I’ve had Crohn’s for only a short time, in comparison to many.. I started the painful symptoms in January 2007. The first several months, I didn’t have pain medication to cope. In hindsight, I wonder how I did manage, because the pain is just so terrible.
Today, I came across a post that referred the pain of crohn’s to being close to labor.. not that it’s so much similar in the pain, but the intenseness of it. For me, I find this to be true. One of the more intense labor pains I would have would be intense pain in my upper thigh.. no, not really my thigh, more like the bend of my legs, but radiating down into my upper thigh. So the pain would go from abdomen to upper thigh… intense, mind consuming pain.
Only recently have I started feeling that upper-thigh pain in relation to my crohn’s.. I thought it odd, but immediately likened it to labor pains.
So, how to manage this pain? No easy answers for any of us.
First, if the pain is very bad, you need to consider if going to the ER is the best option. Most ER’s are going to be very willing to give you pain medication.. keep asking.. and if they aren’t helping, ask again. It’s your body, your pain, be pushy about it.. My doctor tells me, “It is absolutely unreasonable for you to be in so much pain.” The ER will probably take some xrays and do a CT scan – both of which are quick and simple, painless.. and will clue you in to what is going on, why you are having so much pain and what the next step may be to do.
But if you’re dealing with normal, day to day pain of crohn’s, I find relief in a warm bath. I like to have some bubbles too.. the girly in me, I guess. But a nice warm bath seems to reach deep inside my body and soothe the aches and pains I’m dealing with. I take a book, a glass of tea or other and plan to soak for as long as necessary, adding some hot water as needed.
When I am having upper abdomen issues, which have been known to cause me to puke with little warning (not a good thing when you’re working with customers!).. I do a lot of slow, calming deep breaths.. in and out.. very calm.. this again, was something I picked up for labor pains.. it helped with that.. and it’s been very helpful with crohn’s.
Watch what you eat, when you eat, etc you may also find foods that irritate and make you feel much more crummy… take note and avoid!
Being able to lie down.. or more accurately, lie still seems to calm the body. Stress is an enemy and when I am very stressed, I find I’m likely to be in more pain. So being able to lie down, quietly and relax.. it’s almost as good as a bath.. especially if you use a warm compress, like a heating pad or a microwave heatable rice pack.
When I am having really intense pain, I don’t particularly like to be touched, and Crohn’s is no different.. but when I’m just sore and achy and generally not feeling well, I do like to have a massage – not a deep, down muscle rub, but a gentle, loving touch, that glides over my skin or clothing. Just something gentle and soothing.. deep down rubs tend to make me feel more sore in the long run (unless I’m feeling well and then, well, go baby, go!).
With Crohn’s, depression can be a side effect. Being depressed and in pain is no way to live life.. at least, from my view point. I have 4 kids, 4 dogs, a wonderful husband.. a good life.. I don’t want to live it in tears and pain.. not if I can do anything to keep from it. I take anti-depressant to help.. and my doctor said the particular one I take also has been shown to reduce some pain. Now, having been on this almost a year, I’m going to say I don’t see anything in the way or reducing pain… but I am not in tears all the time, I am not holing myself away, avoiding people, etc.. and that, in and of itself is a good enough form of pain relief for me.. it’s pain relief for the soul.
Maybe I’m lucky, but my doctor is very good about prescribing me pain medication. I was taking vicodin, but we’ve since had to up that to percocet and norco (norco is the equivelant of 2 vicodin, double the hydrocodone without as much acetaminophen). My concern was, like many, addiction.. my doctor and I have discussed this at length, many times (to the point he laugh about it) because I worry so much about it.. in the end, I take it, and I war with myself on how much I take, how much pain I am in, etc.
I know there are other ways of coping with crohns pain.. these are just some of mine..
{ 77 comments… read them below or add one }
Next Comments →
Great post. I go through a lot of the same battle with myself about pain meds. I don\\\’t like to take them but I sometimes feel its worth the risks to get some relief. For some reason I can make it through the day with no problem and its in the evening when I try to relax that I start to notice the pain.
Have you ever tried the OTC pain patches called Salonpas? They are in the drug store next to the icy hot patches and I swear they work although I have no idea why!
Mariannes last blog post..Are lefty’s more likely to get IBD? could not add cached callYou have an error in your SQL syntax; check the manual that corresponds to your MySQL server version for the right syntax to use near ‘s more likely to get IBD?’,’69.89.18.39′)’ at line 1
I understand the concern for addiction…when I left the hosp. from my last surgery (full hysto) they prescribed 10 pain pills..what the ?>@!! I called for more and they said they were worried for me..kidding right? I did get more with reluctance from them…SURGERY…female organs out–mean anything?! I learned that having something to help ease the pain also helped in the healing process…now it’s just Advil (used all along-only thing that helps!)
IBS is what they keep telling me and so I cope everyday with pain…My doc did prescribe Dyciclomine (sp?)…that does help with the pain…and that makes for a better day!!!!
Melanies last blog post..TRACE
Oh I wish I could take Advil. Crohn’s and other IBD sufferers are not supposed to take ibuprofen or aspirin or any NSAID. That is one of the worst parts of the diagnosis for me.
