I was just diagnossed with Crohn's disease and find myself very scared and i feel very alone , i hate what this sickness has done to me . I feel like i am missing out on so much , i feel like i am sitting looking out the window just watching my life go by , the pain is unbearable does it ever get any better ?
Hi, sbeaches. Welcome.
Glad you found supportgroups.com.
You are not alone.
My friend has Cronhn's and keeps her doctor's appointment and watches what she eats. When we're together, I order the same thing so she doesn't feel different.
You are stronger than you know.
You CAN handle this.
I like www.webmd.com as a good source of info. I bet your doctor has brochures for info.
It will help when you talk to someone else who has this.
Wishing you all the best.
Hi sbeaches: I am a nursing student and a mother of a daughter with cronhn's disease. I am joining this group for two reasons a project assignment and an illness close to my heart. There is a very helpful interactive website called ccfa.org, Crohn's and Ulcerative colitis foundation of America. My daughter was first diagnosed when she was 11 years old and has had some pretty serious " flare ups" until we were able to find the right medicine for her body chemistry, unfortunatly, sometimes this takes longer than we like it to. My daughter is now 17 and paricipating in school, friends and work. If you would like to chat I am always online.
Always spend a few minutes each day with a smile
Dot
beaches - you are not alone. I have had Crohn's since I was 21 and now am 53. I know it is a horrible illness and not many people talk about it. Not like Cancer or diabetes or the common diseases you hear about all the time. I am guessing that you are young, it seems to hit people at a younger age. Make sure you have doctors that are the best possible. Don't give up and don't be afraid to share with people. Find a support group - a live in person support group, if possible. No one had even heard of Crohn's when I was diagnosed and I never searched out that group, but at that time I had a very close church family. I hope you improve and your pain is eased. Don't let this take over your life - take risks and go out there and live. There will be times of embarrassment and difficulty, but there are always are those times with life. No matter what disease we have or don't have. I hope for you the best.
I have the most similar (ulcerative colitis) and there is not even a support group :( So we have to stick together I think. I got it when I was 12, and it's the worst thing ever when flare ups are bad, so much pain!!! When you are stressed... accidents, for a 12 years old girl it was beyond humiliation. I got so much pain I stopped eating. I still go through times when I stop eating, and then have other issues, so try to keep eating healing foods like those leafy greens. I did go many many years without incident, or without needing daily medication, that was wonderful. It can get so much better, so hold on.
Hello sbeaches. I was diagnosed a little over a year ago. Are you on Remicaide, Cimzia, or anything like that?
TO NATURE: you seem like youre an amazimg friend. Im glad to know there are people like you out there.
Hi! Wishing everyone all the best.
Thanks for the kind words. I feel we’re all here for each other. My friend likes Remicaide and has been on it for several years. That, and watching what she eats has helped her.
Prayers to all.
I have had Crohn's since 1985. I'm 45 now and- after too many years without insurance- just started taking Humira. It's too soon to tell if it's working, but I did have a two-year remission with Remicade (which is in the same class of drugs). I used to have to go to the ER to get any treatment at all and was almost always hospitalized for at least a week. In my experience the worst treatment was Prednisone ( a corticosteroid), which is basically a stress hormone. It literally feels like you're being chased by a saber-toothed tiger all day, since it triggers the same fight-or-flight reaction in your brain as our most ancient dangers once did. I won't lie to you: if you do not have good health insurance your lifestyle and options will be severely restricted IN EVERY WAY. However, if you are covered your disease can be managed by a good gastroenterologist- to an extent. They say some people go into permanent remission; I've yet to meet such a person. The reality is that your life will now be to some degree limited by your illness. You MUST always know where the nearest public restroom is AND whether or not it's usually locked AND where the key is AND how much time your body will give you to get to it. During flare-ups you MUST keep extra clothes handy (if necessary by wearing them); having a sealed plastic bag helps, too. Try not to go out in extremely hot weather if you can avoid it. If you do so, DON'T EAT ANYTHING until you get home. If you have to eat in public during flare-ups and aren't close to an easily accessed restroom, choose the plainest, blandest, least greasy (or spicy or fiber-y) food you can (may I suggest the skinless, grilled chicken breast?).Choose your companions wisely. If your bowels betray you (AND THEY WILL) you'll be glad you did. Some doctors will suggest surgery far too soon. Decline, and get a second opinion immediately. No matter what they tell you, all reputable studies indicate that a colon resectioning will not cure you (see CCFA.org).Get as much rest as possible because your body cannot absorb nutrients as well as a healthy one can. Supplement your diet with the appropriate vitamins, minerals, and electrolytes (ask your GI ). I could go on like this all day, but above all don't give up: you CAN find the right doctors, treatments, and emotional support. One more thing: be very careful about when and how you discuss your disease with new friends, lovers, and even family members. There are people to whom you should NEVER give detailed information about your symptoms. You will find it all-too-easy to figure out who they are, and (trust me) they are not worth your time or your energy. I wish you well.
