Colitis Pain Survey Q-6

Question 6:

Any comment or thoughts UC’ers thought would benefit others are listed below:

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  • I was told for 15 yrs (since I was 16) that diet doesn’t impact your colitis. Well my 4th colonoscopy (2/2013) came back going from proctitis to full colitis throughout the colon. In 11/2013, I changed my diet, lifestyle, and in 2/2014 I got off my colitis meds (they were causing high liver levels), went on probiotics, and my last colonoscopy 2015, came back to being just proctitis again, all the rest of it is “magically gone” and I haven’t been on any colitis meds since. Inform yourselves, research, don’t leave your health in the hands of anyone but yourself, be your best advocate! Don’t lose hope!
  • Also worth checking out. Herbs and natural allergen elimination therapy to help you determine food and environmental sensitives that will aggravate symptoms. Good luck!
  • Heating pads save my life!
  • Currently trying a capsule supplement called OXY powder and am getting very good results.
  • I HATE HATE HATE Bentyl. It makes me feel weird. I cannot describe it but I cannot stand how I feel while taking it. It does help, however.
  • Hang in there! What works for some, may not for others, but don’t give up. There are lots of options out there today, and quite a few take some time to work. For myself, I have found avoiding fiber of any kind during a flare to be extremely helpful (although I’m sure my heart and arteries hate me for it!)Nicotine stops the bleeding for me…I don’t smoke, but do vape…feels like I have to choose between my colon and my cardiovascular system! My UC has been in remission for over a year now, despite the high stress of being recently widowed. Just be persistent, and don’t let The Beast win!!!
  • If you can control the colitis the pain may fade
  • Although I have never experienced abdominal pain related to flare-ups, I did have extreme discomfort in my abdomen during flareups. My stomach would feel very queasy and unsettled for weeks at a time.The peripheral arthritic pain was a different story but I am happy to say that after being inflammation-free for over three years now, I have not experienced any of these side effects.
  • After your colon is removed are there other things related to uc
  • These are my past experiences since I’ve had the third and final takedown surgery in late August 2015 after an Illeostomy created in February 2015 and the J-Pouch created on June 30. Very happy with results and to my elevated standard of living as a result of the surgeries.
  • I have a constant tightness in the left side of my gut. This has been there since my first major flare back in 2012. I went off medications completely roughly 2 years ago and have been doing great. I still experience the pinch in my left side at all times of the day, usually it is less in the morning and more in the evening.
  • Prednisone helps a lot but can’t be used for the long term.
  • Opioids seem to not only help with the pain, but also cause relative constipation, which as we all know is a blessing. I no longer mess myself.
  • Diagnosed Feb 2015 , I seem to be in remission, but when i wasn’t, i don’t recall any pain
  • Pain meds are the way to go. It’s the only thing that works right away. Plus than you can relax.
  • Don’t tell your co-workers because they will turn on you like a sick hen gets picked to death by the other hens. Ask your family for help, just try not to withdraw, or they will not know what’s happening, and just think that you are lazy or sulky. Let them know how much pain that you are in and how you can do all activities, just on a much lesser scale. It doesn’t mean that you are feeling well if you continue to work, study, etc. But please stop with the dramatics unless you are ill enough to call am ambulance and be hospitalized.
  • Just spasming a lot during a bowel movement is strenuous but not necessarily painful
  • ?: According to blood work uc is under control. Still having pain and bleeding. I don’t think of it as under control? Any thoughts greatly appreciated
  • The muscle and joint aches and pains that I experience seem to be harder on me than the Ulcerative Colitis.
  • I have – what I assume to be – arthritis associated with my UC …. avoid pain meds and currently to keep moving is my best medicine … yoga – low impact exercise – and water exercise seem best … soon to try a yoga water therapy class to keep my pain to a minimum
  • Deep tummy breathing seems to help!!
  • Have been in prednisone for two months again, as well as apricot and mercaptopurine. Still not in remission. Dr has stated he would like me to consider Humira, but I’m a senior citizen now and am unsure of the side effects.
  • For my last flare up I had to increase my sulofalk dosage. Thankfully it settled back down after about 4 days.
