Well....think it's time to share my story.

This could be long.....I'll try to give the shortest version I can.

I've been battling Crohn's since I was about 18, diagnosed at 25.  The diagnosis expanded to Cohn's Colitis with IBS.  I've been on just about every drug available to treat it.  I used Remicade for a year before a surprise pregnancy made me stop for 9 months (wasn't yet approved for pregnancy).  My Crohn's flared 4 weeks before my son's birth, and I had an infusion 2 weeks after he arrived.  6 days later, I had the most horrendous bout of serum sickness known to man (in my eyes anyway), which left me with a torn rotator cuff and labrum in my right shoulder and started my joint pains.  I have been on steroids (first Entocort, then prednisone) for 5 years now.  Of course, after all this time, the benefits are all but gone, my adrenals are dead, and I am suffering many ill-effects from the long-term use, including a large hump on my upper back, borderline osteoporosis, and of course, aches and pains everywhere, which prednisone should treat!  I'm 31.....I have four kids.  I was an active kid, played every sport I could, hiked, biked, camped, exercised....now, all of this is gone.  I struggle to at least go camping with my kids, and suffer the whole time.  I was diagnosed with fibro just before becoming pregnant 7 years ago, and never went back (and was off the meds) after my daughter was born because the Crohn's took over all my concern.  I've dealt with ever-increasing joint pain for 3 years now, so much so that it takes a good half-hour to rise every morning, then I get my kids off the school, get to the bus stop exhausted and have to rest, and when I return, I'm on the couch for hours, in pain.  I have been tested for RA, OA, had xrays of many joints, bone density scans, many blood tests for off-the-wall disorders, I've had parvo and ehrlichiosis.  I've tried antibiotics for the pain, I've been on Soma for a few years. I find myself using the Vicodin prescribed for my abdominal pain to also ease the pain everywhere else, which leaves me with not enough meds (as needed for abdominal pain would be BEAUTIFUL, if that were my only issue).  I have migraines.  I have TMJ. I had a hysterectomy for endometriosis and adenomiosis.  My repaired shoulder stil aches and screams, burns to the point of tears and screams. Every joint aches constantly....the swelling is visable.  I have neoropathy in my hands and feet, mostly on the right.  My back goes out at least once a mont with constant feelings of instability, burning, and pain.  Soma and Robaxan only help for so long, and just so much. I can't do dishes for more than 5 minutes on my feet.  I can't walk long distances without my feet becomingspongy, painful, and swollen.  My fingers and toes often feel like sausages ready to burst, burning and numb, tingling and swollen.   I don't sleep at night, even with Ambien, or pain meds, or muscle relaxers.....the pain is too wide-spread and I lay there jumping around and like I'm being shocked, which hurts even more.  My head hurts inside my right eye all the time, causing twitching under the eye.  Both sides of each kneecap often feel like they'll break through the skin.  My right hip often goes out from under me, causing pain and sometimes falls.  Every major joint aches every day, from mildly to unbearably. I use the meds I need for stomach pain to help me get through life.  I don't go through withdrawls, I don't crave them, I crave FEELING HUMAN!  I want to hike.  I want to play basketball and soccer and bowl with my kids.  I want to be able to open a can or stir a pot ot have the energy to pick up my living room in one day, without help.  I hate depending on my family to pick up the slack, it's not fair.  I have what feels lke electrical pulses going through my head, especially in my ears, short, fast zaps that I hear and feel, that drive me insane.  Typing this long post has required breaks in between.  I'm exhausted all the time, have to fight, mind over body, to get up and do things. It hurts too much.  Yet I can't sleep at night because of the pain.  I feel like I'm at a dead end.

