Does it ever get better??

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nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/14/2007 5:26 PM (GMT -7)   
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 

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 9/14/2007 6:02 PM (GMT -7)   
Did you ever get tested for being lactose intolerant, if you are and you are using milk that could contribute to the problem. Try gatorade, powerade or somethign with electrolytes to help with the dehydration that may be occuring. Smart water is a plain water that is fortifyed with electrolytes just not as many as sports drinks. Also try things such as popsicles, clear broths and juices and see if that changes anything, maybe try to avoid food for a cpl days and do the clear liquid diet thing and see if in those 2 days you see a difference. If you do try that and find it works or it doesnt make sure to report that to your GI first thing monday morning that may give the doc insight on if he/she needs to be more aggressive with your Tx
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


want_2_be_well
Regular Member


Date Joined Sep 2006
Total Posts : 181
   Posted 9/14/2007 7:23 PM (GMT -7)   
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.
want_2_be_well AKA Mel
32 year old Female
Diagnosed with CD 2006, had been ill off and on for over 10 years.
Also have seasonal allergies, milk allergy, and asthma.
CD Meds: Remicade every 8 weeks, Imuran 50 mg, Pentasa
 
 


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 9/14/2007 8:00 PM (GMT -7)   
Prednisone will not get rid of the underlying disease activity. It will only mask the symptoms. Unfortunately sometimes it's the only medicine that makes us feel better. I can understand how overwhelmed you are feeling right now. But, yes it does get better. You really need to give yourself time to come to terms with the advent of this disease into your life. It is natural to feel a sense of loss. You will never be a wholely healthy person again. Crohn's is forever whether you are in remission or not and that is really tough to take. It is not welcomed -- any more than I welcome severe near-sightedness or one of my in-laws -- but life is easier with acceptance. When I wear my glasses and when I am civil to my weird in-law I am adapting to a new normal. And it does take time to adjust so please be patient with yourself. Allow yourself to move through the stages of grieve and you will come to acceptance -- and with that will come peace.
Belleenstein:

30+ years living with Crohn's.


nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 9/14/2007 8:03 PM (GMT -7)   

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).


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 9/14/2007 8:39 PM (GMT -7)   
Yeah... having an incurable disease sucks... :(...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/16/2007 4:02 AM (GMT -7)   
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

TeachingAngel
New Member


Date Joined Sep 2007
Total Posts : 18
   Posted 9/16/2007 6:53 AM (GMT -7)   
it's great to be in a place where people can relate to the weird things and pains that are going on in our bodies.  a lot of my friends can't really relate when i want to talk about the crazy sounds coming from my gut or irregular bm's.  thanks guys.
 
anyway, i've successfully avoided surgery for 19 years.  i don't want any, i'm afraid.  it seems like a rabbit hole.  anyway, i was fortunate to respond well to prednisone when i needed it.  it seemed like a quick fix and got me back on a road to recovery a lot faster than any other meds.  i've never stayed on it long though.  plus, i've got a major problem trying to gain weight so the pred helps my appetite.
 
right now my disease is being controlled with remicade every month.  and life is just about back to normal.  i had to stay in the hospital last month for a week, but that hasn't happened in about 5 years.  so you really have to make the most of life while you're feeling good.  i went on three trips this summer.  i planned for them when my disease was under control and i had a great time.  you have to have a positive outlook.  you won't be sick every day of your life, although at times it seems that way.  things do get better, but you have to give your body some time to heal and adjust to the medication. 
 
i know this may not be "doctor recommended" but i just pop some immodium for the diarrhea if it's bothering me and i have to work.

athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 9/17/2007 12:54 AM (GMT -7)   

Surgery is my one and only fear.  nono 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

nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/17/2007 1:46 AM (GMT -7)   
Thanks Christina for all your ideas. I too am really truly afraid of surgery. Like you I also opted for no anethesia with both kids and even when they did my 2 colonoscopies I begged for the mildest sedation so I was in a twilight sleep and did get to see everything. I had a daughter who had leukemi so now I am a germaphobe and the hospitals scare me.

What is salofalk? I am not sure how long it takes for these meds to kick in but I sure wish the pain and diarhhea would go away already!!
Thanks so much
Chris

athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 9/17/2007 2:12 AM (GMT -7)   

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

 


Kurt
Regular Member


Date Joined Feb 2004
Total Posts : 65
   Posted 9/17/2007 2:13 AM (GMT -7)   
No - No - No ! ! ! It's day to day ..If you have CD or GERD ..It might go into remission, but to get use to feeling good , my remission was six months , felt so good went back to work, got so sick they had to put me back on remicade ( on for 3+ years ) ..I am 64 and my wife and I wait for a day I am feeling good ( not many) go to dinner and a movie. These last 12 years has been hell on her....Maybe you will go into remission for longer time, I hope so !!!
KURT HILL


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/17/2007 6:03 AM (GMT -7)   
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

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/17/2007 8:25 AM (GMT -7)   
Yes, it can. I have had remissions that have lasted up to 3 years...


Matthew

gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 9/17/2007 1:49 PM (GMT -7)   
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

athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 9/18/2007 4:44 AM (GMT -7)   
Hi Gachrons,
 
Unfortunately nobody can borrow my husband ha, ha!!!  But seriously I am very lucky to have him by my side, and I wish everybody in this world could find someone so caring. He loves me, he loves our children, and he is so optimistic about everything, both of his sisters have serious health problems, the one has breast cancer and the other one has to do an operation to remove her thyroid (sp?), but he is always there for all of us, he is travelling to London in 2 weeks to see his sister and support her once more.  I really try to learn things from him by watching how he reacts in various occasions.  Last time I felt sick, he just lied next to me and hold my hand and told me "don't force your self to be strong, it's OK to cry sometimes, but then you have to stand up again and fight, because life is beautiful and is waiting for you to enjoy it".  How can I not love him???
 
Anyway if I meet somebody that resembles him, I will be happy to introduce you!!!
 
Christina
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