Help...at my wits end and need some support

Pancreatitis
#1

I am still relatively new to this forum but feel like I’m at my wits end. My condition doesn’t seem to be as bad or severe as most of you are. Here’s a little background information on how I’ve gotten to this point. In December of 2005 had ovarian cysts on the right, it was so big that the doctor decided it had to be removed pronto, what was supposed to be a 30 minute surgery with only 3 days off turned into 3 hours and 6 weeks off(okay I only took 3weeks but I was also transferring departments and would be doing desk work training for sleep lab technician).

Well when the doc went in she found out that my entire stomach contents was glued to the lining of my abdominal wall. She spent a lot of time scraping and removing as much adhesions and scar tissue as she could. She said it was evidence of a massive infection sometime in the past. I have never really been sick and couldn’t remember a time when I had a massive infection of any kind.

March of the next year I started feeling sick to my stomach and was really bad every time I tried to eat anything(sounds familiar huh). September of that year they decided that it was my gallbladder (it had completely quit working, no stones or anything just stopped working). They said that was my problem and a simple surgery to remove it would make me feel better. They removed it and, you guessed it, didn’t feel any better. Fast forward to march of the next year (2007). I was finally sent to a GI specialist and he thought I might have CP, sent me to St Louis, MO for a diagnosis.

I actually did start to feel better, until about September of the same year. Another round of hospitalizations (stent placement and removal). Doctors said this should fix you even though we can’t tell you why you have this disease or why your having such difficulty with this. Well didn’t feel much better. Started missing work due to pain, nausea, etc. (I’m guessing you guys know the routine). I keep thinking I’m only 34yrs old, I’m too young to feel this way!

Well doctor pretty much told me he didn’t think it was my pancreas causing the problems and sent me to a pain specialist. Well now I’m informed due to all the “necessary” scopes and procedures I have nerve damage (he called it a trigger point). Well after explaining to him that sometimes it would take massive amounts of hydrocodone to dull the pain(does anything actually get rid of it completely, I’m beginning to think not) he started to press on my abdomen. In the top middle radiating out to the right side was so bad all I could do was lay there and cry. He seems to think that it’s the middle top abdomen that has the damaged nerve since it’s right there where they have to pass the scope and do other procedures. He gave me a nerve block and sent me home with gabapentin. He also told me to quit taking the hydrocodone due to the dangers of addiction.

The next day(Tuesday of this week) was so bad that I ended up in the ER with some hope they could do something. Everywhere I turned for help seemed to turn me away. Primary doc wouldn’t even come near me, GI specialist said call the pain doc, ER doc said call the pain doctor. I had been trying to reach the pain doctor all day for some help. I was at my wits end when his nurse finally answered the phone and told me that it was withdrawals from the hydrocodone and what prompted me to stop it cold turkey in the first place.

At this point I will admit I shouldn’t went off the way I did, but I’m sure many of you if not all can understand when pain is that bad for any amount of time your tact and finesse goes straight out the window. I informed her that they had told me to stop taking it due to the possibility of addiction. Ok now I’m supposed to wean my self off of it. Since then they have been a bit more helpful. I’m currently up to taking gabapentin twice a day for 3 more days then up to 3 times a day.

The pain is still ever present but it is much more tolerable (as long as I don’t want to do anything more than get up to go to the bathroom). Between the two recent hospitalizations for this I had switched employers to a hospital that was a lot closer to home. They have been as wonderful as they could be. I do feel grateful for all their understanding with this condition and the amount of time I’ve had to miss, sometimes on short notice.

Well like any corporation they have to think of the bottom line and even my bosses have to answer to someone. I now have no job to go back to if I do get better. At the beginning of this year we lost my husbands mother to COPD (emphysema-double pneumonia). While it devastated us all, she was one of the most generous human beings I have ever had the privilege of knowing and loving, it still hurt really bad when she passed away.

His parents don’t have any insurance and are so much in debt that most of the kids had to try and pay as much as we could to pay for the funeral. One of my husbands brother (black sheep) didn’t even bother to show up for either of the viewings(had one for immediate family then one for everyone) or the funeral! I’m still pretty ticked off about that.

So now I’m sick again and unable to work, no job to go back to when I do get better (I’m trying to keep a positive outlook), behind in most of our bills (have exhausted all of our disposable money and loans and even loan on husbands retirement), and still in pain most of the time with what seems like no end and hope for recovery. The pain doctor mentioned he might do a celiac plexus block in a couple of weeks if no relief is found with the other modes of pain management. I guess I’m just seeking some help.