Reading this board, I finally feel like I am not completely insane, or making it all up in my head.  I feel like I can share my story, because if I told all of this to someone who hadn't experienced it, they'd think I was making it up.  I hate going to the ER when I am at the end of my tolerance, when I can't take anymore pain, or going to my PCP (who doesn't prescribe pain meds, as he and my GI have agreed that she is the pain dr).....GI and I have discussed pain management, but she was afraid I would be masking serious Crohn's issues.  Now, I was just diagnosed with completely flattened villi from Celiac Disease, and THIS is making my stomach problems as bad as they are.  I begin a gluten-free (and egg-free) diet on Monday.  Now, what about the rest of my body?  I want to feel 31, not 71!  I get no high from pain meds.....I look for even an hour or two of relief, enough so I can function somewhat normally so I can be the mom I'm supposed to be, the mom I WANT to be.  I need no referral from my insurance company.....yet I am still tossing around the idea of doing this in my head.  I spoke at length with my husband this evening about it, and he is fully for it.  He sees my pain, my stuggles....he shaves my legs when I can't, he helps with my makeup or hair when I simply cannot lift my arm high enough to do it, or hold it up long enough without it going squishy.  He takes over for me when I can't play with the kids.  He sees my suffering, and he knows that I just want to be human.  He wants to be there to see the doctor, to help me explain, to tell him the things he sees me struggle with, the obvious physical manifestations, the fact that within 15 minutes of me getting out of bed, he can call how my day will be....he sees the pain in my face and body, he sees me unable to stand straight and not like an 80-year-old woman with sever osteoporosis, he hears the creaks and cracks, sees that I cannot crack joints or make them feel any better.  I want to stop hurting 24/7.  I want to sleep a full night without waking to excruciating pain.  I want to shoot hoops with my son.  I want to lift my 2-year-old up. I want to be able to do normal things that any person can do! 

Am I in the wrong place?  Am I nuts?  Or does all of this make sense to someone????  I need help, I cannot live like this any longer....I feel like an invalid who cannot enjoy the simple pleasures of life because I just hurt too much.  Is it time to make that phonecall?  Will I be looked upon as a drug seeker?  Will I be pushed out and told I'm fine?  I'm scared to death to make this move, but I can't continue this way.

Thank you all for the opportunity to vent, and for any insight or experiences you'd like to share!

 

Dear Metallichic,
Reading your post made me want to reach out and hug you. First, you are not nuts. You ARE in the right place, and yes, we do understand! We welcome you to our "family", although I'm sad you have to be here. You have so much, so much to deal with. I have to commend you for enduring, for struggling to get out of bed without hardly any sleep, and keeping the desire to be a mother for your children.

I am confused, though (and it very well could be me!) about the phone call and just what it is you want to do. I'm thinking it has something to do with seeking other pain management, but could you clarify?

I wish I had a magic answer for you, for all of us. You probably know in your heart that playing hoops may not be in the cards, but getting a night's sleep, and being able to play with your children in other ways - these are reasonable goals.

I look forward to hearing more from you. And I wish you peace in your heart.

PaLady

Thank you guys for making me feel like I am not alone! Your stories and support mean so much!

PaLady, I have spoken to my GI about seeing a pain management doctor, and she was concerned because at last visit, I didn't have the Celiac diagnosis, and we were under the impression that all of my pain was due to a Cohn's flare, and she was concerned I wouldn't be able to feel a potentially serious matter coming on that needed the ER. Now, I know what my major issue is, and I also know that my Crohn's looks better than it has in years. Yet, I still have all of these other pains. I take the narcotics my GI prescribes for me to help me through bad days when I cannot function, and then am left without what I need when I am having severe pain from my belly. Many friends, who are nurses, a researcher for a company who helps get new Crohn's drugs approved (had the Cimzia approval fact in my hand hours after it went through), doctors, and just people who know because of their experience that I need help with my other pains. Like I said, I'm nervous, I've seen sooooo many doctors over the years that have brushed me off, made me feel like I was faking it, looking for meds, etc., that I'm wary. I read a thread about pain clinic frauds....I don't want to go to the dr and have him think, ok, she looks ok, she's moving, why is she here? That day might not be a bad day....I also have amazing makeup that makes me look decent even on my worst day. I'm just afraid of being told AGAIN that nothing is wrong, when I know that there is.....I've had it happenwith so many issues, so many times, and eventually, I've been vindicated. I feel like maybe I'm wimping out? My dad tells me all tha time to suck it up, we all hurt.....well, we don't all have the same tolerance for pain, and we all don't have drugs and enviromental factors that effect our pain. This has been a long time coming, even discussing it with my husband, then to finally post on this forum....I've been posting on the Crohn's forum, but thought I wasn't sick enough for this one. That has changed. I don't know what pain management is all about, I don't know if meds or other treatments are the answer, but I know I've come to the point where I can't stand sitting on the sidelines anymore...I WANT TO LIVE MY LIFE!!!!! So tomorrow I will make the appointment....we shall see.

