May 16, 2017

Crohn’s Disease

Here’s a free collection of resources about Crohn’s Disease- Crohn’s Disease blogs, videos, support groups, first-hand experiences and advice from people who have Crohn’s Disease, etc.

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Crohn’s Disease Blogs

Here’s a list of Crohn’s Disease blogs- blogs written by people with Crohn’s Disease, or about Crohn’s Disease.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Vern’s Crohn’s Disease Blog crohns-leavingtheseatdown.blogspot.com 2017
Jenni’s Guts jennisguts.blogspot.com 2017
Uncover Ostomy uncoverostomy.org 2017
The Lady is a Tramp theladyisatramp.net 2017
The Stolen Colon stolencolon.com 2017
Crohn’s & Colitis UK crohnsandcolitis.org.uk 2017
Crohnie Travels crohnietravels.blogspot.com 2017
Crohn’s And Colitis Canada crohnsandcolitis.ca 2017
Crohn’s Disease .com crohnsdisease.com 2017
Video Blogs hospitalpatient.com 2017

 

Crohn’s Disease Support Groups

Crohn’s Disease Support Groups On Facebook

  1. Ulcerative Colitis and Crohn’s Disease Group (12464 members)
  2. Crohn’s Disease & Culcerative Colitis Support UK (11567 members)
  3. Crohn’s Disease, Ulcerative Colitis, Celiacs, and any IBD/IBS Awareness (5912 members)
  4. Crohn’s Disease, Ulcerative Colitis & IBD (5837 members)
  5. Crohn’s Disease Community (2856 members)
  6. Crohn’s Disease Awareness (2825 members)
  7. Crohn’s Disease Sucks (2712 members)
  8. Ulcerative Colitis Crohn’s Disease Support Group (2269 members)
  9. Crohn’s Disease Australia (1754 members)
  10. Crohn’s Disease Support Network (1528 members)
  11. Crohn’s Disease Support Group (Ladies Only) (920 members)
  12. S.A. IBD Support Group – Crohns Disease & Ulcerative Colitis (590 members)

Other Crohn’s Disease Support Groups And Forums

  1. Crohn’s Disease Forum (431,622 members, 931,929 posts)

 

Crohn’s Disease Survey

We’re surveying people about their experiences with Crohn’s Disease. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with Crohn’s Disease**


Crohn’s Disease Symptoms

What symptoms have you experienced?

  • All Crohn’s symptoms. (Mohammed S., 20 years old)
  • Bowel noises, pain, diarrhea, nausea, fatigue. (Brittany, 21 years old)
  • Diarrhea, upper and lower abdominal pain. (Carrie, 27 years old)
  • Diarrhea, pain, nausea, joint pain, liver disease. (Leah, 30 years old)
  • Urgency, pain in all four quadrants off and on, blood and mucous in my stool, joint pain, interrupted sleep, exhaustion, anemia, fatigue, ulcers in mouth and throat. (Tiffany, 33 years old)
  • Nausea, exhaustion, fistulas, kidney stones, gall bladder stones. (Megan, 34 years old)
  • Diarrhea, stomach pains. (Kelly S., 35 years old)
  • Pain, diarrhea, fatigue, achiness, depression. (Misty, 37 years old)
  • Bloating, pain, occlusions, weight loss, fatigue, joint pain. (Lorena S., 38 years old)
  • Pain and burning. (Russ B., 44 years old)
  • Rectal bleeding, fevers, blurry eyes, vomiting, stomach pains, mouth sores, diahrrea. (Darlene, 47 years old)
  • Gut pain, joint pain, eye inflammation, constipation, diarrhea, abdominal bloating, fatigue, depression. (Kelly B., 49 years old)
  • Cramping, diarrhea, fatigue, joint pain. (Laura, 53 years old)
  • Pain, fever, inflammation, vomiting, diarrhea, gas, nausea, malabsorption. (Diane M., 60 years old)
  • Pain, diarrhea, cramping. (Teri, 62 years old)
  • Abdominal pain, nausea, vomiting acid reflux, constipation, anxiety. (Patti M., 64 years old)

Crohn’s Disease Facts

What are some facts you’ve learned about Crohn’s Disease?

