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I need help with extreme pain caused by rare form of Crohn's Disease.
  1. #1
    Kable is offline New Member
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    Default I need help with extreme pain caused by rare form of Crohn's Disease.

    I currently suffer from a rare form of Crohn's Disease which not only affects my digestive system, but my renal system, joints and central nervous system. My condition causes chronic swelling in my kidneys and chronic Uric acid kidney stones, about 2 to as many as 200 stones a day. Some are as small as a grain of sand and the largest that I have been able to pass was 10mm, but the largest removed was 32cm. My disease has also destroyed the majority of the B cells in my pancreas so I now also have diabetes. Because of my condition I can not take NSAIDs or Steroids and for the lat 7 years I have been treated primarily with morphine.

    My original pain specialist managed my care from 2005 to 2010 before she retired. During that time I was treated with morphine and for 5 years my dosage remained relatively the same. In 2010 when she retired I was transferred to a new pain specialist. During our first appointment he insisted I go through detox and start Suboxone. He said that I had been on morphine so long and that the increased dosage was becoming impractical and was likely causing my pain. When I explained my dose had remained the same for 5 years he looked at my records, said "yes, you are right, but we need to try this to see if you pain improves." I explained that I was worried about being labeled an addict and being treated like a criminal and he explained that I was dependent and not addicted. I have never used illegal drugs ever, not even once, I don't drink or smoke and I have always used my prescription meds exactly as specified by my doctors.

    While in the hospital for detox I got very sick and was told it was just withdrawal. My pain was excruciating and I could not stop throwing up. On the 3rd day my blood pressure dropped to 50 over 30 and the realized something was wrong, but they couldn't figure out anything so after giving me some medication to raise my blood pressure I was released. I was back in the ER that night which was when I found out that Suboxone is only FDA approved to treat addiction, not pain and because of the fact that it interferes with narcotics and opioids they were reluctant to treat my pain. So they sent me home. After 3 days of pain and vomiting my wife called an ambulance and they took me back to the hospital. They found that I was loosing a lot of blood out of my urine. So they thought I had a kidney stone. So, they gave my 3 units of I'VE and some morphine and then sent me home again. I was back 3 hours later, peeing straight blood. After a CT Scan hey realized my right kidney was twice its normal size and they transferred my to another hospital for emergency surgery. While they were prepping me for surgery the surgeon came in and right in front of my wife and kids he told me that because of my condition and my past drug use I only had less than a 40% chance of surviving surgery. When I asked "What drug abuse?" He just turned and walked out. I started freaking out because my kids and wife were freaking out and so they called my pain specialist and afterwards they said they understood that they had made a big mistake.

    I spent the next 8 months or so arguing with my pain specialist insisting that the Suboxone was not working. So he tried using steroids and then NSAIDs such as Tordol to try and get the swelling down. The Tordol worked great and so he started pumping me full of it. Then my kidneys shut down. That is when my nephrologist and all my other doctors got extremely upset when they found out what was happening. My pain specialist had had me taking Tordol for 3 months straight when you are only suppose to have it for 5 days every 30 days. They insisted he put me back on the morphine, but he refused. S they sent me to meet with a team of 8 pain specialists. After an 8 hour sessions and a day of tests they recommended that I be put back on morphine or that I be transferred to their care. So, my pain specialist finally agreed, but insisted I continue to take Suboxone.

    Fast forward about a year. Things are stable and my pain is under control. Then just before Christmas I call my pain specialist to get a refill of my meds only to be told that he is on vacation and that his covering physician refuses to fill my scripts with no explanation as to why and to go to the local emergency room if I have pain. Well, I was almost out of morphine and Suboxone and the ER refused to see me for any pain related issues. So my other doctors tried to get me admitted to the hospital, but they could not find a room available. So after two weeks of excruciating pain and withdrawal they finally had no choice but to call in some drugs to help me finish off coming off the meds. I wound up in the hospital for 3 days.

    After two more weeks I was finally able to meet with my pain specialist at which time he came clean and admitted that Suboxone is not FDA approved for pain and that yes it was causing issues, then he admitted that prescribing any narcotic with Subuxone is also not okay and that is why his covering doctor refused to refill my scripts. He said he could restart me on the morphine, but insisted that I stay on the Suboxone. When I asked why, he said it was because by having me on Subuxone it prevented the state medical review board and the FDA and DEA from complaining. So I refused to go back on the morphine. So he put me on a drug called Butrans. When I asked what it was he told me it was the same narcotic used in Suboxone but without the other drug which is the drug that blocks narcotics and opioids. He also insisted I keep taking the Suboxone for break through pain.