This condition seems like it can take you to the point of not caring if you loose everything, you just want to feel better and you don’t have the energy to worry about anything else. I’m so sorry that this has turned into such a rambling mess and pity party, but I truly don’t know what else to do. I’ve been trying to find some kind of employment that I could do from home with a flexible schedule to allow for the times when this disease takes us down to where we simply can’t do anything.

I guess I’m just at my wits end and simply don’t know what else to do right now.

Any ideas on how some kind of relief can be found? Any one else been told they have nerve damage? My husband says I should try for disability since there’s no way I could work in any kind of normal environment again. I just don’t know anymore.

The only thing that keeps me going is our children, there is no way I would abandon them, or put them through more grief, especially since we’re all still grieving for his mom.

#2

Wow, Lindia, I am sorry that things have been going so poorly for you. Sometimes it does seem as if everything that can go wrong, does. Unfortunately for the general state of things in your life at this moment, I can only offer cliched platitudes. Things like: “Take it one day at a time.” “All things are transient.”, etc…

On the drug front, I can at least offer some knowledge and insight. There are three things that can happen with long-term narcotics use: tolerance, dependence, and addiction. These terms are not the same, yet ignorance and misinformation regarding opioid medication has been promulgated by the government for unknown reasons (probably so they can continue to waste taxpayers’ dollars in that sinkhole called the DEA). Tolerance is mainly associated with the fast-acting opioids.

This occurs with prolonged daily use of a fast-acting opioid. Tolerance has to do with the way the body reacts to the medicine over time. Someone who is taking fast-acting opioids and other narcotics over an extended period of time will often find that the starting dose loses its efficacy. Over time, larger doses are needed to achieve the same level of pain reduction. when this happens, it is called “tolerance”. While not as common with extended-release forms of narcotics, one can develop a tolerance to these narcotics as well.

Physical dependence is another aspect of long-term narcotic use and can even occur with the extended-release form of narcotics. What is meant by physical dependence is that your body has become so accustomed to the narcotic that an immediate (as opposed to tapered) cessation will cause the body to go into withdrawals. Lisa has written quite a bit about withdrawals on another thread. Psychological dependence is the perceived need for a particular medicine or drug. While the body isn’t dependent on the medicine, the person feels like he needs the medicine/drug. A person experiencing psychological dependence will often become very withdrawn and depressed when the medicine/drug is no longer available to him. In severe cases there can even be suicidal ideation and/or actual suicide attempts. A good example of a drug that can cause psychological dependence is marijuana. Psychological dependence is closer to addiction than any of the other issues discussed so it is a good segue to that topic.

Addiction- ah yes, the demon, the scare factor used by parents and the government to try to keep people from using drugs. Addiction is real and it is bad and has ruined many people’s lives Addiction is a feeling of needing the medicine/drug so much that a person will do things to get his “fix”- anything from simple stealing, to robbery, and even murder. The drug takes over every aspect of that person’s life. The person will forfeit his job, family, and even freedom in an attempt to procure his drug of choice. Think of addiction as psychological dependence magnified exponentially.

The thing about people like us with chronic pain is that we usually don’t get any of the euphoric sensations that a person who is abusing the medicine or drug will feel. In fact the studies done on people with true chronic pain (as opposed to a “drug-seeker”) have shown that the chronic pain people are no more liable to become addicted to a drug than the [general population].

It is important to work closely with and be honest to the healthcare provider who is your pain management person. Depending on how often a person is in pain during a given week will determine the strategy for attempting to control the pain. I could not find any of the so-called pain specialists who were willing to treat visceral pain. We even drove up to Seattle, three hours one way!) to see one. He flat out told me that he “could not” do anything about the pain from the cp and he adroitly and consistently steered the conversation to my back issues and even ordered an MRI for my back!?! What was really aggravating was that h had a smirk on his face during the whole meeting! Of course, I never went back to him. Luckily my primary care physician agreed to be my pain specialist and even better was that her partner has a patient with CP so she had some ideas. What we decided was to do a relatively low dose of Kadian which is an extended-release form of morphine sulfate. I take 40 mg twice a day. For really bad days she gives me 60 15 mg pills of Oxycodone that are supposed to last for a month, but they never do. To keep from losing the only provider I have who will help me manage my pain, I never bother her. I don’t call her the minute I run out of the Oxycodone. I grit my teeth and hope that my pancreas behaves for the most part. I am including snippets from a couple of articles.

As part of a well-intentioned, ongoing “War on Drugs” the majority of the media and law enforcement community continue to promote a very limited view of pain medication and its use/abuse. The one-sided portrait they paint includes only negatives such as misdirected prescriptions, illegal use/abuse and addiction, not to mention the horrible consequences associated with such behaviors. Their crusade to educate the public and medical community of the perils of prescription drug abuse in some situations causes much more harm than it does good for it drives pain sufferers away from the proper treatment of their condition.