    After a major flare up that was lingering for 2 years, then got so bad was in the hospital for 5 days, was on cortisone foam for 6 weeks, took all the pain and inflammation down (was so great to be ‘normal’ with my bowels, and not have to worry about my diet. Which brought my stress levels down too.). Was also on azotheroprine for about 10 weeks. I was in total remission so I could come off it (as I may want another baby and they advise that it is not good to be pregnant while on immunosuppressives). I now remain faithful with the sulofalk as I don’t want another flare up.
    Also I am working weekly with a psychologist as it is related to my emotional/physical stress. It is helping a great deal. Also working with some energy therapy, calming the solar plexus chakra. Getting in touch with my body and the signs of stress and how to turn it off/ or clam it.
  • I have had many pain meds over the years, but detested taking strong tablets in large quantities, so tried various diets, wheatgrass and even Oramorph.
  • metamucil berry powder(another miracle) in 6 ounces of water 3times a day
    along with a probiotic(very true potency) from HMF Forte
    kellogs bran flakes every morning and everyn ight
    and Dr.UDO’s omega 3,6,9, with DHL all helped to ease the burden(from plants)
  • The most efective way for management of my UC in my case appeared to be reducing weight. It is important to note that I didn’t have any problems with overweight, but losing 10 kg. was very effective for my UC management. I’m 178 cm. tall and two years ago my weight was 84 kg., now I’m 74 kg. and this help to me to succesfully manage UC.
  • In august 2015, my Uc was active, and made a trip up to the mountains, we were at 10,000 feet of elevation, and cause of my UC I wasn’t drinking enough liquids, cause I did not wanted to be in the bathroom most of the time, so I was limiting my water and food intake.
    before heading up to the mountains like two weeks before I was struggling with fevers on and off!
    so while up there out of who knows where my ankles started to swell, to the point that I couldn’t walk for like 3 days cause of the swelling, at that time I wasn’t taking any medicine for my UC flare, so I was afraid to take any anti-inflammatory, due to the symptoms of the uc, I did not wanted to make it worst.
    I meet with my uc doctor and asked him about the pain, and swollen in my ankles and he said that he didn’t have a clue why!!
    so my guess is the altitude, lack of fluids and food.
    If you go up to a certain elevation and planning in been there for one or two days, make sure that you stay hydrated and your food easy to digest! of course if you havin a flare up!
  • I use a naturopath doctor and he has helped greatly. Dr. P uckette (Madison, WI) uses chiropractic adjustments, nutrition, supplement and brain therapy to control UC. It has been working for me! I tried various prescription medications and ended up hospitalized due to an allergic reaction to Humira. Dr. P uckette has been outstanding.
  • Good days, and bad days, just make the most of the good ones.
  • Communicate with your dr. Don’t be afraid to ask questions. Write down your thoughts keep a journal
  • I have used Tylenol most frequently. Ibuprofen is a big no-no. There are some herbal tea pain remedies that work as well.
  • I take 2sachets of vsl3 daily . During flare up prednisalone.
  • Just be calm and relax whuen you have a flareup.
  • I only take Tylenol rarely when really in pain.
  • I have had some very serious flares in the past, and have been hospitalized twice for a total of 59 days, but I consider myself very fortunate that I don’t experience a lot of pain. I have heard that UC pain can be extreme for some. I do get bloating/gas from time to time, but that is usually when my normal diet gets interrupted, usually due to business travel. I make my own yogurt and use it as the base for daily smoothies very similar to Adam’s recipe, spinach or other greens, banana, wild blueberries, strawberries, ginger, turmeric and honey work very well for me to eliminate gas/bloating which can get painful if not resolved.
  • I’ve had UC for 25 years and was in remission for 16 of those…during those 16 years, I didn’t realize how great life could be. But when I recently started going through menopause, the UC flared and it has come back with a vengeance. I had to start to a different doc as mine wasn’t on my insurance. I saw the doc and his physician’s assistant. I never could get the PA to really understand exactly what I was going through…Then she just recommended a $400/month prescription. I had to tell her that I was a single mom with not the greatest insurance and that I couldn’t afford that. Then the meds she put me on were $120/month and didn’t really work. I never could get them to see this and that I was still in pain. I miss those years of remission, and now I have a teenage son showing symptoms of having UC and it breaks my heart that the research doesn’t seem to be there to really help those who suffer.
