Tuck




  
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Avatar universal
Tuck - after thinking it all through, I agree with you. One has to pick their battles in life, as my dad is fond of saying. Another good one in "better the devil you know than the one you don't." I think both apply to a person's GP. My doc is an Osteopath, so at least he has THAT going for him. Now... if he just did acupuncture and understood TCM he'd be perfect! Lol

UPDATE: So..  my doctors' office calls me this morning and tells me that my prescription will be ready for me by mid-afternoon. Turns out, the doctor on duty during my doc's absence didn't read through the notes carefully enough. My doc had lowered my dosage about two months ago, but apparently didn't notate it correctly in my chart. In his defense, they're all still getting used to the new fancy-schmancy computer system that ties together all of the doctors in the area. It's called "Lehigh Valley Health Network." Usually it's a good thing. This time, however, it screwed the pooch.

But... I finally got my refill about ten minutes ago. I found your comment about the "if you can't SEE it, it must not hurt" to be interesting - and utterly disheartening. That's terrible!!! Fibromyalgia is just one of MANY illnesses that are painful, yet can't really be "photographed". How about cluster headaches? How about migraines? How about just about ANY neuropathic pain!?!? Ugh.

I don't know how mine would be classified. My blood work is fairly normal, but my colonoscopies did, in fact, show inflammation and lesions. Then there's the two surgeries I've had for fistulae. That was fun, let me tell ya. Interesting. I just hope they don't try to pull that crap here in Pennsylvania.

I'm glad to have met you Tuck! You're a wealth of information, and you're motivated by the quest for truth - like me. Sooooo many people talk out of their ***, but you and I actually do the legwork. I respect that. Keep up the good work!!
Helpful - 0
547368 tn?1440541785
Ohhh, good question. I depends on the PMP - and if they will even take you.

I'm told that in my state you are only prescribed opiates if you have a diagnosis that can be "seen,", like a pain causing spinal issue, cancer or a similar condition.

In 2010 I was told by a PMP that if I had Fibromyalgia, Lupus, Chronic Fatigue Syndrome or a similar condition they wouldn't treat me. They said I should return to my home state, home doctors.  I didn't don't have those conditions, mine is documented on an MRI, etc. So the question becomes if a PMP will treat you.

If you are otherwise happy with your PCP I'd just ask him to be certain to either write a script for you when he's leaving town - or appoint another physician to cover in his absence.  

A physician always has to have the correct date on a RX that it was written. They can write an RX that says "not to be filled until or after___" and write in the date that the RX may be filled. So it's like postdating an RX.

I think before I jumped into the hassles that so often come with PMPs, I would try to work out a better system your my PCP. That's my personal opinion, other members may feel differently.
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Avatar universal
Interesting! Well, my doctor has failed to assign the task three times now. I swear he spends more time on vacation than in his office. Must be nice. Anyway, I asked his office to have him call me last night. Guess what? No call. What a, uh... shocker. I'm scheduled to meet with him tomorrow to discuss my "pain med situation." I think maybe I should just go ahead and suggest that I be referred to a pain management specialist. What do you think?
Helpful - 0
547368 tn?1440541785
I just read something yesterday on the guideline for physicians prescribing opiates. I wish I would have copied the site. I know where I found it the link - on the UW of WI Pain Management web-site.

Anyway these guidelines (official) stated that in an physician's absence he/she must appoint someone to follow his patients that receive opiates. I'll see if I can find that again.

It's not just kind and considerate - it's a recommendation that these physicians not leave us high and dry. But than that's not law.

Good Luck. We'll glad to have you aboard!
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Avatar universal
I am so happy to have joined this forum!! I have felt like an "island" for so long, sure that I must not be alone, but not knowing where to turn. At least I feel now like I have a voice, and that there are others familiar with this particular variety of Hell.

Supposedly, my doctor is returning from vacation today. I have instructed his office to have him call me asap. Hopefully this has all just been a mixup, lack of communication, confusion, or general, garden-variety cluster ****. Hopefully. If not, I'm about to have it out with my doctor. I seriously don't want to do that.

We'll see what happens. I will be sure to post the results of today's events as soon as possible. Thank you, everybody, for your support. At least I have that- and that's significant.
Helpful - 0
547368 tn?1440541785
Amen!
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Avatar universal
For what it's worth, I remember having horrible bowel issues when I was going through a super stressful time...nonstop diarrhea and stomach pain. This was post gallbladder surgery, so that wasn't it, but it mimicked my gallbladder pain so completely. This went on for weeks. Finally I went to my regular clinic and saw the dr on call. He prescribed Lortab 10/325's..wihtin 2 days I was fine. Just settled down the issues. Some people get sick on Hyrdocodone, it just took the misery away for me. I also get the awfulness of having to see your PCP every single month for your scrip. The staff all just look at you like "Oh, it's one of those". Do I think this "war on drugs" is helping? Not one bit. Just making all drs not want to look like "suppliers". Bless you. I feel your pain!!
Helpful - 0
547368 tn?1440541785
I'm glad you followed the "link". I don't remember the forum you originally posted - and I still have no clue why I was there - but glad you made it here.