    I have tried the patches off and on for 3 weeks but after having the patches on for just a few hours I get nauseated and then I start throwing up so I have to take the patches off. Now the patches do work at taking the edge off the pain, but they make me so sick and light headed I can not use them. My pharmacist has explained that these side effects affect about 28 to 38% of everyone who has taken it.

    Now my pain specialist refuses to consider any other options or drugs and insists I stay on the. Suboxone but at the same time will not give me a straight answer as to why. My other doctors want me to find a new pain specialist but no one will take me as a patient because of what my current pain specialist has done. They also don't feel safe treating me, because of the immune suppressants I am on and my kidney problems.

    I have been to the ER 8 times since January 1st and they are already insisting too that I find a new pain specialist and also one that is local. My other doctors are now telling me that unless I find another pain specialist who is willing to work with them they are not willing to continue on as my doctors.

    I have made the decision to stop taking the Suboxone and am off of it now as well since I saw no point in taking a drug especially a narcotic which did nothing for the pain.

    The pain is so bad I can not walk and I am unable to sleep more than an hour at a time without waking up and vomiting. I can not go to the ER and the pain is so bad that I am unable to do anything. I am unwilling to go back on any narcotic or opioid because I can not go through what I just went through these past few weeks, but I also can not go on like this. My wife and kids just cry now because I am so sick.

    I have begged my doctors to try to do surgery, but they have informed me that there is no surgical option available at this time and that surgery will only make things worse. So I just feel I amount of options.

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    Default Just, wow...

    [deleted - swearing]
    Last edited by Anonymous; 02-08-2013 at 04:48 AM.

  3. #3
    mothwillowweb is offline New Member
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    Can I ask what name they are using for your condition? I also have Crohn's and have for 12 years but the last year and a half have been like no other. I am in pain ALL THE TIME. I feel like someone's beaten me with a sack of potatoes or the type of body aches you get with the flu. I am exhausted ALL THE TIME. They keep running tests, thinking maybe I have another autoimmune disease like lupus but we can't pin down a diagnosis. I feel like no one believes me. I haven't worked for 3 years because the pain gets so bad I can't think and I get exhausted to the point of nearly passing out after about 4 hours. None of these are good qualities in a LPN I hope you find answers. It's so hard suffering so much.

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    Kable is offline New Member
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    Wow, I forgot about this post it was so long ago. I am sorry to say they still have yet to officially diagnose my disease, but what all of my doctors have agreed upon is that I have a rare type of Crohn's Disease or other undiagnosed auto immune disease attached to my Crohn's. I have been fighting this since July of 2005. Here is an update regarding my particular case though:

    Last April of 2013, I developed a severe case of swollen lymph nodes after my weekly dose of Cimzia. When my doctors contacted the drugs manufacturer they discovered that since April of 2009 I have been experiencing a severe reaction to TNF Modification therapy otherwise known as biologic TNF modification therapy. Because of this they now believe that the TNF drug Cimzia has played a significant factor in the severity of my symptoms if not an out right cause of my symptoms that said they say that I have kidney damage now that is consistent with a toxic reaction or is linked to Hyperoxaluria and Crohn's Disease or I may have Lupus or Sjogrens Syndrome or I have a condition called Erythromelalgia otherwise known as "Burning Man Syndrome". They also believe that everything may be linked to Lyme Disease and that I have contracted acute auto immune response to Lyme Disease which has lead to these other diseases and diagnosis. I just had an upper and lower scope of my digestive track done about a month ago and was told my Crohn's Disease was still active, but had not spread. However, 8 hours after the procedure I developed rhabdomelalgia a disorder that causes the rapid break down of the muscles and subsequently kidney failure. Again they told me that something was seriously wrong with my immune system or my condition was the result of a toxic response to the drug Propofol. Then they scoped my kidneys two weeks ago to stage my kidney disease and to determine if I was telling the truth about the 5,690 kidney stones I have passed. The count is now over 6180 as they removed roughly 400 to 600 stones from my right kidney and about 30 from my left kidney. The surgeon remarked after surgery, "I have never before witnessed anything like this. This should be medically impossible and the stone evidence in your right kidney appears to be similar to the break up of an extremely large stone from a lipotrip procedure, which we know was not performed. Your condition is rare and considered to be extremely painful." They have now recommended an "auto" transplant of my right kidney to help elevate some of the pain.