  • It’s not easy to cure. (Mohammed S., 20 years old)
  • Its a disease not many people know about as it’s one that can’t be seen. (Brittany, 21 years old)
  • What it is, and steps to help manage it. (Carrie, 27 years old)
  • No cure, affects all parts of your body. (Leah, 30 years old)
  • It effects 1/150 Canadians, there are many theories as to causes, but nothing 100% definitive. There is a wide range of treatments, it can be debilitating, there are many extra-intestinal manifestations. It is often misdiagnosed as IBS, there is no known cure. (Tiffany, 33 years old)
  • Lifetime disease, nothing is the same for any one person. The meds or problems caused by crohns are more deadly than crohns itself. (Megan, 34 years old)
  • Stress is bad. (Kelly S., 35 years old)
  • I’ve learned that no two Crohn’s patients are the same. I’ve learned that it may be genetic AND environmentally provoked. (Misty, 37 years old)
  • It’s an autoimmune disease. (Lorena S., 38 years old)
  • How it progresses, diet and effects on body including other diseases that come along with it. (Russ B., 44 years old)
  • Crohns has no cure. (Darlene, 47 years old)
  • Smoking increased my risk of developing Crohn’s disease. Crohn’s disease is not “just” a poop problem. (Kelly B., 49 years old)
  • Diet, stress, trigger foods- all of it matters until it doesn’t. (Diane M., 60 years old)
  • Find out your food triggers, and stay away from them. (Teri, 62 years old)
  • A challenge to manage docs, still not sure how to treat it, or to stop it coming back after surgery, strong medications used to treat it with many side effects. (Patti M., 64 years old)

Crohn’s Disease Pain Management

What are effective ways to manage your pain (if applicable)?

  • Pain killers, certain yoga position, a substance for muscle cramps. (Mohammed S., 20 years old)
  • Just get on with it. (Brittany, 21 years old)
  • Pain medicine, steriods, heating pad, hot showers, laying down. (Carrie, 27 years old)
  • Pain pills, heating pad. (Leah, 30 years old)
  • Soaking in the tub, Tramacet, a heat pack. (Tiffany, 33 years old)
  • CBD oil. (Megan, 34 years old)
  • Prayer, maintaining a strict diet, yoga, heat, occasional pain meds. (Misty, 37 years old)
  • Ibuprofen, 600mg. (Lorena S., 38 years old)
  • Remicaid, humira, surgery. (Russ B., 44 years old)
  • Tylenol. (Darlene, 47 years old)
  • Hot compress/heating pads, rest, Boswellia, cortisone injections. (Kelly B., 49 years old)
  • Diet, medicine. (Laura, 53 years old)
  • It’s under control for now, I’m on Remicade, but percocet works until I need dilaudid. (Diane M., 60 years old)
  • OTC Tylenol, doctor prescribed pain medicine, heat pad. (Teri, 62 years old)
  • Opiates used to help becoming tolerant to them, surgery stops pain, but a drastic solution. (Patti M., 64 years old)

Crohn’s Disease Difficulties

What are difficult aspects of living with Crohn’s Disease?

  • Not having a guaranteed health, and not being able to study in university, and have life going on a certain path. (Mohammed S., 20 years old)
  • Trying to be a normal 21 year old. Or when you can’t even go on a proper date because your tummy plays up. (Brittany, 21 years old)
  • Not being to do the things I used to be able to do. Depression from being in pain. (Carrie, 27 years old)
  • Bowel control. (Leah, 30 years old)
  • Trying to maintain health enough to work, or maintain relationships. Pain, getting into remission, having enough energy to get everything you want down. (Tiffany, 33 years old)
  • Getting worn down easily, always having to know where the nearest bathroom is. I can’t eat if driving a long distance. (Megan, 34 years old)
  • Not being able to go anywhere. (Kelly S., 35 years old)
  • The fear and fatigue are ever-present. The pain. The unknown. You always wonder if you’re going to have a flare up. You must always know where the bathroom is. It’s hard to be social. Dietary restrictions make it difficult to eat out. (Misty, 37 years old)
  • Fatigue, depression. (Lorena S., 38 years old)
  • Fatigue, pain and other diseases. (Russ B., 44 years old)
  • Watching what I eat. (Darlene, 47 years old)
  • Constant overwhelming fatigue, frequent trips to the bathroom, people’s perceptions (i.e.; you look good, how can you be sick). (Kelly B., 49 years old)
  • Making plans ahead of time, then being unable to do them. (Laura, 53 years old)
  • Finding bathrooms, not being able to be far from a bathroom, cutting back on outside activities or physical ones, since exercise can trigger movements. (Diane M., 60 years old)
  • It’s a lonely disease and isolating. People can’t see you are sick, so they assume it’s just not that bad. (Teri, 62 years old)
  • Pain, fatigue, missing out on normal life. (Patti M., 64 years old)

Crohn’s Disease Advice

What words of encouragement/advice can you share with others who have Crohn’s Disease?

