Relatively NEW and a bit frustrated

[trapstar4.4]

first post! sorry it is so long... cliffs at bottom

Hey there, my name is Craig. I have been a lurker on this forum for a month or so and decided to sign up. was preliminarily diagnosed with UC back in October 2011, then was later changed after 2nd colonoscopy/pathology results to be "indeterminate" with the type cited as ileocolonic crohns (mild/moderate)

medications (in order):
lialda - worked for about two months, was feeling good then it just all of a sudden failed
apriso - didnt notice much of a difference, although i didnt experience pain, just the other symptoms
pentasa - no dice, pain returns
cortifoam - seemed like an extra supplement for inflammation, no big difference noticed
prednisone - couple weeks run, which seems effective for pain, but i ran out of that
colazal (current) - no dice so far, lots of pain


supplements
fish oil - been taking for years, just because
mens health mutli V - years
Vitamin D3
Primal Defense probiotic - have some, but havent been consistent in taking it


currently, I am pretty much back to where i started when i first got my diagnosis. Months ago, I was prescribed with librax for discomfort, but that stuff doesnt seem to do anything.

so now i work in the corporate world, 45 hours per week avg. and I HAVE to take a small piece of my gf's prescription pain meds everyday before work or else i wouldnt be able to do anything. I have been cycling through medications with my doc (had the colazal called in about two weeks ago).

so my next doc appt is next week and I am REALLY going to need his help this time. Outside of my gf's pain meds, I wouldnt be able to function and I HAVE to work, or im screwed obviously. I wish he would prescribe me with a small pain medication to help me get by while we cycle through all of these, what amount to be useless medications, but I have read that GI docs dont like to prescribe narcotics. Im pretty sure my primary care doc would tell me to defer to my GI for this thing (GI has already said that he doesnt like prescribing narcs), so it would be a useless circular pattern.

Im going to ask him for something that will kill off my pain because I cant continue to live this way. and if he does nothing, then i will really need to find a way to get my own stash of meds so that i can go to work and function like a normal human being. It just makes no sense to have to go through life with all of this pain and discomfort while cylcing through tons of meds that arent working

cliffs -
- diagnosed in October 2011
- have been cycling through meds, nothing is working
- pain is pretty bad, but i supplement them with narcotics so that i can function through the workday.
- I shouldnt tell my doc about the narcotic usage should I? since they seem to have something against CD/UC patients and their usage of these meds
- the bottom line is that we have to figure out something for pain. are there any other alternatives that I could suggest so that I can get through the work day?
- any other advice for my situation? try to find a primary care doc who will at least give me a stash of pain meds? i dont need a ton of them, nor even powerful meds. would be nice for when i know i have a stretch of meetings at work, and situations where I cant have all of these issues.
- wondering if biologics will be my next step. it's so bad that i no longer care about risks
- I hear a lot of good things about Humira on here...hmmm

help


P.S. I am a forum junky, so I will presumably be around for a long time, seeing as how this condition obviously isnt going away. 1st of many posts. brb going to dig through old threads and such

 

[SarahAnne]

Hey, Craig & welcome to the forum!!

Unfortunately, most people who are newly diagnosed go through what you're going through, the constant battle to find meds that are working.

While it does seem that most GI docs don't want to prescribe narcotics, there are times when regular tylenol doesn't cut it and most other OTC pain meds are not good for those of us with gut problems.

I would definitely tell the GI about having to take a few of your GF's pain meds. If you make it clear to him that you are in pain, can't make it through a day at work, etc. then he might take the situation more seriously.

My last GI was terrible about pain meds, the last time I was in ER under him the ER doc had put me on morphine. I had a stricture that was only 5mm wide, everything including liquids hurt so bad. My GI came in & changed my IV pain meds to tylenol only.

Narcotic pain meds can mask GI symptoms, slow down motility and become addictive. As long as the patient (you) and doctor are aware of the negatives, pain meds can make life much more livable. Ask your doctor for specific reasons why he won't prescribe any for you. I found that heat helps me, if you can manage it at work sometimes a hot water bottle or heating pad can help take the edge off.

Good luck!

 

[trapstar4.4]

Hey, Craig & welcome to the forum!!