  • Reason of back pain in interscapular area and dependent areas ( areas which are in contact with bed ) during early hours of morning may be side effect of long term drug intake i.e Mesalamine or like drugs.
  • Pain comes and goes. Sometimes at the worst time and a restroom is no where around(that is the worst). With my job, I really have to watch when I eat, what I eat, and how much I eat to prevent any issues. Sometimes it is completely unexpected and usually have to go to the bathroom immediately. Ya’ll are awesome, thanks for all the input and support
  • When my daughter gets really bad stomachs pain from her colitis it’s usually relieved by Turmeric
  • The pain is usually accompanied by gut noises that would indicate I should have had a starring roll in “Alien”. I sit as I fear an explosive accident.
  • I am in remission for the last two years. Long may it last. Wish me luck. Peter
  • Having UC is all about having to eat healthier than anyone else and taking regular exercise
  • Please take the time for yourself and body. Try the SCD diet, it has saved my life.
  • Eliminate toxic people from your life. It reduces stress and improves quality of life immensely.
  • find the right doctor
  • Take a good probiotic. Eat more raw food.
  • Managing pain is so difficult and fighting it is of no use.
    You just have to give into it and rest and do what you can to relieve it.
  • Learn how to control your stress asap! Its a killer!
  • As soon as I feel pain, I have learned that its time to rest and take it easy. Especially if I begin to feel fatigue. These are all signs that a flare may be starting. Best thing to do for yourself is to relax, meditate, and take it easy for a few days.
  • This is a horrible disease, however it’s life changing and not life threatening, so I take it one day at a time. No quick fix.
  • Comorbidity is an issue with Fibromyalgia
  • try meditation especially one called the body scan.
  • Heat pads and peppermint tea helps me
  • Narcotic pain medication slows down bowel fiction and provides temporary relief, they also usually have an anti inflammatory associated with them which could aid in temporarily subsiding minor swelling and eliminating some additional symptoms. This may sound miraculous to some, but these are very dangerous drugs and are highly addictive and seriously controlled. Reliance upon them could lead to addiction and then withdrawal of you can’t get them any more. If you choose the route of pain meds, be fully informed beforehand.
  • When uc pain strikes best to try and sleep if you can’t sleep lay out on the couch watch tv and try to relax
  • Don’t isolated your self from your friends and family member,talk to them about your health status,in fact not to feel lonely.
  • I think most of my pain is related to trapped wind, hence a ‘visit’ usually relieves it. But I do get what I can only described as ‘soreness’ in the lower left side of my gut (which is where my UC is located) if I miss a pill dose (very rare!) or if I eat too much between meals – I only take my sulphasalazine with meals, so three times a day, and if I have a meal with no meds or too many snacks between meals, I can feel the irritation of the food in my gut – at least I assume that’s what it is.
  • please look into medical marijuana.
    it’ll change your life.
    I never took weed in any form before UC, and I waited 2 years before trying it.
    I never use in a social setting and in regards to UC it has helped in a number of way
  • Food management
  • Diet is very imp
  • Bowel massage and back massage help a lot with my pain. My pain seems to be wind or blockage related so these can help ease symptoms
  • UC is a battle every single day. I try to remain consistent with my diet. I try to keep stress to a minimum. I pray a lot.
  • Started on golimumab two months ago it has made a big difference down from 15+ visits a day to 4-5 no pain and upto now no reactions quality of life improved
  • I’ve been in a flare since April this year. Finally after being placed on prednisone 20mg tablets for the past 3 weeks and now starting to taper by 5mg every 2 weeks, I’m getting some relief..I’m also taking Balsalazide 3 capsules 3X daily, Canada suppository at night, probiotics 2x are no longer bloody and the rectal pain is almost gone. Frequency has also improved.
  • I have some leg pain in my joints and bones but the worst thing I can’t leave out, because I cant stop going to bathroom.Somedays I will attempt to try and wirk but Im right back in the house because of mistake .Its more frustrating and depression than phsyical pain.
  • I experience different pain during a flare up. While on remission it is usually gas or bloadiness that causes pain.
  • I know it is entirely possible to become symptom free of UC without using drugs, have done so several times. Diet can heal. Drugs to often serve to maintain chronic illness, not heal.