  • It’ll pass, others have it worse. (Mohammed S., 20 years old)
  • As hard as it is, and every day is a struggle, don’t give up. Rely on your friends and family for support to help you through the tough times. (Brittany, 21 years old)
  • Follow through with what your doctor tells you, talk to others with the disease, never give up. If you think something is wrong, keep pushing until you get results. (Leah, 30 years old)
  • You are not alone, and don’t give up. (Tiffany, 33 years old)
  • You can fight through it, you will have your lows, but it’s worth the fight for the good moments. (Megan, 34 years old)
  • Don’t give up. Take it one day at a time. PRAY for a cure and don’t stop. (Misty, 37 years old)
  • You must take care of yourself. (Lorena S., 38 years old)
  • Treatments progress and get better year after year. You can have a fulfilling life with Crohns. (Russ B., 44 years old)
  • Stay strong, you can do it. Never give up. (Darlene, 47 years old)
  • It doesn’t have to define you. New medications are coming out on a regular basis. (Kelly B., 49 years old)
  • Take one day at a time. Each day can be different than the one before. (Laura, 53 years old)
  • Do not eat before a trip, do not eat before an event. (Diane M., 60 years old)
  • Get a nutritionist, a therapist and a good GI doc. (Teri, 62 years old)
  • Try to keep hopeful, keep looking for good care until you get it. Don’t be afraid to tell docs what’s happening. Don’t be afraid to look for second and third opinions. (Patti M., 64 years old)

Crohn’s Disease Diet and Exercise

What’s been your experience with diet and exercise?

  • I had problems with many diets, including SCD. Exercise sometimes helps. (Mohammed S., 20 years old)
  • I have a physical job (app diesel fitter) and some days I really struggle with my fatigue. And diet, I’m still working on that one, as one day I can eat something and the next I can’t. (Brittany, 21 years old)
  • Non-existent. (Carrie, 27 years old)
  • Hard when in flare. (Leah, 30 years old)
  • I exercise when I can, and feel better when I do. I stick to low fiber and low FODMAP foods. (Tiffany, 33 years old)
  • Not a lot has helped either way. The only diet thing I don’t tolerate is processed or fast food. (Megan, 34 years old)
  • I follow the Specific Carbohydrate Diet based on the book Breaking the Vicious Cycle by Elaine Gottschall. It has turned my life around. I also do yoga. (Misty, 37 years old)
  • It helps a lot, in combination with the drugs. (Lorena S., 38 years old)
  • Too tired and pain to exercise. Balancing diet is hard because I have Crohns and IBS. (Russ B., 44 years old)
  • Eat healthy. (Darlene, 47 years old)
  • Knowing my food triggers helps prevent discomfort. Gluten free and SCD work for me. Exercise when I’m in remission is amazing- physically and mentally. Exercising when I’m flaring is almost impossible, secondary to pain and fatigue. (Kelly B., 49 years old)
  • Both help manage symptoms. (Laura, 53 years old)
  • I eat cleaner, and it only impacts some exercise. (Diane M., 60 years old)
  • I am still working on my diet and have not started to exercise. But I hear yoga is easy, but good. (Teri, 62 years old)
  • I have to be cautious what I eat and how much when in pain, it’s hard to keep up nutrition. I’m too fatigued or in too much pain to exercise. (Patti M., 64 years old)

Crohn’s Disease Treatments

What’s been your experience with treatments (medication, surgery, etc.)?

  • Remicade is not working very well, planning to add azathioprine soon alongside it. I was aza. before, but stopped​ it after six months. (Mohammed S., 20 years old)
  • Find a good GP and it makes the world of difference. (Brittany, 21 years old)
  • Horrifying. (Carrie, 27 years old)
  • Removal of colon. (Leah, 30 years old)
  • I have failed almost all drugs, Entyvio is my last chance. I’m waiting for a partial colectomy. (Tiffany, 33 years old)
  • Illeostomy, resections, kidney stone surgery, remicade, humira, cimzia, zofran. The ostomy immediately made me feel so much better and instantly my appetite came back. The resection was a rough surgery, but I wanted to at least give it a second chance before I have a permanent ostomy. I definitely don’t have as much energy as I did with the ostomy. Treatment wise I had antibodies to remicade right away, had to go off humira for my surgery, and am currently on cimzia, which seems to be working well. (Megan, 34 years old)
  • I failed Remicade. I have done short stints on Prednisone. I have had one resection surgery and will be trying Stelara next. I am terrified of biologics honestly. (Misty, 37 years old)
  • Weight gain, fatigue. (Lorena S., 38 years old)
  • Humira had me in remission for a few years and it helped with pain. Then remicaid has the Crohns in remission, but my IBS is very painful. Plus it’s not working on my RA or SA. (Russ B., 44 years old)
  • Been on Prednisone and Pentasa since March, it has put me in remission. (Darlene, 47 years old)
  • Surgery (x’s2), remicade, Prednisone, cymzia, sulfazaline, budesonide, pentaza, Humira. Humira weekly injections for about eight years – it brought significant improvements in my quality of life for a long time, but I started developing infections and feeling as bad on medication as I did off of it. I’m currently trying to manage without medication. (Kelly B., 49 years old)
  • Surgery, medication helps with quality of life. I am trying acupuncture- too early to see any difference yet. (Laura, 53 years old)
  • Humira caused pancreatitis, Entyvio caused side effects, now I’m on Remicade. (Diane M., 60 years old)
  • I had a bowel resection. I was afraid at first, but when they took out the diseased area I felt so much better. (Teri, 62 years old)
  • Some good, some bad, some caring people, some medical people don’t care or don’t believe you have severe pain, some are judgmental. (Patti M., 64 years old)