    Over the last 5 years I have tested positive for Lyme Disease 3 times, but the Infectious Disease Center in Seattle refuses to diagnose me with Lyme since they believe it is impossible for me to have Lyme Disease as I have not been outside of Washington, Montana, Idaho, Oregon, Georgia, Nevada, Arizona, Wyoming or Japan and they say there are no known Lyme cases from these states. I have also tested positive for Sjogren's once, but subsequent tests showed negative. They are now wanting me to go to the Mayo Clinic, but they are not sure if they will be asking me to do that before or after my kidney surgery. So, things are still a huge question mark.

    The last 3 years have been extremely painful for me. The last year and 2010 have been the worst, primarily due to changes in state and federal guidelines for pain management. My new pain specialist is very good and has a very kind and caring bed side manor which has helped extremely. My prior pain specialist ignored my concerns and actually made a huge mistake by prescribing two drugs that are absolutely not to be prescribed together, morphine and Subuxone. So, I was forced to detox off of those drugs cold turkey last December and I wound up getting extremely sick and wound in in the hospital. My other doctors were not pleased about this at all and my pain specialist blamed it on state and federal regulations concerning long term treatment with opioids. They now have me on Butrans and morphine, but I require a much much smaller dose of morphine since the Subuxone was blocking the morphine and keeping it from helping with the pain. Butrans contains buprenorphine but does not contain naloxone and it is only 20 MCG per hour compared to 8 MG every 3 to 4 hours. So instead of taking 120 MG of morphine every 4 hours I now take 20 MG every 2 to 3 hours at most. I am actually only taking the morphine 1 to 3 times a day now that they have cleaned out my kidneys. They think that I should be good for about 2 to 3 months this time, as long as my ureter tubes stay open.

    I am just really disappointed in the way I have been treated in regards to my pain. As it is now, if my pain gets out of control, my doctor(s) have to admit me to the hospital for pain relief since the local hospital refused to treat me in the ER the last time I was in. My nephrologist and urologist came unglued. The hospital says they just can not take any risks regarding opioids, because of the federal and state regulations. A lot of hospitals are like this.

    On my last consult my primary care doctor had a phone consult with the Mayo Clinic and they could not believe how I have been treated. They recommended a morphine pump and a dual "auto" kidney transplant. They also said that my medical records and history show a high probability that I have burning man syndrome which would make my pain 10 to 100 times worse. So the likely hood is that I will have to go to the Mayo Clinic before they do my transplant, but we will see.

    The biggest issue I have had besides pain, is just the whole idea of thinking regarding Crohn's Disease. Most doctors feel that Crohn's is purely isolated to the small and large intestine or the digestive system as a whole and it is not. It can affect the joints, kidneys, liver, pancreas, throat, stomach and so much more. My recommendation is that you see about going to the Mayo Clinic or UCLA. They have been so helpful.

    This all really scares me though, since my Crohn's doctor is regarded as one of the best Crohn's Doctors in the country and his staff refused to consider my issues and symptoms that developed after I started taking Cimzia, but I still have faith in him. My kidney doctors are awesome. All of them I have two nephrologists and a urologist who are just fabulous.

    I know I am jumping around here a lot, but don't distress. FInd a doctor or doctor(s) who will listen to you. Show them this post even and let them know, that things with Crohn's are easily missed. PAIN does not happen for no reason at all, it's your body's way of telling you something is wrong and it needs help. I can sure relate if you are in pain. I got so sick last December I thought about killing myself. The pain was that bad. But don't go there, find a doctor who will listen, but at the same time, be willing to do whatever they ask. I was open and said "Do whatever needs to be done to lay you at ease that I am telling you the truth. Cut me open, take blood, take anything you need. Heck, I was willing to just have them cut my kidney out with a spoon it hurt so bad. All I wish is that they would have taken me seriously from the start. Now, things are progressing pretty fast which is good, but it should never have taken this long. I sure hope you get some relief. I am so scared of the pain, I can not tell you how bad it was or can get. There were times where I cried for days and thought over and over about just taking a kitchen knife and cutting my right kidney out by myself. No one should have to hurt like that. No one!

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