Dear Metallichic,
Thanks for explaining more for me. I only know general things about Crohn's, and not enough to know how all the pain meds interweve with that. Probably others can help more on that. But I certainly would encourage you to make that call, and to try to get the best pain management possible with all things being taken into account. My thought was in addition to a pain journal, would be to take your records from your other doctors with you, and perhaps any recommendations from them that you being assisted more with overall pain. That way the pain management doc will have the total picture in front of him/her. I'd also write down what has helped your pain, what makes it worse, etc. It's true if you go in and ask for a specific medication some docs look at you suspiciously, but if instead you tell them how what you've been using helps, and how you're able to do a few more things when you take it, that should give them the "hint" that's where to start.

You have some complicated problems, but I think for all of us there are trade offs. There's never a perfect balance, so we all need to weigh the side effects of various pain management strategies with the loss of quality of life that comes from being in pain. To me, I'd rather have some quality even if it put me at more risk (which it does for us all in some ways) of other health problems, then have no quaity and suffer. The stress from that is going to bring on health problems, too. If I'm "hearing" you right, that seems to be what you're saying. The key is to find the right doc who's a good match for you - and that's what we all struggle with. We keep trying though, and supporting eachother as we take each next step.

Making that call can't hurt. Keep posting here - you'll get wonderful support!

PaLady

I think there are two aspects here; the problems caused by diagnosed illnesses and conditions, and those that fall into the general "I feel like crap" area. The second category often is a direct result from the first and from the medication you take. Long term medication can cause a lot of problems such as joint pains, migraine, kidney failure, etc.

What I should do, what I myself did in fact, was getting me a doctor I trusted (he just retired - two trusted collegues took over), and let him (her) co-ordinate my entire health file. I had a Colonel from the Medical Service as GP but any trusted doctor will do, doesn't even has to be a GP. If you have an internist you trust, that's just as well for example. The basic issue is that you need someone with a medical background who sees the big picture. If such a person sends you to a specialist (talking generaly here), you'll be taken much more serious and your trusted doctor can provide valueble background information.

In my case, my general discomfort was greatly improved by rearranging my daily schedule (thanks PALady), paying attention to little things (placing everything near you for example so you don't have to get up all the time) and by reducing and changing my medication. I couldn't sleep either due to the pain which consequently left me exhausted every day which in turn caused spasms and epileptic seizures which caused additional intestinal bleedings which caused lack of sleep (obviously) etc. Now I take sleeping pills which give me the necessary rest, this reduced my spasms and seizures and seriously limited my intestinal bleedings. I was able to quit my muscle relactants, changed the medication for my epilepsy and I'm now generally reducing most of my pain medication (started 2 1/2 years ago, still at least 1 1/2 year to go). I do take a lot of Opium to prevent me from bleeding to death and to replace my other painkillers.

I think there is potential to do something similar in your case. You'll have to realize though that you'll never be completely cured and that's something you'll have to learn to live with, we all do. It gets easier over the years, trust me on this one. In my case, I've learned to accept the pain and pain no longer is the enemy, it has become a trusted companion, always present. I need painkillers to physically be able to function but I'm voluntarily lowering them as much as is medically acceptable (I need a certain amount or I'm paralyzed by the pain).

Once you went to a pain specialist, things will improve (slowly but steadily). Don't be afraid to be labelled a junkie, your friends and family know better and that's all that really matters.

Hi Metal and welcome to the CP forum. You just about wrote my past six years verbatim kid. No, No, you are not nuts. Have I got some news for you kid, sit down with a cool drink and we will visit. I have cd, uc  & now lupus and plenty of the extra manifestations resulting from these 2 diseases that you just described. I could cry for you because I have been there and done that.