Unfortunately, most people who are newly diagnosed go through what you're going through, the constant battle to find meds that are working.

While it does seem that most GI docs don't want to prescribe narcotics, there are times when regular tylenol doesn't cut it and most other OTC pain meds are not good for those of us with gut problems.

I would definitely tell the GI about having to take a few of your GF's pain meds. If you make it clear to him that you are in pain, can't make it through a day at work, etc. then he might take the situation more seriously.

My last GI was terrible about pain meds, the last time I was in ER under him the ER doc had put me on morphine. I had a stricture that was only 5mm wide, everything including liquids hurt so bad. My GI came in & changed my IV pain meds to tylenol only.

Narcotic pain meds can mask GI symptoms, slow down motility and become addictive. As long as the patient (you) and doctor are aware of the negatives, pain meds can make life much more livable. Ask your doctor for specific reasons why he won't prescribe any for you. I found that heat helps me, if you can manage it at work sometimes a hot water bottle or heating pad can help take the edge off.

Good luck!

ah! thank you so much! it makes sense to convey to him about the measures that i have had to take, so i will definitely do that. and yeah i tried the tylenol, hoping to god that they would be the quick fix, but yeah...nothing there. sounds like a plan, thanks for the plan. and will look into the heat pads. my gf has interstitial cystitis and endometriosis, so I can definitely grab heating pads from her.

thanks sarahanne.
i need to get a signature up and running. i like reading other sigs (although scary) with their info like that, and it will help me keep track of all of my things

 

[Angrybird]

Hello Craig and :welcome: It can feel a long hard slog when you are trying to sort out a working treatment plan so I agree about chatting with your doc about a med to help with the pain whilst this is being looked at. Also it cannot hurt to go on a low res diet with mushy foods/soups to help calm the bowel down at least perhaps until you have a working med on board.

I do hope you can be feeling better soon hun, pls keep us updated.

AB
xx

 

[trapstar4.4]

Hello Craig and :welcome: It can feel a long hard slog when you are trying to sort out a working treatment plan so I agree about chatting with your doc about a med to help with the pain whilst this is being looked at. Also it cannot hurt to go on a low res diet with mushy foods/soups to help calm the bowel down at least perhaps until you have a working med on board.

I do hope you can be feeling better soon hun, pls keep us updated.

AB
xx

thanks AB, Im certainly going to look into that. Im open for anything. lol

 

[Ihurt]

sorry you are in so much pain. It sucks when doctors wont listen. Most doctors will not give out any pain meds (they have to fill out a ton of paper work whenever they do prescribe them) so they do not want to go through all that. It is so unfair, I know. Noboby should have to be in pain.

I also have Interstitial cystitis so I do feel for your GF, it is awful. Yes, try the heating pad, it is my god send in terms of my IC and my stomach.
I hope you get some relief soon.

ah! thank you so much! it makes sense to convey to him about the measures that i have had to take, so i will definitely do that. and yeah i tried the tylenol, hoping to god that they would be the quick fix, but yeah...nothing there. sounds like a plan, thanks for the plan. and will look into the heat pads. my gf has interstitial cystitis and endometriosis, so I can definitely grab heating pads from her.

thanks sarahanne.
i need to get a signature up and running. i like reading other sigs (although scary) with their info like that, and it will help me keep track of all of my things

 

[JDTM]

Craig, I certainly hope that you're prescribed something soon that will help with the pain, be it painkillers or a more substantial biological treatment that will perhaps bring you some relief instead of just treating the pain symptoms. I'm really new to this myself (you have about a 4-month head start on me), and I'm trying to figure out whether or not the first round of attempted meds is working... and I'm sort of thinking it's not clicking for me just yet. It's discouraging, for sure, and I completely understand that part of it.