Mariannes last blog post.."Crohnology" of Advances in the treatment of Crohn’s Disease
I fully understand your suffering, I was diagnosed with crohn’s last year around this time. I am a second year music student at capital university, and having crohns was one of the hardest things to deal with last year. In fact I had to drop out second semester to have a resection. This tore me up on the inside,(mentaly and physically lol) because I had left home to persue my life long dream, and now there was something that was tottaly beyond my controll holding me back. The stress from the conservitory, and from my illness almost drove me insane, not to mention the deploreable conditions of the restrooms and showeres, but I made it back this year and am doing preety well.
Any ways to get to the point I was trying to make, I had a perferated ear drum over the summer and was prescribed vicodin, and when ever I took it I noticed that my cramps would go away, and my bowels would slow down. For me this was a god send, expeasly in such a stressfull enviornment, because the vicodin relaxed me, and made me feel alot better aobut things. So say what you will about addiction and taking the drug for reasons other than pain, I say if it makes you feel that much better, and Its not awful for your health, then you should do whatever you can to improve your condition.
I might add I’m not taking the drug to get high, seeing as how what I was prescribed is basicly one step above tylanol (5-500), I just take it like i would a pain killer, because like I’ve herd from so many other people with crohn’s, tylanol just does not cut it.
God bless and take care.
This is a great post!
I am trying to conceive with my husband and it’s not suggested that I take T3s or any other meds that would actually take my Crohn’s pain away, lol. But baths really do help, and so does some gentle stretching like yoga. Sometimes when I’m really ‘feeling it’ it seems counter-intuitive to do any exercise, but after a half hour of gentle poses, it’s a world of difference.
Also, hot water, herbal (mint or chamomile) tea, or even hot water with lemon seem to help warm me up and relax my abdomen.
Good luck and my best to you.
Great site…..as I didn’t realize that us people with Crohn’s had to suffer through a lot of pain. I experience boughts of pain about once a week or every 10-14 days. It will anywhere after 5 p.m. I am newly diagnosed person with crohn’s whohas probably had it for 35 years……so the only thing thus far that works for me is a heating pad and I drink lots of warm water…and I mean lots. I am on the low residue diet and it is trial and error. My last pain attach was due to eat Jambalya….my girlfriend chopped the veggies big enough so I could pick them out….I totally forgot about the sausage…..Since 4 a.m. I have been in a lot of pain. This is hardly fair. I am currenly on Salaflak, Entocort and will start Imuran in a few weeks. Thanks for all the suggetions.
@Erica: sorry to hear you too are suffering so much pain. So far, I’m not able to completely pinpoint the food sources that cause issues for me. Maybe I don’t try hard enough. I don’t eat a lot anyway. and when I do, I get really grumpy.. I’m going to eat what sounds good – wah! Probably just making life harder on myself.
I was just put on Cymbalta and Seroquel for night time. Already taking Entocort and Colestdid. my PCP said in 2 weeks if the pain is not better he will write me for some pain meds. what do I ask for, in the past the vicodin ES was barely sufficent and that was every 4 hours. Now this is a new PCP so I dont want to be too pushy. Any ideas???
This is such a good site. I have been searching for a while if Crohns pain does go away…..stupid question hey! It’s also refreshing to hear people with Crohns just getting on with life, so many sites I have read seem to just belong to people whinging about their illness rather than attempting to make the most of their lives and living with it. Thank you
What do you suggest for when a) the pain hits while you’re out of the house, or b) one has unrelated pain, such as a headache or, in my case, your knee begins acting up (I have a knee injury that sometimes gives me problems)? I was just diagnosed with Chron’s, although I’ve had it for at least a year (the doctors kept insisting nothing was wrong). Over the last few years I have taken a LOT of Advil, since I wasn’t aware that I had Chron’s. I’m about to start my second year of college, and find myself with headaches either from studying for hours or even from the weather. I’ve tried both Tylenol and Asprin, but neither has any affect.
Hi, sorry to hear you have to deal with this horrific disease, my wife was diagnosed at an army medical center in 99 for crohn’s, and she has had flare ups and gone into remission and right back at it again, she had ulnar nerve surgery in the beginning of 07 and was on percoset 5/325′s for about 4 months and then her dr wouldnt prescribe anymore, but in the meantime it helped a great deal with the crohns. I was able to obtain 15mg percocet which she would break in half and take about every4-6 hours, but very expensive and now the supply has run out and we can’t get anymore. Unfortunately we cannot obtain the medical records and the experience was so horrific that she would rather die than go through all the diagnostics again, she also has emetaphobia, the fear of vomiting, and it doesn’t matter how much clonazapam she takes she would still rather kill herself than vomit. so the bottom line is opiate treatment has been the best solution, so friday at 3 am i took her to the ER for withdrawl symptoms and of course the nurse as he was administering her withdrawl drugs made the comment about her addiction and i went off on him about the difference between withdrawl and dependence which he was very appolagetic.
so I guess where do you go from here, dr wouldn’t give referral for GI specialist or for a pain clinic, bottom line is she needs the opiates and can’t have the ibuprofen or acetiminophine, any suggestions would be greatly appreciated.