Crohn’s Disease Recommendations

Anything you’d recommend for someone with Crohn’s Disease?

  • Have faith. (Mohammed S., 20 years old)
  • Get private health insurance. (Brittany, 21 years old)
  • Join a support group. (Leah, 30 years old)
  • Build a strong support network, look for local in-person support groups so that you can chat with people who understand. (Tiffany, 33 years old)
  • Trust your gut when you are going to doctors, find one you like and trust. Don’t be afraid to say no if you are not comfortable with the treatment. With any suggested treatment do your research, and ask questions. (Megan, 34 years old)
  • Patience. (Lorena S., 38 years old)
  • Stay positive, exercise, and stay on top of treatment plans. See a doctor regularly. (Russ B., 44 years old)
  • Never give up, do as your doctor tells you to. (Darlene, 47 years old)
  • Educate yourself, get a good medical team and solid emotional support. (Kelly B., 49 years old)
  • Educate yourself. You are your best advocate. (Laura, 53 years old)
  • Make your GI and your primary your partners. Do not blindly follow direction. Ask questions, read up on the internet, ask the Crohn’s community. Being informed is your best choice. (Diane M., 60 years old)
  • Make sure that your family understands the disease. They can be a great support system. (Teri, 62 years old)
  • Look for help until you find docs who listen, care and help. (Patti M., 64 years old)

Crohn’s Disease Resources

What specific resources have you found most helpful?

  • Crohn’s forum. (Mohammed S., 20 years old)
  • FB page Crohn’s Disease Community. (Brittany, 21 years old)
  • Support groups. (Leah, 30 years old)
  • Joining my local chapter of Crohns and Colitis Canada and creating an in-person support group as well as my IBD clinic. (Tiffany, 33 years old)
  • The boards and groups on Facebook. (Megan, 34 years old)
  • Breaking the Vicious Cycle by Elaine Gottschall. (Misty, 37 years old)
  • Group chats. (Lorena S., 38 years old)
  • Online articles and social groups on Facebook. (Russ B., 44 years old)
  • Crohn’s disease groups and pages on Facebook. (Darlene, 47 years old)
  • Support group, phenomenal Rhuematologist. (Kelly B., 49 years old)
  • Crohn’s and Colitis Foundation, support groups. (Laura, 53 years old)
  • The internet and a GI who is interested in keeping me informed and cooperative (I’m questioning all the time). (Diane M., 60 years old)
  • Internet. (Teri, 62 years old)
  • Docs, online info and support. (Patti M., 64 years old)

Crohn’s Disease Stories

Share an interesting experience you’ve had related to living with Crohn’s Disease.

  • While I was on the hardest pain ever, I dreamt about the prophet Muhammad. (I’m Muslim) (Mohammed S., 20 years old)
  • Finding and talking to advocates online. (Leah, 30 years old)
  • Traveling with a bunch of auto-inject pens through an airport was an interesting experience and made me glad I had a note from my doctors saying why I had to carry them all. (Tiffany, 33 years old)
  • I have become more mindful of what foods I am taking into my body and how important it is to avoid processed foods. I have become entirely more mindful to be kind to people…to love with all I have. (Misty, 37 years old)
  • I started my prep for colonoscopy, and then drove to get my son from work. I was stopped by a cop for a burned out taillight. I asked if he could hurry because of my situation. He let me off with just a warning. (Russ B., 44 years old)
  • I was hospitalized twice, had 7 blood transfusions due to bleeding ulcers. I am now B12 deficient getting B12 shots for the rest of my life. (Darlene, 47 years old)
  • I’ve met “chronies” in every walk of life. (Kelly B., 49 years old)
  • That people don’t think I look ill. I was hospitalized for 10 days with pancreatitis and had my own sister question whether I was faking it because I didn’t ‘look that sick’. (Diane M., 60 years old)
  • I tell my friends that if we gave a scheduled outing, just remember I will be there unless Mr. Colon says “no.” (Teri, 62 years old)