Today is the first day that I actually went home from work because I got sick. My boss sent me home, actually -- she actually knows about my Crohn's diagnosis and she understands (her husband has Crohn's) -- but it still wasn't a good feeling. It's one thing to schedule some sick time to go to the doctor to deal with this stuff, but it's not a good feeling to have to leave early. Like you, I work an office job; I work in higher education, so it's probably not quite as stressful as working for in the corporate world (depending on the time of year), but I feel like I can relate. I was pretty much bulletproof, almost never using any sick time for the first three years, but this past year has been much rougher and I just want some relief. Not dealing with crazy physical pain on a daily basis, but I've had some acute stomach pain over the past year that landed me in the hospital a few times pre-diagnosis -- if your pain is anything like that, then yeah... not good. Out of curiosity, are you having pain in your stomach, lower in your gut, or elsewhere?

Anyways, I don't mean to complain or hijack your thread on account of my lousy day! Just hoping you'll find some comfort in knowing that there are people out there who are in similar situations. Not sure how old you are but I'm guessing you might be a peer or maybe a little bit younger (I just turned 32 myself).

 

[trapstar4.4]

sorry you are in so much pain. It sucks when doctors wont listen. Most doctors will not give out any pain meds (they have to fill out a ton of paper work whenever they do prescribe them) so they do not want to go through all that. It is so unfair, I know. Noboby should have to be in pain.

I also have Interstitial cystitis so I do feel for your GF, it is awful. Yes, try the heating pad, it is my god send in terms of my IC and my stomach.
I hope you get some relief soon.

ah, i see! that makes so much sense. i asked my gf about this yesterday and she definitely agreed. showed me her prescription for pain pills and the paper looked completely different. the doc has to stamp his DEA number on it and everything. wow
and good information to know before I go in and speak with the doc. yeah I know what you IC patients go through. she definitely has some rough times.
dont tell me you have some crohns (or any type of IBD) AND IC? no way right? my god that would be insane

Craig, I certainly hope that you're prescribed something soon that will help with the pain, be it painkillers or a more substantial biological treatment that will perhaps bring you some relief instead of just treating the pain symptoms. I'm really new to this myself (you have about a 4-month head start on me), and I'm trying to figure out whether or not the first round of attempted meds is working... and I'm sort of thinking it's not clicking for me just yet. It's discouraging, for sure, and I completely understand that part of it.

Today is the first day that I actually went home from work because I got sick. My boss sent me home, actually -- she actually knows about my Crohn's diagnosis and she understands (her husband has Crohn's) -- but it still wasn't a good feeling. It's one thing to schedule some sick time to go to the doctor to deal with this stuff, but it's not a good feeling to have to leave early. Like you, I work an office job; I work in higher education, so it's probably not quite as stressful as working for in the corporate world (depending on the time of year), but I feel like I can relate. I was pretty much bulletproof, almost never using any sick time for the first three years, but this past year has been much rougher and I just want some relief. Not dealing with crazy physical pain on a daily basis, but I've had some acute stomach pain over the past year that landed me in the hospital a few times pre-diagnosis -- if your pain is anything like that, then yeah... not good. Out of curiosity, are you having pain in your stomach, lower in your gut, or elsewhere?

Anyways, I don't mean to complain or hijack your thread on account of my lousy day! Just hoping you'll find some comfort in knowing that there are people out there who are in similar situations. Not sure how old you are but I'm guessing you might be a peer or maybe a little bit younger (I just turned 32 myself).

no worries, I like to know your history and what is going on. correct, i turned 28 in early January. diagnosed at 27 (around the ripe age for it i was told)

and yes you know EXACTLY where I am coming from. I used to be bulletproof also, and I think this is the part that gets me down. you look at how things used to be, and how they are now and it is like night and day. kinda depressing actually. good thing your boss understands, like mine (i believe) because i think that is HUGE. but yeah, no getting around that crappy feeling of "i couldnt hack it today".

looks like the name of the game for us new folks is to keep our heads up and keep searching. It makes me happy to think of the day where I can say that i have this under control. gonna try my damnest to get there


*edit
pain is in my lower gut maybe 2 inches below my belly button.
horizontal line of pain

 

[JDTM]

Yep, right there with you man. I think I'm struggling more with the mental pain than the physical -- it sucks to have cramps and symptoms, sure, but there's definitely a link between symptoms and mental stability for us newbies. Head up is the name of the game, but I'm not ashamed to admit that I think I need some help in that arena, and I'm looking into perhaps getting some meds just to "even out" on the bad days. (I think there's definitely a correlation for me between physical symptoms and depression/anxiety, because on the days that I'm feeling OK, my thought aren't all doom-and-gloom; it only rears its head on the days I have symptoms or if I get the sense that I'm somehow getting worse/not making progress. Keep this in mind if you feel like you're in a similar situation.)