First off, you may not like this, but you need a new GI dr. You & I both know with these diseases its not unusual to have to keep seeking a GI thats truly understands cd and what goes with it. With all the new meds available today, too many of the older GI's want to continue with the old line of meds, evil Prednisone. Short term is fine, but when you become Prednisone dependant because of long term use its destroys your bones and many other things as you already know. Has your feet and hands ever tingled while on Flagyl, is that when the tingling began. If so, you may permanent nerve damage from the Flagyl, thats the bad side of Flagyl.

I must ask, before getting pg, you said you were on Remicade. Did it help you? Were you given pre-meds prior to your infusions to ward off any potential reaction? If Remi was helping, did your GI & OB not know you could continue Remicade and it would not harm the baby? There are several Moms on the cd forum that had Remi babies with no problems. Also, were you on Imuran or 6MP while on Remicade? Their OB talked to their GI's and everyone stayed on track.

Has your GI ever talked to you about crohns arthritis? Yes, it exists. Has your GI ever spoke to you about different manifestations that can occur with crohns? Have you had an MRI of your back? How did you tear your rotator cuff? Have you had any prior problems with any of your joints before things became severe? What are your current labs looking like? What meds for the cd are you on now? I know alots of ???????

I do not know where you live or anything. One thing I will tell you, my GI does not like to give much pain medication to his patients, especially for long term use.  What he does offer is vicoden which I cannot tolerate. Most GI's do not give much for pain and its for short term use. My GI knew the pain I was in and he ref me to a pain mgt specialist for help. He was not worried about masking my cd symptoms one bit. Many crohns patients see pain mgt drs due to the manifestations of crohns, so your GI is full of it.

If you do not want to change GI's, then find out who the best pain mgt dr is in your town. Ask if you need a referral from your PCP to see the dr, alot of them require this regardless of your insurance. Be sure to call and find out if the pain dr is accepting new patients and be sure to ask if the dr prescribes pain medication and not just do injections. You have to be careful because some pain drs only do injections, which is not going to help a cd patient. Do not be hesitant or be embarrassed asking these 2 questions when calling, because there is in reality 2 different type of pain drs. If the person you speak with says the dr does both then you are ok, you just don't want one that does the shots only. Once you have located a dr that will see you, if you need to be referred there, then call your PCP and get them to make the referral.

Now, the next step is start a pain journal, starting tomorrow when you wake up. In this journal you need to state what kind of pain you are having, (burning, tingling, numbness, stabbing,) you get the idea, be specific where this pain is at, what makes it worse, what gives a little relief. Keep track of your pain levels daily on a score from 1-10 with 10 being the worst. Take this journal with you to the pain dr. appt. Give this to the pain dr to read. Keep it short to and to the point. This helps the dr understand your pain and lets him know you are serious. 

Another thing is, if you are not on an anti-depressant, the pain dr may very well prescribe one. Studies and research have shown that in many cases anti-depressants can help with chronic pain and many pain drs use it as another tool. In my case I am depressed due to my condition, so it helps me with both. From my own personal standpoint, I sought the help of a phychologist at my PCP's recommendation, to help me learn how to deal with all the upheaval crohns created in my life. My physch was knowledgable of in autoimmune diseases. I have only been dx'd 6 yrs after an emergency resection of the small bowel. My cd has not ever been in remission, I am currently back on Remicade for a fistula. GI says mostly likely I have had cd for a good 20yrs.

Now, either look here at HW or go the CCFA site and get info on the extra-manifestations that crohns can cause and print off a copy for your GI and your new pain mgt dr. Your GI needs to take you serious on this stuff anf if she is not willing to, then you need to find a GI thats knows all about cd. Not all GI's deal with cd. CCFA has a lists of GI to pick from.

Ok, I have given you some food for the thought. By the way, due to not being able to tolerate most pain medications, in June of 05, I had an intrathecal pain pump implanted. Yes, my drs knew my pain was serious. Good luck, Susie 

Hi!!! Im so sorry that you are going through so much right now!! I know how overwhelming it can all be!

