Chronic abdominal pain

Hey Markh,

I'm sorry that I don't know the answers to your specific questions - but you might use the search feature (upper right side) and look through past threads.

Hopefully someone will come along that knows of your conditions.

A quick google search led me to this site www.thenetalliance.com/index.jsp Just in the 1 minute or so that I looked around, it does seem that pain is associated w/ these tumors.... so I would definitely think your doctor would treat the pain aspect. As for the "right" treatment (narcotics, etc) - I'm not sure. But maybe that site might help you find answers.... or, again, someone here.

Good luck to you.... keep posting.
--Tina

nvrthesame98 said...


All three are known to cause severe stomach pain radiating to your back in functional NET. Nonfunctional generally causes no symptoms.

Also size and growth and malignancy play roles in adding to pain levels. Naturally the bigger the tumors grow the more pain they will cause pressing against another organ.

Im not sure whose doing all the tests but if it's not an Oncologist? Get one and sooner rather then later! They're going to be your best bet for getting the right treatment started as well as your pain management.

I do have the severe abdominal pain and it does sometimes move into my back. That is very painful when it does that.

As far as size, the doctor said around 2cm. There are 2 of them attached to each other and one is slightly larger than the other.

My gastroenterologist was trying to confirm Crohn's with EGD and EUS when he found the tumors with the ultrasound. He took biopsies of my pancreas from going through the bile duct and I have to wait for the lab results from those. Should I look into an oncologist now or wait for the biopsy results and discuss that with my primary and gastro doctors?

I am going to see my primary doctor for pain management today. He is a PA though not an MD so I worry that he can't prescribe anything stronger than Vicodin. The Vicodin doesn't help at all. I've been just suffering with this pain for months now and I really don't want to have to wait anymore time at all. I really hope my primary gives me something that will help today. I've had to go to the hospital multiple times because of unbearable pain so I guess that is an option if my primary can't give me something other than Vicodin.

Thanks for the info! I really had no idea what this is..like i said, the tumors were only discovered yesterday.

EDIT: I was just wondering about something else as well. Could this be why my white blood cell count is always elevated when I get blood-work done? It is usually reported to be 13,500-14,000, but it does go down to around 10,000 after a few days of IV antibiotics(Cipro & Flagyl).

Thanks for the advice. My primary doctor said he couldn't do anything other than increasing my dosage of Vicodin to 7.5/500 and up to 6 pills per day. I might end up letting him do that for now, but he did recommend I go to the hospital because I had signs of bleeding from the biopsies taken.

In the ER they gave me 2mg dilaudid, which helped out a lot better than the Vicodin. As soon as I explained my symptoms they drew a bunch of blood and had some blood ready for me in the blood bank at the hospital. I never did get a blood transfusion though. The black, tarry stools stopped after the first day I was admitted.

I was admitted and released last night. While I was there they managed my pain with IV morphine 4mg every 2 hours. I received IV cipro and flagyl again and the hospitalist prescribed a few days worth of percocet 5/325.

I am supposed to see me primary and gastro doctors again this week and I guess we will take it from there.

I've been in college the last year and a half and had been offered a paid internship with Lockheed Martin for this Spring 2014 semester which would result in a full-time position. With all the symptoms as far as diarrhea and pain I'm having and all the testing and doctor's appointments and hospitalizations, there just isn't any way that I will be able to work. I don't know what is going to happen with these illnesses, but would it be possible for someone like me to get some help by getting some sort of disability benefits maybe only temporarily? I really need to get a job so we have some more income, but I just don't feel like I am healthy enough to be able to keep a job. I feel that I would be taking off work more than I would be able to go. Anyone have any information as to what my options might be?

This is just driving me crazy waiting on test results. It sucks to be told you have tumors on your pancreas but not get anymore info than that.

I am supposed to have an appointment with a pancreatic surgeon soon and I asked my gastroenterologist about an oncologist and I think they are looking for someone. This period of time right now after being told this and having to wait for any real answers is terrible. Everyday seems like a year and I just want doctors to start treatment now.

My last semester in college is starting on the 13th of this month and I have no idea whether I will be there enough to pass or if I should take this semester off.

It is so hard to wait for results for something like this. It also doesn't help that I have a panic disorder that isn't well controlled. I feel like I am on the verge of freaking out and having a panic attack all the time.

Hi Mark,

My situation may be a little different,...but it's also very similar. about a month ago, a tumor was discovered in one of my breasts. It felt like forever, going for scans, and ultrasounds, and MRI's with contrast, and biopsies....the endless barrage of tests.

I know it can feel like each day is a waiting game, an eternity. But these tests help all the doctors on your team make the best, collectively-informed choices on how to treat what's going on with you.

I also applied for disability (I have multiple, complex health issues), and I agree with Vickie, I would definitely start sooner than later. It does take time to process the claims, and you may qualify for supplemental income as well. I procrastinated, and wish I didn't, because it didn't have to be that hard. I personally hired a law firm which does all the leg work, and they get, I think it was 25% of the back pay check, then everything after that is yours 100%. I tried to do it by myself, but I flubbed it up.