I was just recently diagnosed with Crohn’s in April. Had apendix removed and three ft. of inestine, and half of colon. I had numb thighs and just the last few days, feels like I’m getting stabbed in my right leg, and numbness in thigh. Wondering if any one knows about this. Thinking of going to ER but I hate that place and all the crap they put me through.
ok, 1st i would like to commend all of you for getting your stories out there. this disease IS painful, embarrassing and hard to deal with by yourself. looking on the internet for outlets to release my feelings always seems to help me. now for the use of pain meds, my old family dr. told me not to use any sort of pain meds. he said they constrict the intestines causing the stool to work harder to move through and causes more pain. so i don’t use anything. i do like naps and heating pads. i’ll have to try the bath, that does sound nice. now i have heard that foods react differently for different people. but, for me, dairy, deep-fried and refined, bleached, or enriched breads or noodles or rice make me sick. i mean, the horrible-labor-like-pain we are all talking about. protein and veggies, that’s what i try to eat most. but that is not much fun either. i make it fun with chicken taco night, making my own with soy cheese and lots of chicken, rice and beans. on those nights i get to eat what everyone else is eating. i don’t feel so much like an outsider. isn’t that what we are all searching for?
I have been to the ER.atleast 4times last month for crohn’s.I know now im truly not alone.
i was told i have crohns about 5 months ago, after numerous doctors and several tests involving hoses and cameras lol. im on aza thioprine and lialda and 20mg of prednisone, but nothing seems to work i also take oxycodine for pain it helps alot but the doctors act like i shouldnt be on them for very long but i dont know what else to do. I go in two days to my gastro doc, he is supposed to start me on some kind of bi weekly injections. Has anyone had any luck with these? I hate to be pushy with the doctors but like i said the oxycodine is the only thing that helps with the pain last time i got them filled my doctor said i would have to start going to a pain management doctor. I just hope he understands and dont act like im some junky trying to get a buzz.
@Matt: My (family) doctor was awesome about pain med. He told me right away when he suspected crohn’s that I could deal with pain for the rest of my life. Maybe not all the time, but off and on. He told me not to be concerned about addiction as long as I was truly taking it for pain, and taking only the prescribed amount. He’d work with me to get off the pain med if I needed help. He also told me if what I am taking now stops working, to let him know and we’d find something else.
I have been on azathiaprine (imuran), but didn’t notice much difference whether I took it or now.. I am currently on humira – that’s probably the bi-weekly injection your doctor is talking about. It’s easy to do and yes, it has helped me tremendously. I haven’t had a flare since I started taking it. Though, I do still get pain. I told the doctor (GI) last visit I still get pain, but I just figure that’s the pain I’ll deal with forever now.. it’s nothing like a flare up..
I don’t know what a pain management doctor would do.. do they offer different techniques for dealing with pain or just different medications?
I know people use to suggest to me to meditate, or do yoga.. Those people (imo) don’t have crohn’s.. But then, maybe mine just isn’t text book and theirs is.. who knows. We all deal with pain differently and as long as you are going by the prescription, I don’t see why your doctor couldn’t keep prescribing it.. maybe he’s afraid not only of addiction, but of others taking your meds for their addictions?
@LARRY: No Larry.. you are absolutely not alone.
@Kera: Your doctor is right, at least sort of, about the pain meds. They tend to slow down your digestive system.. so if you deal with diarrhea, that may not be such a bad thing.. if you deal with constipation, you may need to find a different type of pain reliever (rather than an oxycodone). For me, it just makes things slower.. I don’t get diarrhea, but I don’t get constipated either.. just things move slower.
I won’t go without my pain meds.. Life is too short, especially when you have little kids. Why should I spend my life in pain, not being able to enjoy my kids, go on hikes or even little things like playing games. I’d rather take pain meds and enjoy life.
As for food.. that’s been a tough one. My sister was just diagnosed with colitis.. she’s still learning what she can and can’t eat. We talked about how hard it is.. not knowing. There isn’t a list, like with diabetes.. it’s just trial and error. And it sucks knowing you are going out, not knowing if this or that will be ok or not.
@Jordan: I don’t know where you are from.. But I’d probably be leery of going to the ER too, in your shoes. Why did they remove so much of your intestines? Everything I read says to avoid surgery for as long as possible. Did you have complications? Regardless, I feel for you.
Not sure about the stabbing pain or numbness in your leg and thigh.. maybe it could be sciatic nerve pain from the surgery? I hope in the months since you commented you found a good solution and are feeling better.
@Ed: Hey Ed.. wow.. bad situation your wife is in. First, she *can* take acetaminophen for pain – that’s what the “325″ is in the percs or vics. When you started getting 15′s, that would be 15/325.. so the amount of oxycodone was increased while the acetaminophen stayed the same (so as not to overtax the liver). So if nothing else, know she can take that… though I know from experience that doesn’t help nearly enough.
My main suggestion would be to find a new doctor and have them dig for her old records, they might have more luck in getting ahold of them. She could also get a referral for a GI doc from them. If you don’t have a regular doctor it makes things harder because you haven’t developed a relationship with them to know you personally. Making doctors gun-shy on prescribing some things.