Better days are ahead -- the frustrating part is not knowing when they're going to arrive, exactly. Until then, on with the search!

The other thing to keep in mind is that we are relatively young, and new treatments seem to be cropping up from time to time -- it sounds cheesy, I know, but there's definitely hope! (I just looked up some stuff for an example -- I think Humira really only got approved in 2008 or so, and it's already pretty commonplace and being used with some success by a lot of people.) In addition, quality of life is the name of the game now -- I am trying to not just treat the symptoms and get them to stop (although that would be nice), but also to keep in mind that the goal is to treat the entire person and just feel better in any way I can, be it mental or physical. Just started taking fish oil, and I'm looking into acupuncture... because, well, why the hell not!

Be well, and keep us updated!

 

[trapstar4.4]

Yep, right there with you man. I think I'm struggling more with the mental pain than the physical -- it sucks to have cramps and symptoms, sure, but there's definitely a link between symptoms and mental stability for us newbies. Head up is the name of the game, but I'm not ashamed to admit that I think I need some help in that arena, and I'm looking into perhaps getting some meds just to "even out" on the bad days. (I think there's definitely a correlation for me between physical symptoms and depression/anxiety, because on the days that I'm feeling OK, my thought aren't all doom-and-gloom; it only rears its head on the days I have symptoms or if I get the sense that I'm somehow getting worse/not making progress. Keep this in mind if you feel like you're in a similar situation.)

Better days are ahead -- the frustrating part is not knowing when they're going to arrive, exactly. Until then, on with the search!

The other thing to keep in mind is that we are relatively young, and new treatments seem to be cropping up from time to time -- it sounds cheesy, I know, but there's definitely hope! (I just looked up some stuff for an example -- I think Humira really only got approved in 2008 or so, and it's already pretty commonplace and being used with some success by a lot of people.) In addition, quality of life is the name of the game now -- I am trying to not just treat the symptoms and get them to stop (although that would be nice), but also to keep in mind that the goal is to treat the entire person and just feel better in any way I can, be it mental or physical. Just started taking fish oil, and I'm looking into acupuncture... because, well, why the hell not!

Be well, and keep us updated!

most definitely. I am actually researching meds to help even out emotions also. seems like alot of people have these on hand as they go through their journey. especially when you have those setbacks. "I thought i was getting somewhere...nope startover"
and yeah i am eyeing that humira pretty hard right now. so many people who are benefiting. gonna see what the doc says about things

 

[David]

Hi Craig and welcome

Sorry to hear you're having so much trouble bud

You mentioned that you're researching meds to help even emotions out. I don't mention this too often but since you said that, you may want to look into and discuss Amitriptyline with your GI. It's a tricyclic antidepressant which, when taken in LOW doses, helps people with IBD with gut pain. We have a little Amitriptyline Club you can join or read as well.

I wish you all the best buddy. We're here for you anytime.

 

[RFarmer]

Sup, bro?

> pain meds etc. etc.

Maybe you should get a new doctor? I believe that if your current doctor isn't working out, chop him up with something sharp, and find a new one!

I'm not sure about the US, but in Canada, we can get T1's over the counter. They just take your name. They make you a little constipated, but any stronger will just make you more constipated. I think someone mentioned heat. This is a definite. Also, learn to eat. It really does help. Also, there's tons of alternative pain treatments out there. With a chronic disease, sometimes it's best to learn to control pain w/ alternative therapies. Acupuncture, meditation, yoga (David has a bread about this!), or tea. Tea helps me greatly.

Yeah... well... have a nice evening!

 

[trapstar4.4]

Hi Craig and welcome

Sorry to hear you're having so much trouble bud

You mentioned that you're researching meds to help even emotions out. I don't mention this too often but since you said that, you may want to look into and discuss Amitriptyline with your GI. It's a tricyclic antidepressant which, when taken in LOW doses, helps people with IBD with gut pain. We have a little Amitriptyline Club you can join or read as well.