Don't forget our Gastroenterology Forum. They too may have some information and suggestions for you. I've seen similar post to your in that community. Here's the link: http://www.medhelp.org/forums/Gastroenterology

Opiates slows what's called the Peristalsis of the bowel. Peristalsis is what makes our alimentary canal "work." The alimentary canal is the medical term for the entire digestive system from the moment we swallow foods/liquids until exiting our body. It's an automatic series of muscle contractions that occur in the digestive tract.

Some conditions such as a Colitis cause the Digestive System to speed up  to speed up these contractions (Peristalsis). This often causes cramping and loose stools or diarrhea, etc. It does not cause bleeding, that comes from other souses like inflammation/ulceration. So along comes an opiate and reduces the mobility of the Digestive System, especially the bowel.

In additions to reducing bowel mobility, opiates also provide pain relief. That is why opiates appear to be effective in many bowel conditions. Medical cannabis, or medical marijuana appears to do the same or similar.

Since the move of Hydrocodone to a higher Schedule II it's had the effect DEA was hoping to achieve. There are no refills and physicians are less likely to prescribe it. DEA want physicians that prescribe opiates to have special training in doing so. I think it's a law - but not certain that it covers all areas of every state. Rural areas often get a bit of a break as there are no PMP - or extremely limited PMP in many rural areas.

Remar offered you good info - and yes you are on a small dosage - about the same as I.  Physician's still don't like prescribing even small doses of opiates. Sadly - and in my opinion - the War on Drugs really is better termed the War on Physicians and Chronic Pain Patients.  

I don't take opiates due to my bowel issues (I lost over 3ft of small intestine in a MVA) but it does help them immensely. Gone is my diarrhea and 80% of my cramping. I get it.

I hope something we've said has been of help. Again you might also want to check out our Gastroenterology Forum.  

Please keep us updated. I look forward to additional comments from you - and please feel free to be active in our community.

Good Luck and Take Care
~Tuck




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Avatar universal
Remar - You've made a lot of good observations. Let me try to address them all.

Anxiety: Yes, I definitely have anxiety. I take Wellbutrin every day and Xanax, as needed (which is often). My anxiety has existed since childhood (a saga on its own). At this point it's pretty much hard-wired, but under control. But yes, it could be increasing my symptoms, though it has been more or less proven that anxiety and stress do not "cause" IBS, Crohn's or Irritable Bowel - it just makes it all that much worse.

Doctor: Yes, I agree that he has acted irresponsibly. I plan on telling him how I feel about it when I see him next week. Grrr...

Dosage: I'm happy to hear that mine is not considered a high dose. That leads me to believe that not only am I in the "safe" zone, in terms of dependency, but that there is room to maneuver a bit, increasing the dosage in the future, if necessary.

Food Allergies: I am a very strict eater. I avoid (90% of the time) bread, sugar, red meat, caffein, etc.. all of the common "triggers."

Gastro: Yes, I have been to a Gastro. It was a Gastro who performed both colonoscopies, of course, but it never resulted in a positive diagnosis. Instead, it's been labeled "non-specific Colitis." Good lord. What a cop-out diagnosis THAT is! Again - grrr.....

I even went to a third Gastro, who then proceeded to have me administer my own enema (right then and there) then pump me full of air, stick a camera up my ***, take a biopsy, causing me more pain than can be imagined - then never even sent my results (which were undoubtedly inconclusive) to my regular doc.

My opinion: Western doctors SUCK when it comes to chronic illness. Sure, lose a finger and they work six hours straight and get that puppy sewn back on with full functionality. Get a chronic illness, however, and unless it's diabetes - you're screwed.

Sure, it could be IBS. In fact, last time I visited my doctor we discussed having me officially tested for food allergies, even though I avoid almost everything on the "common trigger list" by default. I'm a fanatically clean eater.

So... until it's figured out, which may be never, I know FOR SURE that the Vicodin at least lets me live a life - if, admittedly, somewhat limited and handicapped.

It's just all so damned exhausting... Fighting to get hold of a drug that actually provides some relief is, to me, absurd. Just give me the drug! That's your JOB!!!!! Grrr....
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Avatar universal
I'm not sure why the Vicodin would help your symptoms, but it did.
Do you have problems with anxiety? I'm asking because anxiety can cause all sorts of unusual problems and digestive issues can be one of them. Medications like Vicodin can relax some people and actually help with anxiety.
Your Dr going on vacation without a back up Dr to take care of his patients was irresponsible in my opinion. Removing your meds off of your list of meds was also irresponsible. Any good Dr knows that it's not a good idea to go cold turkey off of a pain medication.
Yes, he could be worried about these new laws but if that's the case then he should have recommended that you get in to pain management and given a list of pain Drs.
I'm really sorry this has happened to you. It's happening to thousands of people all over the country.
This is just my opinion but I don't think you're on a high dose of meds at all. They help you with your pain and you have had your med dose cut in half.
I'm kind of surprised your Dr has never mentioned irritable bowel syndrome. You have several of the symptoms. I take it you saw a GI Dr because you did have a colonoscopy.Or, did your family Dr order this test? If so, I would recommend seeing a gastro Dr to find out of you do have IBS, a food allergy or something else going on. In the mean time remove wheat from your diet. I would do this to see if it makes a difference. If it doesn't then try removing milk and milk products.
Will your Dr be gone until Wed or is he back and this is the soonest you can get in? If he's in the office you might want to call Mon and ask to be put on the cancellation list. This means if someone cancels their appointment you can get in sooner.  
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