Good luck..
@Nicki: actually, headaches *can* be related to crohn’s disease. Crohn’s Disease, unlike colitis which only affects the colon, can cause inflammation and other issues from your mouth all the way through the digestive tract as well as joint pain and swelling, eye and vision problems and yep, headaches.. it can even cause rashes outside the body.
I would head to your doctor and let them know all the things you are coping with.. if possible, write a list, like a journal, documenting pain and headaches. I’d start with your family doctor if you have one.. if not, get one. With crohn’s disease, it’s for life, you’ll need a good family doctor in your corner to help you cope with crohn’s.
Im in the process of being diagnosed with crohns and have fitulas and leg and abdominal pain. I take 1 perk every 8 hrs because I work ft and it just helps take the edge off.. does any one have any other ideas or thoughts on how to reduce the pain in the buttocks area?
The only advice I have is that no one should be made to suffer as much as we do and try to get a referral for a pain management clinic or Dr. I have had crohns for over 28 years and have had 8 surgeries , I have experienced some very severe encounters with pain and I understand all of you that are having trouble with the thoughts of addiction and practitioners that use the excuse that you will become an addict instead of easing your pain. Be persistent take charge of the situation you have every right to be pain free and to live life. I have had the same pain specialist for over 5 years and yes I take narcotics for pain. I have developed a tolerance and dependence for narcotics there is a difference between addiction and dependence. Do not suffer , get help and yes be careful with narcotics get a specialist educate yourself. We have a disease that can be brutal at times , Morpheus is not the enemy the disease is, good luck to all of you.
Hello
I have crohns for 25 years. I’m currently going to a pain care center for my crohns i’m on 15mg of oxycodone IR x6 = 90 mg every 6 hours for crohns. It takes alot of pain meds to get rid of the pain. Dr’s under treat crohns patients I have had 2 surgries. I have been on this dose for 6 years without going any higher. I have been going to the clinc for 1.5 years. They think I’m on a high dose and plan on bring me down as they think some of my pain maybe Hyperanglisia. I have cut down before and the pain only got worst not better. I do not have that. I do not want to act like I’m being stubborn as to not want them to treat me but I do not have that problem. I also have short bowel so can not go on Oxycotontin. The patch does not work. I’m on 600 hundred pills a month. They think it’s high. I agree but it works and I never ask for more and really do not want to change but how can I get this through to them without seeming like I do not want to work with them. I have been of pain meds no problem twice after I had surgery before. I’m not addicted and have not abuse my pain meds. I just need high doses for it to work. Let’s face it and let’s be honest 5mg of oxycodone will not even touch your pain. I think they should start at 15mg and work from there. We suffer needlessly. I do not suffer as I’m on a high doses 90mg of oxycodone. I work,I excercise and live life to the fullest because of pain meds. The doctors are always trying to get me to lower my amounts or get off. We must always be honest and never lie. We must stand together to make sure they keep giving us the proper dose of pain meds as crohns is hell
RiverHawk
Hi. I am 28 and have had Crohn’s for 12 years now and i don’t really find that opioids help my Crohn’s pain, though they do slow down the diarrhea which might be the reason it can indirectly help the pain. I do take Vicodin occasionally for my back ( sciatica, i was a CNA for 7 years before I became a nurse last year) and it does work for that, but for visceral pain like from Crohn’s, it doesn’t though i wish it did. I guess for now I just have to wait to see the Doc on Thursday and start another lovely course of Pred. Hopefully I will not kill anyone.
@ Gregg – this comment totally slipped by me.. apologies.
Would like to know what happened (a year ago) and how you are doing now.
My sister is in a similar situation as you were last year – needing pain med, not necessarily wanting it, but definitely in need of it… without a regular family doctor, it’s hard to get pain medication regularly.
Unfortunately, it’s hard for some people to get past the issues they deal with in regards to their crohn’s disease. It’s also hard for others to know just what they are going through since crohn’s disease is an internal disease, people who don’t have can’t really understand it, and even those to who do have it, may not experience the same symptoms and issues as others they may know.
Crohn’s Disease is definitely not a textbook disease. While one may experience one set of symptoms and not be able to eat those foods, someone else is quite different. Makes for a very frustrating illness. Even the doctors can’t say for sure.
Thanks for this post. I have likened the crohn’s pain to labor pains myself. I get the same upper thigh numbness when the pain is really bad. I’m trying to figure out how to deal with the pain – it just never seems to go away for very long. RIght now I’m using Levbid and Percoset.
I was just diagnosed in September and am currently on 120mg prednisone (tapering down from 180mg after two weeks of IV solumedrol(sp) ) and 4,000mg Asacol a day. As with most of you, pain is a constant in my life now. In the past seven months I have had four flare-ups. I have found that percocet doesn’t work for the pain but tramadol (ultram) does, well it takes the edge off at least. Like many of you I am very reluctant to ask for anything stronger but there are times where I can barely function due to the pain. Seeing that I am active duty military this tends to get in the way of a lot of things. My GI says the next step is trying Humira. For those who have taken this drug, has it helped? Thanks for your input.