Hi, Ghostlizard. What great advice. One of my best friends has Crohn’s. It’s so nice of you to share all this helpful info.
Wishing you all the best!
Hello ,
I'm Fourteen && Was Diagnosed In January With Severe Crohns.
Its Not Fun At All . Because Of It I Now Have To Be Home schooled . I Was Stuck At Home All Day , Nowhere To Go , Nothing To do . My Friends Had Their Own Lives To Live , They Couldnt Wait For Me .
Crohns Is A Life-Long Condition && Your Symptoms May Decrease From Time To Time , Then Flare Up Again .
I Get These Absolutly Unberable Severe Abdominal Pains , Cold Sweats , Fatigue , Nausea , Bloating , Dizziness , Diahhrea . I've Passed Out On The Toilet Before , Hit My Head && Suffored From A Concussion . I Was Put On Bentyl For IBS And Partial Crohns . Doesnt Help With The Pain At All . Also - Start Eating Foods WITHOUT Gluten - It Helps . && Cut Out The Foods That Upset Your Stomach . Mine For example Are : Spicy Foods [ Mexican , Indian , Etc ] Chinese Food , && Deep Fried / Fast Food .
Once You Cut Those Out - You may notice Your Symptoms Decrease A Bit .
** CLEAR LIQUIDS !! Especially Water - Definatly During Your 'Episodes' . Clear Liquids Instead Of coffee Or Sodaa - Help Also .
Stress Is A Trigger For Mee && When I Get Nervous Or Scared - Then I Get Horrible Pains .
I Meditate Twice A Day - Try It , take Some deep Breaths && Clear Your Mind .
I Hopee This Helpss . Especially Since I Feel Your Pain /:
Hopee All Is Well !
I'm Always Heree For Youu (:
I feel for you AdorableSkylar. I can't imagine what high school would've been like with IBD-or maybe I can: it would've really sucked. Teenagers can be very cruel; I suggest that you choose your friends very carefully, and tell only a select few about your illness. Most people's eyes glaze over for a minute when you tell them. There is little awareness of Crohn's, so usually I just tell people "it's a really bad stomach thing." I hope you go into remission soon, and stay that way for a long time. Your right about the clear liquids, but mostly it's just not eating for a few days that works for me..although that has obvious drawbacks (for one thing, it's very hard to sleep when you haven't eaten for 48 or 72 hours). At the hospital, that seems to be the main thing: resting the bowel with IV nutrients and a clear liquid diet. As for the pain, the only thing that helped me even a little was Dilaudid, but it also makes you EXTREMELY nauseated, so I only take it for short periods. I really hope you feel better. You sound like a wonderful person and I hate to see good people get bad news. Be well.
OT - Preparing for a hurricane
So good to have a plan and a to go bag ready and handy.
They say it's good to have enough supplies to last for 3 days like you're camping in your own home.
With flooding here, the gas pumps don't work and neither do the ATM's.
I fill every pitcher and bucket with water. Even the bathtub (sealed with petroleumjelly - can use that water for the toilet, when there's no running water.
Some get their favorite snacks - not the time to always count calories - comfort food for a day for 2 is ok in this case.
Bread, too! Peanut butter, crackers, bottled tea, etc.
Manual can opener. Cereals. Granola bars, shelf stable foods.
Keep important papers in sealed ziplock bags. Bring ID, insurance papers, credit cards, cash.
