Does it ever get better??

It has been 3 weeks on the pentasa and entocort and now the doc has added rifaximin.  The pain is still there pretty bad in my lower right side especially after I eat coupled with a bunch of loud bowel noises.  If I don't eat then I still have pain.  The diarrhea is also very bad and I get dizzy after it.  (weird I know)  I have been trying to eat alot of liquids and some crackers and rice crispies with rice milk.  They think my chronic inflammation and all the crypts and ulcers have been there awhile.  Should I be more aggressive and ask to get rid of the inflammation with prednisone.  I am so worried about needing surgery that I am willing to do anything to avoid it.  How do you all live life with all these fears, how can you plan, go on a vacation, or anything.  I feel like I have been run over by a truck.  Does it ever get better..??

Chris 

It can get better, for me predisone didn't help it only seemed to mask the symptoms. For me it took Remicade to feel better and currently I have my life back. If you don't feel your dr is not aggressive enough don't be afraid to get a second opinion. I lived on Gatorade, rice, toast, and bacon. No clue how I kept bacon in but it is one of my comfort foods that seems not to bother me, but everyone is different.

Getting dizzy after diarrhea isn't a surprise. Include energy on the list of things it's draining from you! Not only are you dehydrating yourself and expelling nutrients before your body can absorb them, but you're also working really hard and stressing your systems; you're straining, you're cramping, your blood pressure and heartrate skyrocket, and you may be left feeling weak and shaky. And if you're running to the bathroom many times a day, you're completely exhausting yourself.

Make sure you get enough rest and enough liquids (even though they seem to pass straight through you).

Hi Nikki I too have the loud noises going on and as far as living my life after abcess surgery and a partial blockage,as well as having fistula's, I was put on pred .from there to Rem. ,Imuran .I have been able to enjoy lots of days and had a pretty good summer.I know it seems hard right now for you but things do improve has the Dr. mentioned surgery or are you just thinking about what might happen?If you find that you are having a hard time the pred. does work fast and might help till the other meds kick in .I don't have the pain now to contend with. I also went on low roughage diet that helped alot.Hoping you get some relief soon .Ensure helps keep the nutrients up and was great for me you can try soft diet like creamed soups srained I started eating tuna on white and tomato soup but I was also on the pred. I think that the pred. has side effects but it got me eating and I am sure that it helped with healing to get the food and nutrients the body needs. I had lost alot of weight and was on my way to surgery . My protien,potassium and B12 were down so I have come a long way since Nov. last year was a bad year with lots of pain now things are better with meds and diet .Hope you get things going better for you soon. lol gail

Surgery is my one and only fear.  If I knew that there wasn't a chance of having surgery in this lifetime, I would be the happiest human being in the world!!!  what I am afraid of in terms of surgery is that I will not wake up from it.  Maybe it a phsycological (sp?) thing, I remember when I gave birth to my children, I begged my doctor not to give me anesthetic, and he was so surprised, he told me other women begg to have one!!!   I don't know why I'm so afraid of having surgery, it's just the way I am.  On the other hand I know that surgery has helped a lot of people and given them years of remission.  Maybe if I knew that surgery would definately give me my old self back for a couple of years, I would do it, but if nobody can guarantee that this is the case, then I refuse to have it.  Don't get me wrong, this is just my way of thinking, that I will not opt for surgery unless I have tried all the medicine there is out there with no luck.  For the time being I live a pretty normal life just on Entocort and Salofalk, and I'm not planning a trip to the hospital any time soon, ha ha!!!!!

But I would really be interested to find out if there are other people who have avoided surgery for many years like TeachingAngel.

Regarding your question of living your life with all these fears, let me tell you, it gets better, first you think about it every single minute, but as time goes by, you start to forget it from time to time, because life goes on, and life is so much more than Crohns!!!!! 

Try to find things to do, things you enjoy to do, read a good book etc., and if you think it helps you, talk to the people you love about your fears, it has always been a relief for me to discuss my emotions with my husband.  He always gives me strength to carry on.

Christina

Nikki, Salofalk is a pentasa drug, that's the trade name here in Greece.  I have been on Entocort for more than two months, and I saw an improvement within 2 weeks, but it can take up to 8 weeks to work, so you have to be patient.

I understand that you have been through a lot of stuff, that's why you have to be optimistic, and enjoy every single moment of your life with your family.  Believe me, Crohns may not have a cure, but it's a manageable disease.  Being positive and having a smile on your face, can keep you going!!!!!

Greek hugs,

Christina

Hi Athensgirl Your hubby sounds great could we borrow him or are you keeping him to yourself? I can relate to that surgery thing I am glad mine for abcess is in the past and hope it stays there but all in all I am glad I had it because it was absolutely nesscessary.Don't worry too much they don't like to operate unless they have to, and they do the med thing first and now the meds are helping more then ever before. lol gail

Some like me have had to undergo surgery to survive, I didn't have a choice. Any time they put you under there is a risk, we see so many make-over programs these days I think they tend to trivialize the dangers of anaesthesia, in the quest to be one of the beautiful /plastic people..
Any patient, who smoked and was schedule for surgery got a visit from the anaesthetist and he would tell them that it was never too late to pack them in. I was always amazed the day following their surgery how patients would literally crawl out of bed and head off outside to get their nicotine fix, there is a non -smoking ban in force so patients would have to go to the far side of the car park.
Tess