I am a 34 years old and just recently got diagnosed with crohn’s…. For the past 7 years i was dealing with flareups on almost a monthly basis and found that the only thing that would get me through them was opiate pain killers. (and i tried almost everything on the market) After my diagnosis this year in december, i sufferd an acute case of pancreatitus caused by a massive flare which put pressure on my pancreus. This landed me in the hospital for a week. Since then i have started REMICADE as well as entocort. I still suffer from the milder flares often….and still need the pain killers to get me through. I have been very open with friends and family and doctors about this… and all say the same thing, “rob you really need to stop taking the pain killers” almost as if they are looking down on me. I have been very depressed about that as well as the disease itself. But my response to them is simply , You really have no idea what this is like. Quite frankly it is brutal, almost feels like get cramped up to the point of deleirium. If i have no pain medication i will ultimately find myself almost brought to tears with the pain in my upper abdomen. I don’t want to stay on pain killers but i surely would rather be dependent on them, Then agonize for anywhere from 4days to 2weeks at a clip till the flare subsides. I have found that not eating solid food during these periods help allot!!! I will usually just get soup or ENSURE and ingest that until the flare has subsided. I was happy to read this because i don’t feel all alone. And i don’t care if people or doctors don’t want to hear that i need the pain killers to bridge the spells….
Anyone who has never had this condition is no judge of just how painful, stressful, and life altering it can be.
I realize I am very lucky to have such an understanding family doctor. He has been my doctor since 1992- and knows I’m not a pill taker by any means. The most I ever would do was birth control and allergy meds – neither were very regular. I even had one of our babies at home, unassisted. He knows that I will only take pain meds if I am in pain.. not to abuse it.
All that said, I also realize many, many people are not so lucky. My sister went through a horrid flare this past winter – and none of the doctors she saw would do anything for pain. I wanted so bad to send her some of mine, just to know she had some relief. I didn’t. She made it through and is doing well. She has UC.
Rob, I know it sucks having friends and family be concerned about your use of pain killers. Heck, people who post comments here, show concern about my use of pain killers – and I just want to say, thanks for the advice and concern, but my doctor and I have it under control. It’s just like you said… unless you have this disease AND are one of the ones who happen to experience extreme pain in association with it, you just have no idea the pain of this disease. I don’t have any suggestions on how to explain to them – though I did read on a CD email list some people suggest sitting down with friends/family and showing them videos on YouTube from people who talk about the disease… and that seemed to be helpful. Also, maybe liken your symptoms to something they may be able to grasp.. like having the flu.. then imagine feeling that way 3 or 4 or 5 days a week, sometimes every day for weeks at a time. Maybe by explaining in ways they can associate with will help.
Regardless, you are always welcome to come here and chat – or contact me via email (my contact page) and we can talk that way.. I’ve been lax about posting here.. but maybe I’ll set up a forum for people to visit more regularly.
Finding a good way to deal with pain has always been hard for me, in regards to crohn’s disease. I haven’t had levbid, but have used percoset – I don’t care for percoset much.. so now I take norco.
That upper thigh pain during labor was always my downfall. I could deal with the rest of it, but that thigh pain was killer. My pain from crohn’s disease isn’t like that, but definitely a miserable pain and not one I want to live with daily..
One thing I do if it’s really bad is take pain med and then get into a really warm/hot bath.. after soaking for a while (with a good book) by the time I get out, the norcos have kicked in and I usually feel better. Though some days that just doesn’t work either. And some days soaking in a hot bath is more luxury time than what you have available. Try some heated rice packs, or similar while pain meds start working.
John, Hi.. sorry for your recent diagnosis and issues relating to crohn’s disease. 120mg a day of prednisone seems like a crazy huge amount! How are things going? Have you been tapered down? I think the highest I got 40.. maybe 60 for a very short time.. and I knew I hated that medication, even if it did help the flare chill… so I can just imagine how you must feel with 120/day. I wasn’t taking so much asacol, as I’ve since learned, as my sister and my cousin are both on about 3-4 times what I was taking a day.
As for pain meds.. I’m with you, percocet wasn’t really very helpful for me, but norco works – I haven’t tried tramadol. Though my doc says if what I am taking now quits working to let him know as there are many different options for pain medication / management. I still stand by what I’ve said about pain medication – if you are in pain, you can’t be living life fully.. if you hurt, talk to your doctor.. no one should be in pain, or be afraid to ask for help for the pain. Though I know that doesn’t always work.. sadly.
I am on humira and it’s been working for me. The remicade helped with the crohn’s disease, but I was getting joint aches in about every joint.. that ended up being an allergic reaction – so we switched me to the humira and it’s done wonders. Though I do still have some pain, regularly, it’s nothing like it was. I still have joint aches left over from the remicade too.. but it’s all much better than it had been.
Would love to hear how you’re doing now, if anything has changed.. and how you cope being active duty military.
Hi Amanda – I know it’s been a while since you’ve left a couple comments, but I did want to reply to them.. I was pretty down and out through the winter months and only the couple months have I started to feel normal again.