I even buy tuna, shelf stable pudding cups, sodas (in case the water is not drinkable for a few days), hubby will eat Spam, kids like pretzels & chex mix, bottle of juice, canned fruit & veggies.
I don't hoard bottle water, but do get enough for 3 days.
Pets - with canned food, that way they are getting some fluids, in case they don't drink when evacuated.
Bring in potted plants and patio furniture. Could become projectiles.
Please take care. Better to be safe than sorry. Sooo hard to get supplies after the storm, when everyone needs the same thing!
Prayers for all those on the eastern part of the U.S.
Hello...I am a mother of a 14year old daughter that was diagnosed with crohns this summer. It has been a long road...she was on prefixing but is now off and being treated with remicade the problem is she is experiencing some hair loss and is freaking out over this. She started her freshman year of high school with moon face from the predisone and now this....does anyone have any help with this... I am at my wits end and just so emotional for her.
Wow the support this group offers is wonderful. I feel better just reading all the encouraging posts.
I have been struggling with Crohns for a few years. Entocort did a pretty good job maintaining the status quo. However my insurance company "suggested" that I try another drug. After discussions with my dr I chose azathioprene(sp?). I've been on it for 6 weeks and it seems my Crohns is worse! I've never had accidents that required a complete change of clothes until this past week when I had 3!
To complicate matters, I am also being treated for diabetes and high blood pressure. This is making any diet impossible to follow. I find myself skipping meals to avoid bathroom issues only to have my sugar drop.
The ccfa.org web site has not told me anything I don't already know. So I would like to ask this group some questions...
Is there anyone out there with other medical issues and how are you dealing with all of them?
Have you tried the BRAT diet? (bananas,rice,apple sauce, toast) I'm currently trying a bowl of white rice every other day.
How did you choose your medication? Are you experiencing any side effects? Are they tolerable?
If you eliminated any foods prior to your current meds, have you been able to add any back? I really hate giving up milk and ice cream!
Do you take any supplements or vitamins?
Is joint pain common with Crohns?
I apologize for the length. I'm happy to have someone to talk to who understands and I apperciate any comments and opinions.
Azathioprine didn’t work for me, either. I did well on Remicade for a year or so, but had to stop taking it when I lost my job and insurance. I discovered that there is a Patient Assisstance Progaram (PAP) available to help pay for most Crohn’s meds, including Remicade. I am now (5 years later) officially disabled and on Medicaid. My doctor had to fight them just to get me on Pentasa (which didn’t work), and then he fought them even harder to get me on Humira (which is working- so far).The accidents never get any easier to handle, but I find that wearing shorts over your underwear (and under your pants) helps, as does wearing black from the waist down. Keep a change of clothes with you during flare-ups, and some flushable wipes. Tell people before meetings or functions that you may have to leave unexpectedly and without warning due to “ill health.” Always apologize for leaving early, but don’t feel that you need to impart any details to those you don’t feel comfortable sharing your medical history with (good friends usually don’t ask, and those who ask for specifics usually aren’t good friends). Most of all, if your illness ever prevents or impedes you from success in any endeavor, remember that our true occupation is to become good people, and a good person is not defined by income or recognition but by the ones whose lives you’ve improved… even if only in the smallest way. As for side effects from Humira… none to speak of. The foods I’ve had to eliminate from my diet during flares are tolerable now, but only in very small portions. Try soy or almond milk to substitute for dairy. I don’t get enough dairy products, either, so I do take Calcium/Vitamin D, as well as Iron, B-12 injections, and Folic Acid. I also use Ensure when I can’t eat, and take Imodium everywhere, every day. If you take enough you won’t have an accident, but if you take too much you can develop a blockage ( I have found this danger to be over-stated, however; when I was still able to work during flares I took as much as 90 mg./day (15 2mg. caplets with each meal!) and never experienced any complications worse than severe constipation (which is no picnic, but I’m sure you’ll agree is far preferable to constant diarrhea). Joint pain is common, as are abdominal pain, skin rashes and scaling, and (worst of all) fistulas. As for the BRAT diet, I’ve never known anyone who tried it. What does your gastroenterologist think of it? Can you really get complete nutrition eating only the same four foods every day, and how long can one keep that up realistically anyway? I think the lack of protein would make me pine for death(or at least…beef). Hope that helps. Stay strong and learn to keep a straight face no matter what your bowels do to you…diarrhea cannot displace dignity unless you let it.