I wish you all the best buddy. We're here for you anytime.

thanks for the info david. i will check out the club. One I saw your post as I was lying in bed about to pass out for the night, and told my gf about amitriptyline. it just so happens that she has a stash of it that she doesnt use. well I havent really been able to sleep through the night lately. I did some more reading on the drug, and decided to try one. and wouldnt ya know, i actually slept through the night for the first time in, I dont know how long. i think youre on to something here! going to give it a few more nightly runs and see what happens. thanks a ton

Sup, bro?

> pain meds etc. etc.

Maybe you should get a new doctor? I believe that if your current doctor isn't working out, chop him up with something sharp, and find a new one!

I'm not sure about the US, but in Canada, we can get T1's over the counter. They just take your name. They make you a little constipated, but any stronger will just make you more constipated. I think someone mentioned heat. This is a definite. Also, learn to eat. It really does help. Also, there's tons of alternative pain treatments out there. With a chronic disease, sometimes it's best to learn to control pain w/ alternative therapies. Acupuncture, meditation, yoga (David has a bread about this!), or tea. Tea helps me greatly.

Yeah... well... have a nice evening!

yeah Im going to voice my concerns to the doc and depending on his response, i may end up having to switch doctors. My gf will be there, and she already has a list of items that she wants to discuss. we will have to gauge it. hopefully it works out.

 

[David]

Whoa dude, careful. The dosing for for amitriptyline is very different for IBD than what is prescribed as an antidepressant (probably what your GF got). PLEASE PLEASE PLEASE do not self prescribe this. Talk to your doctor and get the proper dosage and monitoring. I totally understand your desire to use your GFs meds, but please do this right Antidepressants aren't a class of drug to be trifled with. For example, if you build this stuff up in your system then run out of your GFs meds and quit cold turkey, the results could be catastrophic.

 

[trapstar4.4]

Whoa dude, careful. The dosing for for amitriptyline is very different for IBD than what is prescribed as an antidepressant (probably what your GF got). PLEASE PLEASE PLEASE do not self prescribe this. Talk to your doctor and get the proper dosage and monitoring. I totally understand your desire to use your GFs meds, but please do this right Antidepressants aren't a class of drug to be trifled with. For example, if you build this stuff up in your system then run out of your GFs meds and quit cold turkey, the results could be catastrophic.

oh wow, okay that makes sense. I am a bit wreckless it seems.
she had it prescribed because of her interstitial cystitis pain, but it never worked for her so she had it shelved.

 

[trapstar4.4]

quick update for anybody who has opinions or what not.

i had another appt with my GI today. I explained to him how none of my meds are working, we change meds and absolutely nothing changes ever. looks like i am headed towards biologics, but first he wants me to get a catscan because he is slightly worried that there could be something else going on, and at the least he wants to see more. I really hope i come out of this catscan clear! . lets not compound my issues here! i can barely handle what i have now lol

any opinions on this? surely i will be all right, correct? I mean pretty much everybody here has had to cycle through medications as if they are water pills that are expected to make an impact. kinda concerned but not really, but then again... hmm:sign0085: lol

 

[JDTM]

Thanks for the update man! Here's my two cents: He's not looking for cancer or anything crazy like that -- more likely, he's looking to see if there is any narrowing or other types of complications that might be causing you some pain.

And an extra two cents: You're still young, and in the long run, I'm sure you'll be alright (and that's what I keep telling myself too!); this isn't a death sentence. (Actually, it's kind of more of a "life sentence," in a way, which may seem just as bad sometimes! But in reality, there's gonna come a point where you're gonna really be able to live your life again and not have to worry about this nonsense on a daily basis, so think of it that way.)

I'm glad you're updating just because it also gives me a chance to compare notes! I'm actually going in for an MRI tomorrow so the doctor can size up what's really going on in my small intestine, and I'm pretty sure that's what's going on with you. I'm still in the "let's throw this med at the wall and see if it sticks" phase, and after my last appointment the doctor said, "Well, there are a lot of other medications out there, but I'd like to look at your small intestine and see what we're dealing with before I prescribe anything new." It sucks to not get to try something else right away, but what he said made sense. DEFINITELY keep us updated on how that catscan goes!