  • I have minor pain pretty much every morning that gets better after pooping. Can’t seem to stop having the pain but not very bad and I can live with it.
  • My pain comes mostly from abdominal cramps. I was given dicyclomine at urgent care, which worked well to calm the spasms.
  • Any kind of surgery even get wisdom teeth removed strikes up the immune system and in flames : The colon automatically have to be put on steroids
  • This too shall pass. Stay strong.
  • I am in the early stages of diagnosis and treatment. Like less than a month. Since the sudden violent onset of at least this phase of UC (maybe it was developing for years?) I’ve noticed immediate and different pain. Of course there’s the abdominal pain and cramps which feel like someone is kneading my guts like you would bread dough. Arghhh. But then there is the joint pain from the inflammation. And considerable headaches from the prednisone I been started on. The Tylenol helps the headaches and joint pain, definitely not the stomach pain.I will try almost anything to help the pain as long as the possible cure isn’t worse than the condition. I feel like I’ve only scratched the surface of possible coping remedies–most of them holistic. Maybe all the exploration and experimentation helps keep my mind off my pain. But not when I’m in full bloom pain in the middle of the night or at work!
  • Basically we have to take care of ourselves! Rest when we need to rest and don’t things you don’t feel you can’t do!
  • I primarily have two types of pain: Joint/mussle pain and a sharp pain in my colon during a flare. I have not found a good remedy for either. I recently visited a rheumatologist and the doctor suggested building my muscles and cardio exercise.
  • I’ve had UC for 34 years now and sometimes the pain during a flare can be so exhausting, so I welcome your thoughts.
  • One day at s time .. Support if you have it is great.. I’ve got a little but lots of people don’t get it….
  • You must do everything in your power to keep mentally healthy for the day to day challenges ofvu.c. and crohns. I like to say, “U.C. will not define me”.
  • everyone reacts differently, no two people are the same. Diet can help, and drinking a lot of water, a lot.
  • Tell your doctor- find a doctor who cares!
  • Prednisone reduced the inflamation ehc releavesv pain.
  • I think that a consistent schedule and routine is helpful to uc’ers. Also, some form of exercise- yoga, meditation, walking. In addition, I am somewhat ritualistic with the foods I eat and the times I eat. The morning is very important as it can effect my entire day. I see a naturopath, take GI Revive daily, get accupuncture. All this is helpful, but not perfect as sometimes schedules are interrupted and with having UC one is often tired (and human) and may not follow through with a set plan. This has been very helpful to me but it is not always perfect. Having a set routine however helps me to keep track and notice what may be the trigger of why I am not feeling well.
  • I have been taking Lialda for the last four half-years and this has worked much better for me. Before that I was on Remicade for a year and a half. The remicade was expensive and I had to do them every seven to eight weeks.
  • Treat the disease, not the pain
  • How to explain situation to co workers
  • For me, taking OTC and prescription pain medication lead to UC flares if I take more than one dose so I avoid them as much as possible. My UC pain comes in short waves and can be very intense at times. It usually goes away after using the bathroom and/or trying to relax.
  • I like to use a heating pad or sometimes ice packs depending on what I feel like. I get most aches in my back and sides. Not really sure if it is uc related but it seems that way.
  • I’m in pain only in times of ‘crisis’ and I’ve only had one so far… and I don’t want another one… so far the meds work and it’s been manageable for the past 2 years… fingers crossed.
  • I feel the pain is do to bowl movements while the large intestine is inflamed. Fasting seems to help the large intestine heal and reduce inflamation. Also taking preventive supplements to help the body deal with inflamation seems to help. I try to take extra virgin olive oil daily, L glutamine, NAG and tumeric when i can remember.
  • After I was put on humara the pain and bleeding stopped.
  • Be careful that you do not become reliant on pain medications. These meds can cause havoc in your GI tract.
    If possible learn meditation, deep breathing, visualization, etc – when you are not in pain. Practice daily so if/when the pain strikes your brain is ready to use the techniques you have practiced and you feel confident . It is no different than practicing to pitch a baseball. When you are in a real game and under pressure you know what to do because you practiced!May we all go into remission fellow UCers!