You are diffinetly not alone. I have been fighting this for twenty years and even though I have faced many scary times what I can tell yu as a new person with Crohn's the medications are better the hope of a cure is better and most of all the support groups are better. I have had many health battles with this illness. but in all of it I have always held on to the better tomorrow and believe me when I say they always come.
I know how u feel u will have good days and bad crohns affects so many differant things to your body but u learn to live with life goes on and u can't let it win sometimes I feel like nobody understands the pain and mental things u go through but I just tell myself I can do this and I will I have had many flairs but now I'm on pentasa which really helps me just remember stay strong
I'm also new to this disease and feel just like you lost and scared. They have me on so many new meds idk which way I'm going. As of now I'm unable to keep food down or live a normal life. I pray that a cure will come soon to help us all. Thank you to all that support us new ppl here. Have a beautiful day
Here is a prayer given to us for help and healing, if it helps and you ever need help getting through the day:
Thy name is my healing, O my God, and remembrance of Thee is my remedy. Nearness to Thee is my hope, and love for Thee is my companion. Thy mercy to me is my healing and my succor in both this world and the world to come. Thou, verily, art the All-Bountiful, the All-Knowing, the All-Wise.
Bahá’u’lláh
Oh yes it does get better, just not quickly. I have had crohn's since 2006. I have tried many different NATURAL remedies as I dont believe in pills. Or anything that could possibly give me TB or maybe kill me.
So far I have noted the following, Cannibis is awesome. No doubt. a) It will not kill you. b) You can eat, and not feel sick, and absorb your nutrients. c) It helps your mood, I'm not saying walk around high(please don't) but just medicate if you want, eat right(stay away from seedy and fibery foods) and exercise a bit, and you'll have fewer flare ups(another thing, there are usually triggers of a flare up.) This is auto immune, so try and avoid the following, Bruising, scabs or scars, colds, flues, etc... It's like this, in a healthy person, the immune system turns on when it needs to(sickness, bruising scabbing etc..) Fights off the intruders(bacteria, viruses, etc..) Then turns off again, and all is well. In us however, the immune systen turns on as needed, BUT remains on. What could they possibly be fighting off? What do you think the most Foreign things we put into our bodies every day? FOOD. To the immune system of someone with crohn's FOOD is the enemy, and your immune system believes you are sick, and thus presents the sick symptoms you have, while all the while fighting off your food. During that time, if you are blood tested, you will be told that your WBC(white blood cells) count is high, which is a sign of infection. The infection however is your immune system destroying your food. Your symptoms will usually include, abdominal cramps, nausea(lots of that) maybe vomiting, if you are unable to prevent it, frequent loose"numero deux's" and plenty of weakness.
It's certainly not a fun thing to have, but really manageable. If you are not into Cannibis(btw you cant use cannibis all year, because maybe once or twice a year, for a period of two weeks to a month each time, Your body will make you think that the cannibis is making you sick. Actually what happens, is that at this point, without cannibis, you will have no symtoms, hence REMISSION. but that only lasts so long, before it comes back(There is no known cure for crohn's) at which point you would want to begin your cannibis regime again. Surgery doesn't work forever, but doctors(not all but most) don't want you to know this, because everytime you have a bowel resection(where they cut out the diseased portion of your colon) Crohn's always comes back, and you get more surgery, and they get more money. What do you get in the end? Certainly not better. In fact, you will be much worse. What happens when you have no more bowel to resection? No more bowell, and no more normality, instead you get a colostomy bag. Not a good change, if I say so myself.
Well I think I have babbled on long enough, in this particular post, I know I was just a bit brutal with my honesty on the subject, but I don't want anyone, to go through anything they don't have to, and I don't want anyone, to not know what happens either. If you dont like cannibis, there are some pretty effective ways of TEMPORARILY ridding yourself of the symptoms. Temporary as in minutes or hours. Cannibis is more effective, but if you would like to know of these Remedies, just ask.