But that's me. I'm a very anxious person. In fact, I post a lot on the anxiety forum. I'm on meds for anxiety and panic disorder and I understand how this plays a role in amplifying our "waiting game."

You are not alone in those feelings, the frustration, the waiting, all the tests,...

My surgeon is the one who referred me to my two oncologists. I also agree with Vickie's advice about getting an oncologist on board sooner rather than later.

I ran into similar issues as you did with pain management. I kept complaining of pain, extreme pain, and got prescribed Vicodin 5/500 and it didn't even touch the pain. I think sometimes that some of our doctors have a preconceived notion of what they "assume" our pain should or shouldn't be.

We really do have to be our own advocate. I know it's tough to do when we're anxious and waiting, and we want to trust our doctors to "always" do the right thing about managing our pain,...but sometimes, they need a little encouragement, politely, or, in cases like ours, working with our oncologists. They have a much different understanding and temperament about dealing with our situations.

Keep us posted.


M.

Hi Mark, I did a quick "google" search and suggest you do the same to learn about these tests. The best I can tell the Ocetide Scan is another definitive type of scan recommended when tumors are found in the colon. Your best bet is to call & speak with the nurse at the gastro's office, she can give you info about these tests. Please keep in mind that no one here at Healing Well is a dr and its always best to speak with your dr or his nurse when you have questions like this. That way your get the correct information.

You mentioned filing for SSD. You can do a lot of this by going online to their website. I believe their website is www.SSA.gov. The SSA has claims that are expedited quickly based on certain medical diagnosis. This cuts out the long wait that many have to go through.

Keep us posted on what you find out.....Susie

I don't have a problem with the questions. I'm 28 years old. I've been seeing this gastro doctor since April of 2013. I only have Illinois state Medicaid for insurance. I'm not sure why he is only there like 1 day a week...I think he does a lot of tests over at the digestive health center at the hospital. I'm not sure but maybe he has another office. The office is open during the week when he is not there and there is another doctor in a lot of times, but all they can do when he isn't there is take a message and get back to me when he responds after being in the office.

I think you are right about them waiting for the biopsy and other test results before getting me into an oncologist. I have asked for a referral to one but I don't think they are doing that yet. They are actively trying to get me into a pancreatic surgeon. They originally referred me to the best one in the St. Louis area but he didn't take my insurance. Now they are referring me to one at Barnes Jewish hospital or Washington University hospital over in St. Louis. (I'm not far from St. Louis and these are by far the best hospitals around.)

I've realized that this GI doctor's policy is that by no means does he ever prescribe a pain killer to any patient for any reason no matter what. My primary is a PA, not an MD, and he says he is doing everything he can do. He is willing to increase my dosage of Vicodin from 5/500 to 7.5/500 and increase the frequency, but he says he has to wait until my current prescription is due for refill.

I don't abuse drugs, never have. Well I did experiment with pot a little in high school and alcohol a little in my early 20's, but I never do drugs since and I haven't drank any alcohol for 3-4 years. I was never an alcoholic, just a social drinker. Never had any drug tests come back with any drugs not supposed to be there or my pain meds in larger amounts than supposed to be.

I think maybe my best option right now is to find another primary that is an MD. I just worry that the new one won't give me any pain meds at all to help and refuse to give me the little bit of anti-anxiety meds for my panic disorder(Valium 5mg 1xday as needed. 30/month).

This is the only primary that I feel actually cares and wants to help...too bad he isn't an MD instead of a PA because I really like him.

Another thing that is good is my local ER/hospital has seen me enough that they say they understand what I am going through and I am welcome to come in to the ER and/or be admitted at any time. The doctors in the ER seem to be a little upset at first because it is not necessarily an emergency and they typically don't like people coming in for chronic pain, but as soon as they look at my file they apologize and give me what I need. It is usually IV fluids, something for nausea, and pain. They usually give me something called dilaudid and 2mg of it in an IV. I don't know what that is but it helps a lot. They run blood tests and give me antibiotics if my WBC count is high and any electrolytes if those are low, which they usually are. So I have that help too but it just seems crazy to go to the hospital all the time. I usually go ahead and go though when the pain is so bad I start getting depressed.

My Vicodin RX is due for refill on the 11th, so I don't have much longer until my primary can increase the dosage of that and fill it. I just hope that helps a little more.

Mark, I edited out a phrase, talking about self harm is against the forum rules. Please check out the forum rules that the owner/administrator has for us here at HW. Thanks, Susie

I think the medicaid has everything to do with this taking so long. The MD that my dr works for is actually in a different office about an hour away. I have spoke to him a couple times after office hours from having him paged, but I have never actually seen him.

I did and do have active symptoms that could be the Crohn's, but my GI says the tumors could also be what is causing the symptoms. I'm really not sure whether I like him or not yet. Sometimes it seems like he doesn't want to help, but that could also just be because of his policies or that I am on medicaid. I know he is a specialist and has a lot to do, but sometimes I guess I wish he was in the office more.

