Hello fellow Crohn's sufferers. I am 27 and was diagnosed 6 years ago with Crohn's. I have been in complete denial ever sense. At one point I was even certain I had intestinal parasites and demanded testing. Even now after 6 years, I don't want to accept it. I have refused to take medications since diagnosis, except otc iron. I am currently searching the internet like crazy for something natural. I usually go almost a year in between flare ups, then live with the symptoms of the flare up to the point that I can't take anymore blood loss and have a colonoscopy. I always go back into remission after every colonoscopy. I'm currently having another flare up, much sooner than I expected, and probably the worst so far. I have a prescription to pentasa, but I'm afraid to start taking it. I dont want to take 8 pills a day for the rest of my life. I have never talked to anyone in great detail about my disease. My close friends and family don't understand and don't take me seriously. I live in a cloud of sadness the entire length of my flare ups. I'm embarrased and alone. I'm interested in learning more about this disease and investigating treatments. I have a 3 yr. old and am afraid for her to either lose me way too soon, or developed this terrible disease. Mostly I just want to read other peoples stories so I know I'm not alone.
In denial.
- Thread starter irie_cas
- Start date
Help Support Crohn's Disease Forum:
Hi irie_cas -
You are not alone. I'm a newbie here too, you can read my story here if you want: http://www.crohnsforum.com/showthread.php?t=32905
I was only diagnosed a year ago, but it has been a pretty tough year. I feel very alone also, but that's why we're here right? There are many stories and experiences on this board that have given me some hope that I can still have a productive life.
Also, you have your little girl! I didn't have children and now am afraid I never will due to this disease. Cherish her and make her your inspiration to live a long and healthy life - whether that involves drugs or natural treatments.
Best of luck to you!
You are not alone. I'm a newbie here too, you can read my story here if you want: http://www.crohnsforum.com/showthread.php?t=32905
I was only diagnosed a year ago, but it has been a pretty tough year. I feel very alone also, but that's why we're here right? There are many stories and experiences on this board that have given me some hope that I can still have a productive life.
Also, you have your little girl! I didn't have children and now am afraid I never will due to this disease. Cherish her and make her your inspiration to live a long and healthy life - whether that involves drugs or natural treatments.
Best of luck to you!
So sorry to hear you're having a hard time. Though I've never been on Pentasa, I am on another similar antiinflammatory called Asacol. Its pretty mild stuff really. Before my IBD diagnosis, I was never the type to take anything even for a headache. I don't smoke or drink or do recreational drugs either. Never liked the stuff. I had a very difficult time dealing with the psychological aspects of this disease and remained suffering with pretty severe symptoms for 3 years until I finally went for a colonoscopy. I did it for my children, who couldn't understand why mommy was "hiding" in the bathroom. Once I realized that my misery was detrimental to their psychological well being, it was long overdue that I help myself.
When you get your flight instructions on an airplane, you should first put on your own oxygen mask and then help others. The same can be said for this situation...a mother needs oxygen for herself before she can be helpful to her children. Give yourself that oxygen, whatever it may be, so that you can be a better mommy.
When you get your flight instructions on an airplane, you should first put on your own oxygen mask and then help others. The same can be said for this situation...a mother needs oxygen for herself before she can be helpful to her children. Give yourself that oxygen, whatever it may be, so that you can be a better mommy.
Sorry to hear you're having a bad time of it and not getting the support you need. I was diagnosed last July after months of suffering, I cried after the diagnosis and am on 9 tablets a day now. I joined NACC (National Association for Crohns and Colitus) and there help was incredible. I have a very supportive partner and my sister's are great too so I know I'm very lucky. I'm still trial and error with foods and it really helped me on this site reading and writing my thoughts, questions and queries and people here are brilliant. Of which without who's help I'm not sure what state I'd be in. Every day is a learning curve, my crohns liason officer told me "Drink, Eat, take your tablets and be merry". Best advise really. Be positive and remember others are in similar situations and will listen and help where they can. Take care, all the best 
David
Co-Founder
Hi there and welcome
I can understand your denial and apprehension.