  • I don’t feel Drs think pain in joints etc is related to UC
  • I have been diagnosted withn UC since July, 2015. I still have a hard time to accept this. But I have my good days and bad days. I think we should keep looking into this site and supporting each other. I check in regularly and it just lets me know that I am not alone with this UC.
  • I know when a flare is coming on if I get pain in my lower back or hips.
  • I had massive joint pain in my feet and hands during my last flare which my gastro contributed was due to uc
  • Sometimes the pain is related to haemorrhoids and wiping my backside so many times.
  • I find the quickest way to heal is to drink Aloe Vera Juice from Lilly of the desert everyday as well as fresh ginger tea for help with inflammation
  • My pain is mild and not usually long lasting fortunately. I find yoga, weight work outs, easy runs and stretching often help. Catching up on sleep never goes to waste either.
  • Ibuprofen is not recommended per the dr. But it is the only thing tolerable.
  • My pain only happens right before I rush or the restroom. I have about 4-10 seconds before it is an explosion. If I haven’t made it to the bathroom by then a shower and change of clothes is next.
  • What has worked for me;
    1. Went gluten free. Reduces symptoms 60%
    2. Go to good acupuncturist. Reduces symptoms 20% and cut down meds (Llialda) significantly. Much better recovery from flares.
    3. Started SCD diet especially first 4 day start up. DO IT! This changes the bacteria balance in your body. Now I make my own yogurt once a week. Greatly reduced or eliminated sugar. Sugar feeds bad bacteria. Starve out the bad bacteria and replace the bad bacteria with good bacteria with the home made yogurt.
    4. Went to naturopath. Did a bio energetic assessment. It was suggested I take various tinctures to aid the body in detoxification. I was encouraged to keep a very low carb diet,and to eat organically as much as possible. Its easy to do and it’s almost a game. I was encouraged to start juicing, which I have not done. Juicing properly is supposed to help in proper absorption of nutrients.All of theses things together have made me 98% symptom free. The 2% is because I am so aware and on guard. I have not had a flare in 3 months. My bathroom habits are now almost normal. My stools are now normal. I just might have to go to the bathroom twice in the morning. That’s it. Do it all . Try it all. I am the best I have been in 5 years.
  • morphine works the best….but we all know that is really hard to get
  • If belly pain during a flare up I use a heating pad all the time & stinking Icy Hot type creams. During times of remission I have arthritis type pain in my shoulder/arm at night sometimes and again use the heating bag or stinky cream. SOmetimes I will take ES Tylenol or drink Turmeric tea. Seems to help.
  • I think rest, drinking water and eating small amounts to let your colon rest and therefore ease the pain helps.
  • Protonic, benzyl helps with my stomach pain
  • I don’t take medication for UC pain for two reasons. 1. Any pain medication is bad for UC. 2. Although pain can be very intense it usually comes in spurts and passes quickly.
  • Sometimes, despite everything you do, you will have pain. Just try to stick close to the foods that don’t give you grief, take your meds and don’t be afraid to take the day off and rest. The SCD diet made a huge difference for me. If I cheat, I will have a flare, although they don’t last as long these days.
  • ALL nsaid type pain relievers aggravate UC so I no longer take them unless absolutely necessary. That includes ibuprofen, tylenol and especially aspirin. AND if you have a cold DO NOT TAKE take Sudafed (suphedrine, not PE). It will bring on a flare.
  • If you live in a state that has legalized marijuana for medical purposes, I would try some the edible choices.
  • May the force be with you, you are not alone.
  • I don’t take pain medications but will take pepto bismal to help with the cramping. peppermint tea has also been really helpful in alleviating cramping short term.
  • Add hot water in a plastic container (specific for holding water) wrap with towel and put it on my tommy area. It works
  • Listen to your body. If you’re feeling pain, relax. Don’t push yourself. Sit down and drink some tea, read a book, listen to some soothing music.
  • It is so important for me to keep my stress level down. I feel it immediately if I am worried or bothered by something.I also found being outdoors is relaxing, even just to sit for 15-20 minutes each day in the shade with a cold drink. It definitely brings up my energy level and mood.My doctor has added 2000mg Vitamin D3 to my daily intake. If you are tired all the time, moody, and just lethargic it could be your D level is way too low, as was mine. UC’ers tend to stay indoors much more then others. You will definitely see the difference when you get this regulated.