I apologize for the comment. I guess I thought since I was only sharing a thought and pointed out I had no intention of acting on that thought that it was okay, but I guess it was too graphic...sorry about that. I really don't think I need any help in that area, they are just things that go through my head when it gets really bad but it isn't something I would ever seriously consider. I'm sure most here can understand if they've ever been to the point that they just can't stand it anymore.

It sounds like I am really lucky that my hospital helps me. I'm very thankful when they do help and let them know how thankful I am every time I have to go. I don't know if it is because of what is in my file or what because the doctors and nurses are always making comments like "You're only 28 and have pancreatic cancer?" and things like that like they feel sorry for me or something. I really don't want anyone to feel sorry for me I just want this to be figured out and treated. I would give anything to be 100% healthy and never see doctors or a hospital again as long as I live.

Mark, if you don't care for the gi dr then once things start moving along with the surgeon & perhaps after that, may be a time to look into a new gi dr.. You absolutely need to like & trust whatever dr cares for you. I do know having Medicaid can really drag things out because not every dr will take it. Since you have such a good relationship with the ER drs & nurses, that would be a very good source to finding a new gi dr. or pretty much any kind of a dr at this point.

I can see how the dr says he is not sure which is causing what at this point. I know from my own problems with crohns & UC they are both difficult diseases to handle. I have had a resection surgery and thought my troubles were over only to end up in worse shape. Regardless, whether it made me better or not the surgery was an emergency because of an abscess so there was no choice at that point. Some people can achieve remission on some of the older drugs & some don't. I am still hoping for remission one day. I have done Remicade & Humira & still looking for it, lol.

Yes, you are extremely lucky the ER will take care of you. There are new guidelines & rules in place on narcotics & pain mgt, with the DEA involved these drs are running scared of getting their license yanked, or to have the DEA show up & audit their files, pharmacies are refusing to fill scripts for pain meds for people, yes it is really a difficult scene these days.

No problem on the comment, hey we have all been there at one time or another. That comes with the territory and a person can only handle so much some times. I guess that is what makes us human. But, regardless check out the rules the owner has listed when you can. Having rules in place keeps this place safer for all of us.

At some point you may end up with a pain mgt dr. If it comes down to needing better pain control, never be afraid to ask to be referred to a pain mgt specialist. I have a feeling once you get in with this surgeon you are talking about all of this will start to mesh together for you. But it will not hurt a thing to ask to be referred to a pain mgt dr.

Educating yourself about your condition is going to be one of your best lines of defense. I know drs can sometimes be the worst at spending time with patients, however, that is where the internet comes in handy. You do have to be careful of sites that are not accurate, keep away from Wikpedia, that place drives me nuts with some of the crap they put out. One of the best sites around is the good ole Mayo Clinic.. For cancer related issues I suggest looking at MD Anderson's website if you do not find what you want at the Mayo Clinic.

Take care......Susie

Evedar, we do not support asking people for personal information on this forum and Mark I'm currently looking into this member and your answer was the right one. Don't ever give anyone your not sure about any personal information. You can and we do recommend making a HW mailbox and you can do that at the top of the page. Only HW members will be able to use it and it shows nothing personal to anyone.


On to you, I would certainly go ahead and take the med increase offered by the PA. He's got to have a supervising MD and he's using that MD's DEA number to write narcotics and most Drs limit what their PA can write or not write because he is taking sole responsibility for that PA.

It's possible that the surgeon will change everything anyway so for now at least you will have more pain relief. Good the ER helps just remember to use it wisely and only when you can't handle more.

Its unfortunately the problem everywhere with medicaid, finding more and more Drs not taking it. A Medical university is a really good choice when your condition requires a medical team approach. They're all under one roof and communication is so much easier. Therefore making your care run more smoothly.

So get on the SSD application, take the added med offered, not worry about a PCP or changing just now as the new Drs coming aboard are most likely going to trump him anyway.

Those are my suggestions. We're here to help anyway we can.

Mark, that poster was most likely a spammer. I clicked on his/her name because it showed he/she had 4 posts here at HW and those other 3 posts had been deleted. They were either deleted by the poster or another mod found those posts in other forums and they were spam. We can ban any of the ones that are spam & also delete their post. It was very suspicious for sure & you handled it perfectly. Never give out any personal info here at HW.

We all understand where you are coming from about the drs. It is a shame that we have to left floundering around on our own because drs do not give us the info we need. I do think once you get the biopsy results things will move along quicker and you will have better communication from all of your drs, I sure hope so.

Keep checking in here at the forum, you don't have to wait until you see a dr to come & post. Its a good place to come and let your hair down or share stuff that is bothering you. Sometimes just sitting down & typing things out helps, especially if it is bothering you. Everyone here will lend an ear & offer support.

The waiting for answers game can drive a person mad, lol. None of us are good at waiting. I don't care what we are waiting on, we just do not like it.

Be sure to check the SSA website on the catastrophic medical conditions they have listed to see if your diagnosis is on that list. If it is then you can file for it & not have to go through the usual waiting period. There are certain earning requirements to be eligible for SSD, if you do not meet the earning requirements then you may be eligible for SSI. They know this info by your social security number.

Take care.....Susie