 

[trapstar4.4]

Thanks for the update man! Here's my two cents: He's not looking for cancer or anything crazy like that -- more likely, he's looking to see if there is any narrowing or other types of complications that might be causing you some pain.

And an extra two cents: You're still young, and in the long run, I'm sure you'll be alright (and that's what I keep telling myself too!); this isn't a death sentence. (Actually, it's kind of more of a "life sentence," in a way, which may seem just as bad sometimes! But in reality, there's gonna come a point where you're gonna really be able to live your life again and not have to worry about this nonsense on a daily basis, so think of it that way.)

I'm glad you're updating just because it also gives me a chance to compare notes! I'm actually going in for an MRI tomorrow so the doctor can size up what's really going on in my small intestine, and I'm pretty sure that's what's going on with you. I'm still in the "let's throw this med at the wall and see if it sticks" phase, and after my last appointment the doctor said, "Well, there are a lot of other medications out there, but I'd like to look at your small intestine and see what we're dealing with before I prescribe anything new." It sucks to not get to try something else right away, but what he said made sense. DEFINITELY keep us updated on how that catscan goes!

wow, yeah you really are in the exact same phase as me. Good to hear that there are other reasons that he wants a catscan. I was really thinking, "this dude is going into look for tumors!!!!"

but yeah I will surely update. My CT is next wednesday, so i will surely update. Im very interested to see what is going on. hopefully it doesnt require surgery or anything like that. I do know that sometimes they need to go in and fix things.

Definitely hoping for that day when i can say at least for the most part, "I got this thing under control". oh it's gonna be nice

definitely let me know how yours goes, or if you have a thread, link me to it or what not. very interested in seeing the two paths

 

[JDTM]

Will do! I've got a sorta video blog thing going in the "Members Only" section, but once I hear back regarding the MRI and if there's anything notable, I'll probably put something up in my "My Story" thread and it'll get bumped back to the top.

On the one hand, I sometimes hope that my results won't show a damn thing (or nothing new, anyways), but on the other hand, if it leads to some sort of treatment that will work, then that's also fine with me!

 

[trapstar4.4]

so my doc called me about my CT scan today. i still have to call him back, but i have to do some research
he says that my condition is fairly active and it is time for step up management. he says that he prefers remicade. I have heard that remicade is crazy expensive and the treatment is very different.

i am thinking that i dont want to go the remicade route just yet. would rather try humira or immuran (he has mentioned immuran in the past). I have to figure this out before i call him but i dont think i want to go with remicade from what i have heard, unless I have to.

any opinions on this? I just dont know about remicade...


well at least he didnt call for surgery for anything. i feel that i escaped a bullet in that regard. going to research this forum for remicade and see what i can dig up

 

[JDTM]

Hopefully you've found some answers on the forum and elsewhere; I don't have any advice of offer on Remicade myself, but for what it's worth, it seems to work for many. I went to a CCFA symposium thing a little while back, and at the end of it there was a patient panel. One guy who had the disease for 5 years who seemed to be my age or maybe a bit younger was on Remicade, and he was really happy with it and it put him into remission. Also, I know David Garrard is on it. I've never liked the Dolphins, but I might have to root for Miami now that he's on the team. What is the world coming to... hahaha

 

[PlutoCronie]

Just wanted to say best wishes to everyone in their various stages of dealing with this highly annoying condition. The problem I'm facing is that I won't be able to continue on the Rx sulfur meds which work so well because of financial handicaps. I really do believe that I would be much happier not being dependent on the traditional medical system, so I continue my almost daily research, on what will or will not work. I've posted on another thread that the probiotics/Aloe Vera Juice regimen had worked very well for a while, when I took a break from the Rx, but then phenomenal exhaustion, as well as blood, forced me back on the Rx, which I now have only 2 months supply of. I am now experimenting with crushing my vitamins and drinking them in liquid to see if better absorption will stabilize my energy, as it seems to stay for only short spurts, even though the sulfur Rx are working very well.