  • I am trying qi gung to relax and hopefully give me a sense of overall better health. I just started and can say that in terms of minimizing stress – it’s great! Acupressure, acupuncture and Chinese/Eastern meds seem to help as well.My pain can either be joint and body aches as well as stomach pain.
  • I don’t take very much pain medication but I am thankful to have the Rx strength when needed. It does affect other things so always try to use it sparingly.
  • I still have a pain with an unknown cause that I had in my left side the last time I had a severe flare up. It was so bad that it hurt to breathe and I prayed the pain would make me pass out so I could have some relief. I went to the emergency room and they did a CT scan but it showed nothing so they said it was because of my UC. I went to my UC doctor the next day and he said there’s no way it could be caused by that but he gave me an anti-inflammatory and pain meds and eventually it stopped hurting as my UC cleared up and I went back into remission. I still have a small pain every now and then but I have no clue what it was.
  • Taking NSAIDS can aggravate colitis symptoms, so take them sparingly.
  • Turmeric tea has helped me immensely, 1t spoon once a day. Amazing results after 3 weeks.
  • My ulcerative colitis is mild to moderate. I don’t always have pain during a flare but when it happens, it’s a very dull ache on the left side. Fortunately it’s not constant and rest seems to relieve it for awhile. Also changing position helps. I shy away from pain meds to avoid further irritaion, unless it’s unbearable.
  • When I got bad pain it was generally a result of the food I ate. I am a very restricted(fussy) eater even before I got UC so my eating habits are extremely bazar the by most people’s standards. So when I have a problem I can generally pinpoint what it was that initiated the problem.
  • I have noticed my joint and muscle pain likes to travel all around. Lately it has been in my low back and hips. I’m so tired of feeling crappy all the time.
  • Change your diet, for me none of the medicines are working and I am not going on anymore immune suppressors cause they are just poison. I have been ten months this bout of colitis, my third since last year since I have been diagnosed . This one being the longest ten months and and not able to be controlled with the medicines.. so about a week and a half ago I started to eat the scd diet and am feeling way better. I am going to get better the natural way, I refuse to take any more strong medicines cause the side affects just make me worse and I get sick with other things thanks to them.
    Take vitamin and mineral complex, change your diet and take probiotics. Ginger tablets for gasy tummies… and I am also doing a cleanse…oregano capsules 2 weeks to kill candida and bacterias. Also Tincture of black walnut and wormwood.
    I believe that I am riddled with bad bacteria overgrowth and also candida because I have had candida twice , plus nail fungus, plus excema in my head and face. So on top of the diet I am doing a cleanse to kill off those nasties. Then once I have cleaned out my intestines then repopulate it with good bacterias… thats my idea on how to speed up the curing of the intestinal walls and ulcers hopefully with time, and the diet of course…
    I just started making my yogurt and now will give the yogurt a try am very excited hahaha, first time I made yogurt in my life !! Looks good, am looking forward to eating all those billions of healthy bacterias. I am totally convinced I will get better this way I feel so much better honestly.
    Also keep positive , I think that also thinking positive really helps to heal. I am so over the moon to have started the diet and see results in days and am feeling better it has brought up my spirits and I am so positive now. I think it is really important to stay positive and don’t give up, don’t listen to doctors who tell you don’t go on the internet …. If I hadn’t researched so much I wouldn’t be getting better. Cause my doctor only believes in medicines. Don’t give up. I have had it bad and got really depressed but then thats not me, so got me back and said to myself right , your not going to get better waiting for the specialist… so I didn’t stop studying all I could about everything possibly written about colitis. Do stuff that makes you happy and smile, joke and make the most of your good moments… remember the only way is up baby!!!
  • Be aware that some pain medication can have side effects that are similar to the symptoms of UC.
  • Joint pain is constant and not much helps when it gets real bad. Pennsaid and regular OTC Aspercream work when the pain is less severe. The HC Praxoxine works great for anal itching and soreness but should not use it regularly.
  • Getting your UC under control is pry the best bet at pain control, however, sometimes, random pain is inevitable. During a flare – the pain can be completely uncontrollable. You do the best you can just to maintain a somewhat normal lifestyle!