Opioid medications can be extremely effective against many types of pain. They are, among many other uses, one of the last lines of defense when back or neck surgery is unsuccessful. As other medicines, from insulin to aspirin, they too have side-effects and must be carefully managed and taken only as prescribed.

A couple of factors, including the fear of their patient becoming addicted and/or a fear of sanction or prosecution, substantially reduce physicians’ willingness to prescribe narcotics and, to some extent, the patient’s willingness to accept narcotic therapy. These have been exacerbated by the recent hysteria in the media surrounding the OxyContin.

Culled from about.com

Some medications used to treat pain can be addictive. Addiction is different from physical dependence or tolerance, however. In cases of physical dependence, withdrawal symptoms occur when a substance suddenly is stopped. Tolerance occurs when the initial dose of a substance loses its effectiveness over time. Addiction and physical dependence often occur together.

People who take a class of drugs called opioids for a long period of time may develop tolerance and even physical dependence. This does not mean, however, that a person is addicted. In general, the chance of addiction is very small when narcotics are used under proper medical supervision.

Culled from WebMD.com

As for your concerns about venting/whining too much, don’t worry. That is a part of what this site is about. We are all here to support each other and help each other. Most of us have vented or whined about stuff on other threads. Wishing you a pain-free day!

Hugs,
Warren

#3

Hi Warren,

I really appreciate you taking time and educating people about the medications, their effects, side effects, how to take them, what is dependency and what is addiction etc.I want to add one thing here what my pain specialist told me when I told him that whenever I used to get admitted in the hospitals some nurses used to control my medication saying I’ll get addicted. Sometimes my GI doctor, he is a wonderful doctor and gave me brotherly love, cares about me very much but sometimes he’ll say I’m getting addicted to these medications. Then my pain specialist said, ‘*Do not let anybody say that you are addicted to medications. Because addiction is something if you are doing to get high and in your case you are taking these medications because you need them and you need to function and take care of your family, this is not addiction. This is dependency. There is a difference between both the things. *Yes, you’ll get develop tolerance and they should use the word you’ll get used to these medications, never let anyone tell you or call you that you are an addicted person.’

When I went for check up my GI doctor used the word again and I told him about the conversation and he said, ‘they know better because they are the Pain specialists.’ And when nurses used to cut down the medication I used to tell them that, I get the prescriptions from the Presbyterian Pain Clinic and the Pain Specialist gives me these medicines and the doses are also prescribed by him. So, don’t cut down or reduce the doses because they won’t work and there is a chance of going into withdrawals and the purpose of my hospitalization is to get better not to get worse and I hope you understand.’. Nurses who know me for a long time they accepted it and the ones who don’t know me never tried to cut them down.

I know some people don’t like to take lot of medication. I fought with the doctors when they put me for the first time on narcotics. If they prescribed to take two times a day I used to take just one and when pain used to get worse I used to take two and then reduce it again when pain used to get better. So, the home care people and the doctors had to discuss and send a psychiatric nurse to talk to me to convince to take the medicine regularly because if I keep taking sometimes and reducing them they don’t work properly. This nurse came for two months every week and finally made me realize that if I don’t take the medication regularly and when the pain gets worse if I take the medicine then it won’t work immediately and I have to take before it gets worse. At that time I had Peustow procedure but it didn’t do anything, they found out that the head and body of Pancreas were totally damaged became like rocks, that’s what was giving me so much pain. Until I gain weight and my nutritional values improve I have to take medication regularly to keep it under control. Then they can do Whipple surgery. They did when everything improved after almost a year later I think. I just wanted to share this because lot of people prefer to be in pain rather to take pain medications. *If I’m able to keep myself busy and try to keep the house environment as normal as possible,stay out of the hospitals it’s because I’m taking medication under the supervision of Pain specialists and when the time comes maybe in couple of years or next yr or little bit later they’ll help me to wean me off them slowly. I have confidence in them. *

Thank you so much for sharing your medical knowledge with the people here. It really helps everybody I’m pretty sure.

Hope you are doing well and take good care of yourself.

Lots of love and hugs,
Durga.

#4

I am so sorry for your many losses: your mother in law, your health,
your job and, possibly, your financial future. I, too, have been there
and this disease is an unfortunately LONG diagnostic process.

I am struggling to say the moat absolutely perfect thing to say that
could ease things for you and I can’t.

Do you have a mental health therapist and psychiatrist to work through
all of this with? Believe it or not, the emotional toll of this myst
be, at times, more than you can bear. Do you feel guilty that you
became ill and that it has put you and your family in a situation that
would not have happened if . . . ?