I am sorry to hear opioids don’t help for your crohn’s disease. I couldn’t manage without the pain medications I take.
This part of your comment confuses me:
Do you mean, they don’t work for you? Or that they don’t work for visceral pain in general? I know it works for me, and I couldn’t manage without – of that, I’ve no doubt. I don’t take more than my doctor prescribes, and often not even that much.. When I am hurting, I can lie on the couch/bed and actually feel the pain go away when the med kicks in. And there are times I literally want to cry with relief. I wish everyone could have something to take the pain away.
Hope you are feeling better after your most recent course of prednisone.
Hi I have been diagnosed with crohn’s for a year and a half. I have only had four months without a flare up in that time. I am very grateful that so far I haven’t needed surgery or anything major, I am just having such a hard time with the pain, weakness, achiness, diarhea and joints hurting, oh and lets not forget the wonderful nightsweats and hot flashes with cold flashes throughout the day. I even get the mouth sores and nose sores, sometimes headaches. I have been using percocet for the pain for about four months and I must say when I take them I feel more human than any other time. I don’t feel as weak, fatigued, and no pain!! I am building a tolerance to them though. I am just getting worried cause I don’t think my GI will keep giving them to me and I understand the reasons, but what else do I do. I have a six year old and a two year old and the later is very energetic, how can I take care of them and enjoy them when I am in this pain and weakness. I am only 30 and most of the time feel like I am 60.
I am one of those that thinks maybe I really don’t have crohn’s and think this is some mistake, but then I have to realize it isn’t a mistake it is now life. I have been very emotional the last couple of days and cry at everything. Sorry to come and complain but no one understands eventhough they really try. I am lucky cause I have a very good support system with my family, but if you don’t have it I don’t think you can really understand what it is like. I talked to my family practice doctor and he said he won’t give me anything cause he doesn’t like giving out narcotics. He has given the percocets to me a couple of times but he won’t anymore. I originally went to him before I knew that I had crohn’s when I had the diarhea for four weeks straight 15-20 times a day and the cramping pain, and he didn’t even give me a blood test….nothing, I went to him two more times after that before I went to a different doctor and she referred me to go to a gi after she had done some testing. Still not sure why I keep going back to my family practice doctor, he is great with my kids but has never really helped me too much, maybe it is time for a change. Well thanks for listening to me vent, I really needed to and I love this site, it has been very helpful and so have all of you. I will check back often. And bless you others that have it even harder than I do. It is a hard and long battle.
HELP!
I’ve been having a flare up for 3weeks. Started in hospital -released and the flare up continues. I am on 40mg of Pres. and dyl. For pain. It’s not helping. Norco does not take the pain away -but helps if i double the dose. I’m out of norco now and the dr acts like I’m a junkie. I went back in for a cat scan – they said I needed another if I wanted pain meds – five days later no call back. No relief. Pain is burning and what feels like labor pains. What do I do? I have a 16 month old son. ,I’m a single mother, trying to keep my job. All i want to do is lay down but can’t. My right side has red marks from me applying pressure to the pain.
@ Melissa – One thing I’ve learned is you HAVE to stay on top of these doctors. Question their doses, if they don’t call you within a reasonable period of time for whatever it is they are doing, call them.. and keep calling until you get answers. Be sweet (you catch more flies with honey than vinegar and all that), I tell them I’m sorry i keep bothering them, but I just hurt so much and please call me to let me know what I can do. Since it was a holiday weekend, taking a few extra days is probably expected, not appreciated by the sick and pained though.
If you are in pain – GO to the hospital, ER.. tell them you hurt, tell them you’ve had a cat scan and you still don’t have anything to help with the pain.. they should be able call wherever the cat scan was done and get that info – even to get a copy of the info for a doctor on their staff to read right then. And should be able to help you out with the pain, for a few days if nothing else. They know you are trying to get things under control if you are following up on appointments, getting tests done, etc. They should be able to see what’s going on – though a cat scan might not show a lot.
Have you tried anything else to help alleviate the pain – like warm compresses, or warm (or hot) baths.. Lay down as much as you are able to. In a flare, you need rest for sure – the dishes won’t do themselves, but you don’t have to worry about them all right now. They’ll wait. Make simple dinners. Maybe friends will offer to come over and sit with you and help with your son – you get to hang out and visit, you get help too. Make things as simple as possible for you and your son… you want him snuggle with you, have him bring you books and lay and read books together.. watch tv or movies together..
I have crohns for about 10 years but it was mostly just a fistula with few other complications that didnt bother me.
Until about 3 years ago when i started losing lots of weight and had those terrible pains. After few month of trying different meds i had such a strong pain that i got to ER. There i got morphine and IV (no actual food). After a day a stopped asking for morphine and lived on IV for a week. That was the best time for me, nothing hurt, i gained some weight and i didnt want to leave.
Now i’m going through this pain again and just trying to manage it on my own. It usually goes away by the morning and starts again around 3-4pm.
I keep thinking back to my IV days and considering getting an IV for my home and only “eat” through the veins.
ive had crohnes for 15 years i just had a portocath put in my chest and i now get iv nutrition every day for 12 hours this is really helping me im puting on weight & feeling a little better but i still have very bad pain all the time & take 5mg vicodin and 50mg tramodal every 6 hours but it doesnt always help the pain if i take 2 of the vicodin and the tramodal it seems to work im gonna try a pain clinic this week has anyone had any luck with painclinics?
i have also been having some trouble with my family about me taking pain meds my brother now thinks im a junky and has convinced other people that to. he has no idea what i go threw on a day to day bases. how do i get my family back? how can i make them understand im in a lot of pain i need the meds theres no reason i should live with terrible pain
I’ve had Crohn’s for 2 years now (first diagnosed as diverticulitis) but, I haven’t had as sever pain as I do now until after I had a colonoscopy in May (my birthday present, yay!).
The funny thing is; I had more pain relief on the Cipro and Metronidazol than I have with Pentasa but, I had nausea.
I started taking aspirin before I read these ariticles and NSAIDs (I was attracted to the “anti inflammatory” part).
Thank you all for the advice. I’m going to try a few of these out and go from there.
My twin sister has Crohnes. She is in the hospital right now with an intestinal obstruction in lots of pain. Every time they give her Morphine her pain gets worse. They are giving her Toradol now. I know that is a risk for her kidneys. She has a NG Tube in. Have any of you experienced spasms when you’ve received Morphine or Dilaudid? Have you had any luck with Ultram? Thanks for your help. I heart goes out to each and everyone of you. I see the suffering my sister has gone through and I can’t believe there aren’t better solutions out there for people with Crohnes. Bless you all.
Hi I am 25 yrs. old and was diagnosed with
Crohn’s 6 yrs ago. I was initially diagnosed with appendicitis but after a few tests a ct confirmed that it was crohn’s and my pain was a complete obstruction that they had to remove along with many feet of severely diseased intestine. After that I went almost 5 yrs. with very little pain. In the last year and a half I have began to notice alot more pain. I, like many of you, have notived that tylenol doesnt help this pain at all. I have struggled with the decision to see a pain manafement dr. for a few months now and have decided that it is time to go for it. I say this to let people reading this know that even though you may not know the day to day pain that alot of sufferers do, it is real and sometimes there is nothing that you can do about it other than take another pill
I’m 22 and I’ve had Crohn’s since I was 12. When I was younger, I would have flare-ups about once a year for about a month and now I am getting them once every two months. I am not on any pain medications but I am on Asacol. When I am not having a flare-up, i feel great. When I am, however, I am stuck in bed and can’t move. I throw up because nothing will stay down, not even medicine. I am sick of it and sometimes I ask myself why, I still do, but then i just tell myself that i have to deal with it. I feel like my boss thinks I am overexaggerating when I can’t come in to work for a full week, and people don’t really understand that pain. I lose lots of weight.
I will use some of the suggestions presented to me here on this site. It is nice to see that I am not alone.
Thanks to you all.
I was also curious, does pain get worse when you are pregnant? does anyone have experience with that?
hi. i am 23 and i have had crohns for almost 4 years now. i just came across this site and thought i could post a few things to help others. and maybe get some questions answered as well. when i first got diagnosed i started on 40mg of prednisone and 25 mg of imuran and worked my way to 15 mg of prednisone and 150mg of imuran. they say that imuran takes 3months before it really works but it seemed to work a little faster for me. i felt pretty good for about 2 years with little bouts of pain here and there. and in 2009 i stopped taking any meds. i felt normal again. and could eat just about anything i wanted. my doctor didnt like this but still supported me. now it is the end of 2010 and i am having horrible flare ups again and i am back on the same medication. i hope they help. i find that i feel well about 3 hours after i wake up and take my pills, untill i go to bed. i wake up with pain all the time. and mornings are horrible for me. is anyone else unable to eat breafeast? even if i feel well in the morning, as soon as i eat anything, the pain and irritation hits me. which is awful because i have to take my meds with food. basically the only thing i can stomach in the morning is a bananna. the three biggest problems i have with crohns are: weight loss (i generally lose around 25 pounds when i have a flare up). fatigue. and a sore lower back.
anyways here are a few things that i find help me deal with the pain. lying down on my side (for some reason stretched out on my back always hurts, i miss sleeping like that). tea. hot showers. cannabis. i am not going to preach smoking pot. but it really does help. the only problem i find with it, is i get very lazy and unmotivated, so i dont think its a good med for every day life. however if you are having trouble sleeping due to pain, it is the perfect med.
when i am having a flare up i avoid a lot of foods and beverages. foods that are rough on the digestive track like steak, apples, carrots and nuts. also coffee can be quite irritable. i have a lot of problems with dairy, but only during a flare up. does anyone else have that?
I am a 21 year old who was diagnosed with Crohn’s disease at the age of 13. I have been on prednisone since my diagnosis, and it would always work until I got to a really low dose (ex: 10mg). The pain has been intense and it has been months of tears and frustration. I am finally getting my first remicade infusion and hopefully this will help! I’m ready to take back my life again.
I have had Chrons since I was 17 yrs old and now 31. 2 yrs ago I have a full colectomy and was left with an ileostomy and 2 ft of my large intenstines removed as well. I have fistualizing Chrons and even with my “bum” sown up I got 3 more fistulas back over and over again. I have been in severe pain from head to toe for the past yr. There are days if the wind blows hard enough I could cry. I have to work full time so I don’t have the option of staying home and laying with my 2 heating pads. I was with my dr for 6 yrs. He “understood” my pain and gave me vicodin 5mg for 6 months, only recently did he increase it to 7.5 only “allowing” me to take 2 a day. I told him that there are days when I need more considering I have been hospitalized 3 times for obstructions so the point that my “out put” was coming out via vomit. He was affraid for me to become addicted to the pain meds. There were days that I would cry cause I hurt so much. Finally I went to another GI and brought my chart so that the new dr could see that I have tried every medication p.o and all biologics only to have reactions to them that were so severe that ended me up in the hospital and of course my iluem. The dr understands that I am not a “junkie” and is helping me slowly trying to find the best medication for me. I started with 10mg percocet 1 q6 hrs. It seems to be working if I stay with it. Chrons pt’s live with pain. I hate feeling like I am looked at as a “junkie” It is the people who dr shop and get whatever they want just so they can feel the high. I challeng those people to walk a day in our shoes, them maybe they wouldn’t want to take the pills just to feel like you can accomplish a day. I am a far cry from a junkie and if I could I wouldn’t take them. I have thought about going to a pain mangement dr but I am not there mentally yet. I have faith in my new dr who was taken back that my previous dr didn’t try and help me a little bit better. Chrons is NOT a textbook disease. Every pt is different and needs to be treated differently. I am relieved to read the posts and see that I am not alone.
Hello everyone. I have kind of a unique situation here I think. I am 23 y/o, and was dx’d w/ Crohn’s at the age of 6 I think. I haven’t had any formidable symptoms in over a decade. Now, it seems like all hell has broken loose.
What’s unique about my situation however, is that I am a recovering addict. I was addicted to pain killers and heroin for years. I have been sober from illicit drugs for quite some time now, but I still find it challenging to take my pain meds as prescribed. I have been very upfront with my PCP about my addiction. My family, understandably is very opposed to me taking narcotics, but nothing else works for me. I am at a total loss. My doctor treats me like a junkie now. I don’t know what to do. I have a family friend who is a Pain Medicine doc, whom I think I could get in to see with relative ease, but I don’t know what he would do for me.
If there is anyone on here who has suffered from addiction to narcotics related to Crohn’s or not, I’m throwing out a line. I’ve read this entire thread, and see a lot of people denying any dependence or addiction. But I’m here to tell you that it happens to the best of us, and that it’s okay. What’s important is that you’re honest with yourself about it. I have no trouble admitting that I’m an addict. Do I have all the answers? No. Do I have the slightest clue about how to best manage my Crohn’s pain? No. But I think this topic needed to be broached here. Let me know what you think.
Hi, about half a year or so after I was diagnosed with crohns, I started getting random knee pain, but sometimes it would be so bad that I would just have to quit what I’m doing and go lie down. A few weeks ago my doctor (who is a specialist with IBD’s) told me to take advil (ibuprofen). I was worried when I saw the label said it can cause stomach bleeding. I’m sure it’s out of the picture to ask for opiods, or god forbid, medical marijuana. Even though I’m only 15, I still have all the pain of an adult.
Hello-I am so glad I found this site! I have suffered with Crohns &IBS for 22 yrs now. In and out of the hospital like crazy! I am a mommy to 4 amazing children and have been really lucky over the last few yrs. NO FLARES..well, none that where hospital worthy. When I was expecting my 4th child, I was in and out of the hospital almost monthly with flares. It was TERRIABLE! Since his birth, I have worked with my GI dr’s to find a regimine that works for ME..not a textbook.This is SOOO important! Resently..as in the past 48hrs, I’ve been having a flare. I just called my GI to have a few meds called in, naturally, there is only one dr. in today, so it could take a while. Just my luck I get a flare on the day of one of the worst snow storms we’ve ever had…nice! I read a few post where there where questions as to if anyone had luck with Ultram (tramadol) working for the pain. I am one of those whom it works WONDERS for. I’ve noticed anything codine based, makes things worse for me. Nevermind the fact that in MOST states, Ultram is NOT a controlled substance. It’s only been on our controlled list for the past few years. So most dr’s feel “ok” with perscribing it. So, guess what I’m sayingis…if ya haven’t tried it..give it a go. GOOD LUCK!
hello to all. i just came across this website while doing research for pain management and crohns. i have had crohns disease since 2002. i had my first surgery in nov of 2002 and just had another surgery in jan of 2010. The surgery in 2010 went bad and i went septic and almost died. many of the forums and websites about crohns disease and pain management say that you just have to deal with pain and should not rely on narcotics for the pain. it is good to see so many people with the same outlook as me. When i take the pain meds i find that my quality of life increases so much. i notice that when im in pain and do not take pain meeds for it i am miserable and just lay in bed rolled up in a ball. when im in aim and take the meds i can go on with my life and enjoy life to the fullest.
Next Comments →