I have UC and severe arthritis in most of my large joints (and some of the small joints to). Im a stay at home mom to two children (ages 4 and 1 ) and like u i find it very hard to keep up. Thankfully, like u, my husband is very supportive and caring and helps to pick up the slack when im in pain.

I think that your GI is copping out. If he will not prescribe pain meds, then he should send u to a pain management group.

My pm (pain management group) is good about treating all my pain. I do get procedures (for the foot) but also use percocet daily, along w/ lidocane patches.

I think the others have given you some really great advice....good luck and hope to talk to u soon! (ps, love the name, LOL)

Thank you guys all so much for the advice and prayers. It means so much.

We just got back from camping (never, EVER fun when you can hardly move), so tomorrow morning I will start a pain journal. I could about fill one today.

I did find that in looking for apain management doctor that many don't prescribe meds, they do PT and EMGS and such.....ok, that's great, but when it's every joint, what can you do? So I eventually found one that's a bit of a ride, but he does the whole shoot and shebang. The best part is that after having an MRI for the headaches and twitching which came back normal, I was told to go to a neurologist, and he is one also. Killing two birds with one stone is a beautiful thing! So I see him on Thursday.

My GI is the one who writes the pain meds scripts. My PSP refuses to because he knows that my GI does. Over the last 6 years, my GI has become a friend......and she also has a daughter, son and husband with Celiac, and a sister-in-law with Crohn's. I also see 2 other doctors in the practice, one that I just started seeing (who was the one who saw the Celiac with the capsule endoscopy), and I also see the director of the GI department at Albany Meical Center. It's not for lack of doctors, for sure! It's nice when they can put their heads together and try to come up with something, though. My GI just worries that if something happens, lke a stricture or obstruction, if I'm taking something heavy-duty, I won't know until it's too late. I had an endometrial ablation a few years ago, and was pretty drugged, and didn't realize until it was at the point where I couldn't move, was vomitting and had a high fever, that it had caused an abcess in my colon that was ready to burst......2 weeks in the hospital sucked!

Morgoth, they have all mentioned the fact that these drugs have caused a lot of the pain issues I have now, and I have no doubt. WHen I had to stop Remicade, it was not yet approved for pregnancy, and I didn't want to risk my baby's health. I'm so glad it is now.....I wouldn't wish what happened to me on anyone. My pre-meds then were benadryl, tylenol and zyrtec, no crazy steroids. I know for a fact that the steroids have made a mess of me, as well as all the other nasty things.

Caninesupport, I'm sorry you have this pain too! But it is good to know that my shoulder is not permanantly messed up. I guess it's just tough when you use it constantly!

Straydog, as far as other drugs, I'm allergic to 6MP, Immuran, and my GI is too afraid to screw me up anymore with methotrexate. It's hard to say if Flagyl started my tingling and numbness, because I've been on it for so long and so many times, along with Xifaxan, that I could differenciate. I've tried everything...and I'm sure that hasn't been good! I'm so sorry that you have to go through these same things. The Albany doctor has brought up Remicade-induced arthritis or lupus. I've been tested for so many muscle and joint disorders....no answers. It kills me. My Crohn's, thankfully, IS now in remission. I've also been on many anti-depressants, right now 60mg of Cymbalta, not only for pain, but because, darn it, hurting like this gets you pretty down! My GI told mw at our first visit that ifI weren't already on one, I was going to be on one from then on. I don't know if it helps, but I'm not going off of it to see! :P

Shannon, wouldn't it be nice if we could have just a smidgen of their energy???? LOL I want to be able to enjoy things with them so much.....I hate feeling like a prisoner. I had to nap a few times this weekend while everyone else was enjoying our friends at camp and having fun because I just hurt too much. It's so depressing.

Daggar, I'm really hoping that's the case! Tomorrow is the day.....

Lindaloo, THANK YOU|!!!!!!

Anyone I missed, thank you again. Time to get off this, my back is screaming. You guys are amazing, I'm so glad I found a place where I know I am not alone!!!!