Let's look at some of those more natural treatment options, shall we?
1. Have a look at enteral nutrition and our Enteral Nutrition forum
2. I personally like the Specific Carbohydrate Diet or [wiki]Paleolithic Diet[/wiki] for people with IBD.
3. Low Dose Naltrexone seems rather interesting though some might not call it quite so natural.
4. Medical Marijuana has helped many and more are coming around to its benefits all the time.
5. How about a fecal transplant? Seriously, read the ENTIRE thread.
6. Monitoring vitamins and minerals that people with Crohn's Disease are commonly deficient in and properly supplementing when necessary can make a huge difference. The big ones include [wiki]vitamin B12[/wiki], [wiki]folate[/wiki], and [wiki]Vitamin D[/wiki].
I hope that helps. Again, welcome I'm glad you're here.
I can understand your denial and apprehension.
Let's look at some of those more natural treatment options, shall we?
1. Have a look at enteral nutrition and our Enteral Nutrition forum
2. I personally like the Specific Carbohydrate Diet or [wiki]Paleolithic Diet[/wiki] for people with IBD.
3. Low Dose Naltrexone seems rather interesting though some might not call it quite so natural.
4. Medical Marijuana has helped many and more are coming around to its benefits all the time.
5. How about a fecal transplant? Seriously, read the ENTIRE thread.
6. Monitoring vitamins and minerals that people with Crohn's Disease are commonly deficient in and properly supplementing when necessary can make a huge difference. The big ones include [wiki]vitamin B12[/wiki], [wiki]folate[/wiki], and [wiki]Vitamin D[/wiki].
I hope that helps. Again, welcome
I'm glad you're here.
- Joined
- Feb 25, 2012
- Messages
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Hi Irie_cas!
I do take Pentasa and the same dosage you have been prescribed. I don't find the medication to be bad at all, but yes taking 8 tablets a day is hard. Like yourself I would more like to stay on the natural type of meds and modify my diet to help me feel better. Unfortunately I am undergoing a flare and have to take stronger meds to just get me back to where I was. I actually did not want to start taking Prednisone for this flare because frankly steroids scare me so I look at it this way, if I don't take my meds and don't take care of myself I could end up having surgery and I have been lucky enough to avoid it for now.
I had the same issue with people not taking me seriously as well, that makes living with the disease that much more difficult. Its certainly hard when you have no one to talk to, but that is why were all here right It took almost 2 years for me to be diagnosed and I was told by one doctor that it was all in my head, family and friends telling me Oh it can't be that bad...so yeah I know how frustrating people can be and how alone you feel. But you are not suffering alone here, I wish I discovered this forum years ago!
I do take Pentasa and the same dosage you have been prescribed. I don't find the medication to be bad at all, but yes taking 8 tablets a day is hard. Like yourself I would more like to stay on the natural type of meds and modify my diet to help me feel better. Unfortunately I am undergoing a flare and have to take stronger meds to just get me back to where I was. I actually did not want to start taking Prednisone for this flare because frankly steroids scare me so I look at it this way, if I don't take my meds and don't take care of myself I could end up having surgery and I have been lucky enough to avoid it for now.
I had the same issue with people not taking me seriously as well, that makes living with the disease that much more difficult. Its certainly hard when you have no one to talk to, but that is why were all here right
It took almost 2 years for me to be diagnosed and I was told by one doctor that it was all in my head, family and friends telling me Oh it can't be that bad...so yeah I know how frustrating people can be and how alone you feel. But you are not suffering alone here, I wish I discovered this forum years ago!Wow thanks everyone. I wish I would have discovered this forum a LONG time ago. I love how I have yet to read a rude comment on this forum. It's nice to know I have a place to go to search for answers or just have someone to relate to. The only problem is, I want to read every single story and could spend way too much time online I am pretty sure I will take my first dose ever of pentasa in the morning. I hope I can stop for a while when I go in remission again, or explore other options. Thanks again!
I am pretty sure I will take my first dose ever of pentasa in the morning. I hope I can stop for a while when I go in remission again, or explore other options. Thanks again!