Should you want to talk to someone, I would welcome your call and
would be more than happy to work with you for as much and long as you
wish. I actually helped one person for 10 months with 5-6 hours per
day on the phone. While this was a particularly difficult situation, I
don’t think that you would use me THAT much. I am here for you and you
are in my thoughts. My phone is (916) 364-1743.

Take care of yourself and take a nice, long bath with the bubbles and
everything!!

Anyse

#5

Thank you to everyone for reaching out to me in my moment of weakness and despair. I guess I just let everything get to me all at once. I am doing a bit better and trying to work with all the doctors. Thank you for all your support and words of advice, especially about the medications, I found it (as many others might have as well) very informative and helpful. Taking it one day at a time and one problem at a time as well. Asking me about feelings of guilt, boy did that hit the nail on the head! It has bothered me for a long time now, feeling like we are going to lose everything and it’s all because of me. Never really put much thought into it except to try and find solutions for me being out of work and putting such a physical, psychological, and financial burden on everyone around me. Thank you for helping me to see the error in my way of thinking, I might take you up on the offer of help but right now I just want to try and think about all of the suggestions that I have received and find some kind of action plan that would involve my husband. Again, thank you all for the kindness you have bestowed upon me.
Hugs, Prayers, and Good Thoughts,
Lindia

#6

Lindia

As you know, you and I have very similar stories. I just returned from a date with my pancreatic specialist who did mention a neurological component of my CP. He very much wants me to explore having a Thorascopic Sympathectomy. At first glance, I was extremely reluctant but after I spoke to one of my pain management specialist friends, this seems like a very viable option. I have had 3 celiac plexus blocks. Two worked (actual blocks) and one did not (a neurolysis with alcohol). The unfortunate thing about the blocks is they are temporary. Steroids only work so long before it needs to be repeated. The other issue is that I still can not eat without pain, but at least I do not have severe pain when I am not eating. Doc K is not liking the idea of having to place the feeding tube but due to my continued weight loss, this is probably in the near future for me. I am going to try to convince him to place a port instead and do TPN vs enteral feedings, which we did briefly discuss.

CP is a very misunderstood condition and those of us with the affliction need to educate everyone about it. Sounds like you may need to find a pancreatic specialist who will not pass you off to someone else. They are rare but they are out there. Mine is in Connecticut and he is absolutely wonderful. There are also some in Boston who are supposed to be very good (Dr. Bates I believe is a name I was given) along with Philadelphia amonst other major teaching institutions.

Good luck and prayers for pain free days

Teresa

#7

Hi, Lindia–

You’re very special and very strong. Stay determined and remember that you CAN get through anything!

(Fairies will be on their way Monday-- I hope they’ll offer some help; they, along with some Fairy Dust will bring some extra hugs and support for all you’re dealing with.)

Love and hugs, as always–

Lisa

#8

Thank you everyone for the wonderful support and information. The GI doc says that all my lab work and CT scans came back good, pancreas is stable. WOOHOO! He says that my diagnosis is now IBS with constipation, CP that is stable. The pain doc says that it is nerve damage. If I had known what all those procedures and surgeries would lead to I’m not sure if I would have had them done. Hard choice to make, chance of causing other injuries or not being able to eat with all the pain and everything else that goes with it. The pain doc is going to do a celiac plexus block on the 4th of march. I’m kinda nervous but hope it will help with the pain. Again thank you all for everything!
hugs, prayers, and good thoughts,
Lindia

#9

Great news, Lindia!!! Remember that stable chronic pancreatits is still pancreatitis so don’t go jumping into a pool of cream-covered milk chocolate! lol Once we hit the chronic stage, the damage is there for good. Stable is very awesome so just keep doing what you are doing regarding diet and meds, okay? Congrats!!!

Hugs,
      Warren
#10

Thanks so much! My husband is still convinced that what I really need is about a year off from working to let my body heal from all the trauma. Fingers crossed for more good news. Thank you for warning me to not go off the deep end and make it bad again. I think sometimes when we finally start to feel better we are so in need of a normal life that we become our own worst enemy. I hope that all of you can find some relief and I will continue to pray for you.
Hugs, Prayers, and Good thoughts,
Lindia

#11

Hi Lindia,

I am sorry that you have had such a bad run of things, I am so sorry I haven’t been much support, as I have been pretty sick myself. I couldn’t agree more that we are our own worse enemy, when i feel good i think i can move the world, but what a rude awakening we get when all the pain is back and worse then before. I wanted to let you know that my thoughts and prayers are with you.

Big Hugs and Prayers-----Barb :slight_smile: