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..
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I go to a research crohn’s hospital. They do not prescribe pain meds. My doctor has crohns himself. It is hard to get through flare ups with outs meds but it can be done. Meditation, heat & ice, massage, music, prayer & a very health conscious diet. Knowing what affects you is SO important. I’ve found caffeine is a trigger! Have your doctor regularly check blood levels for deficiencies as well. I am deficient in B12, Vitamin D, Folic Acid & Potassium. It is a good thing to seek out a gastro professional as well. PCP’s are great, but for a disease like this, a specialist can give you so much more! Just because something works for one person doesn’t mean it will work for you, so don’t get discouraged. Its been a VERY long, hard, sickly road for me, but I’m finally learning how to live with crohn’s, not how to put up with it.
My name is Ryan and im about to hit one year since being diagnosed with crohns< i still dont know much about it. However I do know and share the pain you all feel and speak out about very bravely My pain can get so intense in my lower back abdomin and thigh and legs thati can do nothing more but roll up into a ball. and cry it out, My girlfriend wets towels and nukes them in the microwave until they get very hot, Then i lay on floor, and she covers my back in the hot towels, I have found this to be very affective, sadly iit only lasts as long as the heat in the towels, I never wanted to start pain killers. But feel that is one of my last options to deal with the severity of pain. Just like most of the stories I read on here i have been afraid to bring up the option of narcotic painkillers in fear of being looked down and judged, But i would cut my own leg just to get some relief from the ongoing pain i do experience. It's very real, and it's very unbearable. And I need something that can help more then a bath or changing my diet.
I have had crohn’s for 15 years now. I have had a few surgeries and I have been on and off meds for years. When I am having a bad flare, When I can’t take the pain anymore, there is nothing I can do to help it but stop eating and go to the ER for help. Bowel rest with the right meds seem to help me the most. I usually stay in the hospital for about a week. Taking meds by IV are much more effective for me. When my stomach is just being sensitive I try to eat light meals like soup and I do all of the home treatments. Heating pads work very well for me. This is a horrible thing to have, and everyone’s case is different. Make sure that you find a doctor that really listens to you. If you are having severe pain, don’t wait to long to seek medical help because the longer you wait the worse it gets the harder it is to get under control, or there could be something really wrong that requires surgery. Listen to your body. It can be very frustrating, but remember that you are not alone. Good luck to everyone and Take care!
One more thing to add. I just read that someone was asking about crohn’s while pregnant. This is my personal experience. My first pregnancy was perfect. I had no signs of crohn’s. I ate everything and I felt amazing. My second pregnancy was really bad. I was on meds from day one. Hospitalization, bowel rest, X-rays everything that you shouldn’t take or do while pregnant I did. Flares happened until she was induced 3 weeks early. She is 4 now and thank God she is healthy and perfect. Like I said before every case is different like every pregnancy is different. Most of the time you have a wonderful perfect healthy pregnancy. I have done my research and with a healthy diet and exercise you should be fine. If you do need to take meds. Most of them are baby friendly. Good Luck.
I can’t believe that I just now found this site! Well, I am 27 now and I have had Crohn’s since the age of 13 (yay me). Over the years I have found that my diet has changed. I was originally told to stay away from popcorn for the rest of my life. I was also placed on low fiber diet. I had no problems with dairy, beef, spicy food, etc. Well, as of two years ago, I can no longer eat beef-moreso hamburgers and steaks past 6pm. Just a few months ago, my doctor hits me with the idea of possibly now being lactose intolerant-does this ever stop?! I love dairy!!!!!
As for treatment, I am currently on Remicade in which I have responded very well to. I have been on it since 2002. However, I do have occasional pain-and boy it hurts! Unfortunately, I fall into the category of not being prescribed the propoer pain medication for relief. I feel as though I am being tortured. Crohn’s pain hurts, and it is hard to get that point across to someone who has never had to endure anything of the sort!
Anyhoo…I am now currently seeking a new physician…I am greatful for the Remicade, but I need not to live in fear of the next painful episode that I just have to crawl up in bed and bare through.
Maybe I’m just venting right now, because I am currently having an episode(and have recently been told that I could also now possibly have IBS as well)-but this blog has really provided some relief in the midst of the pain. Sometimes it really helps to know that you are not an alien…even if so….I am not alone! LOL! Thank you all for that relief!
I feel terrible because my 15 year old son, who was diagnosed with Crohn’s since he was 10, has to be put on the Humira pen. He’s been taking Lialda, but it pretty muched stopped working. He’s missing so much school. I’ve been reading up on Humira and it’s so freaking scary! The side affects I’ve read about seem REALLY BAD!! I like the idea of cannabis, Mike, but he’s a little young yet. Has anyone tried the Specific Carb diet, or any natural remedies with any success? Just wish I could have it instead of him…
I am 22 yrs old and I was diagnosed with crohn’s disease when I was 17 (my senior year in h.s) At the time that I was diagnosed i hadn’t experienced half of the symptoms that I have experienced post “treatments” and diagnosis. To be honest I feel thoroughly dehumanized and experimented on by my doctors. Azathiaprine doesnt help, metronidazol doesnt help nor does cyprofloxicin. when I conveyed to my doctors that they dont work he continued to prescribe them and I refused to take them. Im not gonna pay for a medication that doesnt help. In the meantime I am taking Remicade, the Miricle
miracle drug, It worked really well in the first year and its been all downhill since. I cant sleep now because of the pain. the baths certainly help for the moment but the pain returns shortly after. Im so over doctors who dont have my condition telling me how to manage it because they just dont get it. Im sick as a dog and I praying to get better before my graduation on monday. I have truly found that this disease does what it pleases nevertheless I refuse to let crohns disease live my life for me. The crohns is apart of me I am not apart of the crohns.
thank god i found this site!! Iam beyond frustrated. im in so much pain i cannot stand it. I was finally diagnosed with crohns after 7 yes 7 years of suffering .i figure ive had this disease off and on since age 15. im now 56 ive had 2 major gi bleeds and almost died twice now the diarrhea is better because i take 9 400mg tablets of generic asacol- yes u can get it through canada but the pain is awful and now i have a stomach ulcer as well. my last colonoscopy was supposedly good. how can that be?? i still am having terrible pain in my lower right quadrant. some days i feel i cannot live the rest of my life like this. I have good doctors but am thinking of going to the major university hospital here. i just wish they could experience the pain and sick feeling all the time believe me they would be down in the er 24/7!!!! i take prozac also that helps because my first husband died young and i got very depressed. my last job got rid of me . im curious about humira or other drugs at this point im willing to try and do just about anything. the past 2 weeks ive been taking vicodin but i dont want to start taking these kind of drugs… thank u for listening…
I was diagnosed with ulcerative colitis at age 10 and now(nearly 11 years later) am being told it’s been Crohn’s all along. I was in remission for many years but had several other major health issues due to my disease.
The past year I have been in a terrible flare and nothing seems to work anymore. I was put onto 2 shots a week of humira and my Dr. upped my purenthal(6mp) to 150 mg a day. I’m also still on prednisone and nothing is working.
I’m considering being a part of a stem cell research study for Crohn’s but I’m worried that with my luck it could make me even more sick rather than better.
Warm baths help with the pain and heating pads are nice but nothing else seems to be working anymore. I am watching what I eat fairly well(I gave up grains, legumes, processed foods, beef, pork, and many other things) but I guess I could be a little more strict if I knew exactly what foods were good to eat for someone with Crohns and why!
Has anyone had luck with a holistic approach? Western medication is just not helping. I want to know if things like acupuncture or anything might be effective?
I’ve had crohns since I was a child, but didn’t display enough symptoms for diagnoses until I was in my early 30′s. By then I was so ill and thin my sister’s doctor got in straight into hospital via A&E.
Though I’ve had some really bad flares up, I’ve managed to avoid surgery or further hospitalisation. Mostly I keep it under control with meds and diet. I keep foods as simple as possible, in very small amounts and as healthy as possible avioding caffiene, alcohol, meals out, take aways and fried food. No fish and chips!!It can be sooo boring!
I’m having a flare up at the moment which is very very painful.Being crippled up with pain makes my job as an independant carer and housekeeper almost impossible. After 2 days at home lying as still as possible and eating very little to give my body a rest, I’ve had to go back to work. I’m self employed!!
The lack of decent pain management is the thing that annoys me the most. If there was something I could take just to get me through I would probably take it. Now in my early fifties, nothing seems to have changed……thank you for listening everyone.
@ Rachel
I have a friend that has Crohn’s & she gets accupuncture & believes it helps her, but as you know everyone responds to things differently. It’s worth a try!
I haven’t yet been diagnosed,but my life right now is completely miserable. I have dropped 35lbs.this last year,everytime I think I got my eating habits down packed something else irratates it,I look 4months pregnant before bed regularly…so upsetting…I have an appointment tommorow to start the process,and just wanted to thank everyone here for your stories it has giving me the motivation to start living my life again and stop being stressed,sore,and aggravated daily.
Samara… I’ve just approved your comment here…. but I read it a while ago, when it first came through to me. I’m wondering how you are doing now.. what’s going on with you.. how things are going with your doctor and if you’ve found what’s going on with your body… Interested to hear and hoping things are taking an upturn for you.
Awww.. Anni.. I understand. My husband is self-employed and the jobs and money won’t wait or be there, if he doesn’t work. He has IBS (he won’t get diagnosed, so we aren’t sure, but I suspect colitis – as his cousin also has it). Now that I’ve been home the past couple years, I wonder how I managed to work through all the pain I did and go to work every day… thankfully, my job was very lenient (in that I could sit around and do little – but stressful in that my boss was nuts -still is too, haha).
I wish I had offers or suggestions to help you out.
My sister had colitis.. she’s gone back to a vegan diet – eating a lot of raw. She’s working for this place in florida that teaches you how to eat, juicing, etc. I’ll ask her the name of it. And I do have a couple books I”ve gotten from my mom about eating sprouts and stuff. My sister is doing awesome – and I’ve still got pain from crohns and I get migraines now weekly. I do plan to try some of the stuff she suggests.. but when I do, I’ll post about it here on Coping with Crohns in case others are interested in reading about it too.
And yes.. the lack of pain management is my biggest gripe. I just don’t understand how we are suppose to live fulfilling lives with so much pain – and so many diseases revolve around pain.. but doctors are afraid of the addicts.. sigh… feel free to come back and chat any time. I keep thinking about starting a forum…. but not sure anyone would really enjoy it much.. dunno.
Rachel.. the reply i wrote to Anni might be of interest to you too.. about vegan eating, and raw diets.. sprouts and juicing. I’ll find my books and see what the place is called my sister works out. She swears by it all – says she feels 12 again – in energy and health.. I just feel overwhelmed with the thought of that extreme of a diet change – when I have kids and husband I know I wouldn’t force that on.. yk? I know it’s been a month since you commented here.. but I’m curious where you are with things now. have you made any changes or thoughts about changes? How are you feeling now?
Hello All. I was diagnosed with Crohn’s when I was 16. I am now 42 and have been so very fortunate to have it under control most of my adult life. I am a vegetarian, eat extremely healthy, organic most of the time. I have no idea if that is why I’ve done so well…I know everyone is different. But I remember before going vegetarian/organic I could end up on the floor of a shopping mall, doubled over in pain. My husband had to carry out me out once when I was 25. My daughter, who is now 10, has had stomach issues pretty much since she was 2. She’s had 2 colonoscopy’s and 2 endoscopy’s and was just diagnosed with Crohn’s last year. It breaks my heart to know I passed this on to her. She suffers terribly with the pain. But, for all of you that have asked about holisitcs, I would highly recommend seeking out a professional natural/holisitc doctor in your area. We are currently treating her with a holistic program through a holistic gastroenterologist just outside of the Boston, Ma. area. (We live in Western Mass.) His therapy has been wonderful for her. We also are seeking additional help for her through a natural doctor closer to home, who is testing her for food sensativities so we’ll know exactly what foods she needs to avoid. We have seen a huge difference in her since using the holistic approach, and I know from my own experience how well it has worked for me. Everyone is different, but when we’re talking about a lifetime of pain, surgeries, and drugs, it can’t hurt to try a holistic approach and see what it can do for you or your child.
I was just diagnosed with Chrohn’s last week ( I am 34 years old) and have been in pain for the past three months, although I suspect I have had it for sometime. It finally hit me last night (when I was awoken in the middle of the night with severe rectal pain), that this is my life now and that I have to deal with this horrible pain for the rest of my life. I sobbed and feel at a complete loss loss at how to manage my pain and still be a mother, wife and employee. I was put on asacol and I am hoping it will help put me in remission.
I have been charting my pain and I have found that the pain increases around my ovulation time, which I find odd. My husband and I have been trying to get pregnant for the past 4 months and have been unsuccessful. I have read that active Chrohns can impact your fertitlity and I am just devastated.
I have been trying to stay away from high fiber foods, but sometimes I just don’t have an appetite despite being hungry. I am very scared and frustrated.
Hey I have read all these stories about what helps and how to talk to your Gastro but mine will NOT listen. I am 7 months pregnant and I have had Crohn’s and UC for 8 1/2 years. My doctor says it is impossible for me to have both which my other Gastro before this one has been with me since I have been diagnosed. My stomach pain is so severe now the level I at a 9. I really don’t know what to do. I get Remicade which is a miracle in a bag for me but I get it every two months. My Gastro absolutely refuses to give it to me sooner even tho my high risk OB said it was fine. How do I get him to change his mind? He will NOT listen to me or anyone else about this. I am very worried about my unborn son if I hurt this much I can’t imagine what it is doing to him. In my pregnancy I have lost 44 LBS but recently gained 20. I do not know what to do I am very scared. Maybe I’m just ranting I am having a BAD flare up right now I am laying in the warm bath tub because of the pain which usually works but it’s not helping at all. Please someone help.
Jess – Congratulations on your pregnancy. As for your doctor not believing you have both Crohn’s and UC – which doctor is this? A different Gastro? Why have you switched? That’s just a curiosity question
— In my opinion, if you are having issues with your current doctor, aren’t happy with him/her, or feel s/he doesn’t listen, you are under no obligation to stay with that doctor. Remember, You employ them… you wouldn’t necessarily want a doctor you don’t like birthing your baby, right? First step, I’d say is get a new doctor.
As for the pain you are having… I don’t know whether or not it would be affecting your son.. my quick assumption would be that no it wouldn’t be… but when my crohn’s first reared it’s ugly head, my cervix and uterus were so swollen and in so much pain the doctor made a quick diagnosis of PID…
Be proactive (and I know how flippin’ hard that is when you are in a flare.. the last thing you want to do is – *anything* and that includes calling new doctors and making yourself go to yet another new appt.)… but I think a new doctor would maybe be a good thing.
Im 23 years old and i’ve had since I was 12. Iv been on humaira, remicade, methaltrexate, and many more meds and also have been through surgery and nothing helps the pain I get in my knees and my lower back. The only thing that truely works for me is pain meds like percocet. the pain does come and go and its not a everyday issue but it would be nice to have some meds that really work when the pain does come around. I know that pain meds can become an addiction but it can also be taken responsibly because there are people who are in serious pain and acually need it
Forget the pills for pain.Have U/C 20 yrs. now cannibis is the way!
Have to chuckle – I just made a pot of herb butter, in hopes trying that direction. I’m not, and never have been a cannibis smoker – I just can’t handle the high… but now I’ve got this really nasty smelling butter (I’m told this is normal *winks*) and I haven’t made anything with it. Thinking fudge. On that note though, I’m curious how things are going to play out with medical marijuana… I’m expecting to see more states fall into line with it, but then I hear the president is taking steps to put the brakes on states who have already.
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