  • avoid heavy consumption of alcohol & tobacco & try to live a stress free life.over stress is the major cause of UC. maintain a healthy diet & avoid the food which causes remission & increases pain.
  • Milk of magnesia
  • I really haven’t really had pain with my UC. More discomfort during a flare. Of course really watch my diet, watch my stress level, get exercise and try to get a good nights sleep.
  • Was on remiked infusion for 2 years and it started working right away. I am on imuran tablets now with the pentaza too, and doing ok this past 2 years.
  • The Oxycodone is prescribed for a low back condition , but it can help with UC pain.
  • I am very carful as regards to what I eat all the time, but as yet I still get very sharp abdominal pain 4 to 5 times a week and I’m in and out the bathroom 6 to 8 times. This hsppenes always in the morning which leaves me strengthless and I have to lay down in bed.
  • I use high potency probiotics, digestive enzymes and HCA to manage my colitis.Adam if you hear anything new lets us know, I’m currently working on my diet. your diet has helped. THANKS. :)
  • Related problems I’ve had that have linked with UC are: migraines, joint pain, breathing problems, pleurisy, pericarditis, inflamed bleeding vessels in my eye
  • I try to keep active if it’s just walking.
  • Indica THC
  • Don’t feel guilty about resting!
  • Don’t stress and Think positive ?
  • The pain is typically associated with stomach cramping or urgency. I also frequently experience what I call “burny butthole feeling” where it feels like my rectum is on fire. :) But I try to manage it as I do with all of my symptoms: lifestyle management of diet, sleep and stress. Best of luck to all you UC’ers out there!!
  • Lorcet and its family do not help. Sometimes gabapentin does at it blocks the nerve transmitters. It is mostly for joint pain.Tramadol can get you thru work but nothing else.Hyoscyamine will put you to sleep if you take 2 which I do.I have had this for over 40 years. Some weeks are good, others awful.
  • I wish I knew what to do, I have been having a terrible time for almost a month now. Between the leg cramps, the sore bottom, lower leg cramps it is hard to concentrate some time.
  • I have learnt to manage stress at work, try to get a little time to myself. I find exercise and hydro pool really effective. Probiotic and Aloe Vera juice have helped immensely
  • I’m going in for my takedown surgery for my J pouch next week. If I could go back in time I wouldn’t have waited 5 years to do this. I feel like a new man and haven’t taken any pain meds for over a month. The 3 months with the ileostomy is a piece of cake compared to the pain/humiliation of UC. I urge anybody considering a j pouch to really research it, the thought of it is scarier then it really is. You owe to yourself and family to atleast consider it.
  • I have been on remicade for 1 1/2 years . And feel wonderful ?
  • Back pain heralds a flare for me – so it tells me to immediately rest; relax/meditate; take a pain med; have a relaxing bath; reduce my diet to very simple foods on the Specific Carbohydrate Diet – ones I can tolerate like chicken broth, eggs, SCD yoghurt. Within a day on the SCDiet I will be back to health!! Also the associate inflammation n pain of joints has disappeared on this diet!!
  • You never know if this flare is the WORST or if there is another one coming behind it that will be 10xs worse. If you can figure out how to manage the pain wo the meds you stand a better chance of making it through the next flare if it truly is worse than this one. Just one person’s opinion though.
  • Pain goes instantly on intake of Prednisone. Only use ibuprofen, liquid capsules most effective, if your stomach can tolerate it.
  • I don’t know why I have this terrible disease but the last 18 months have been absolutely horrible, I feel like my life is over
  • Hot water bottle helps with painful trapped wind and/or that dull ache you get
  • If you live in a state that allows medical marijuana I hear it works friggen wonders for uc pain
  • I take ibuprofen because nothing else works. Ever.



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1 thought on “Colitis Pain Survey Q-6”

  1. I’ve had colitis now for five years. I am on pantasa 3 pills twice a day. Also take a probiotic 1 tablet twice a day. To get rid of the joint pain take Curcumine X2000 it is a highly condenced tummeric and it works vary well. It is made by Bell and don’t be discouraged it may take a month or so to work. I know am down to only 2 pills per day and have zero joint pain. I also take 2 omeg3 tablets daily. For the last year no blood and no painful joints.

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