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mj1966
Regular Member


Date Joined Nov 2009
Total Posts : 46
   Posted 11/6/2009 2:34 PM (GMT -7)   

Hi everyone, I wanted to see what everyone's symptoms have been since dealing with Crohn's.  I have battled with this lovely disease for 10 years, about a week after my daughter, 2nd child, was born.  I have been in the hospital 2 times and have had to have 2 blood transfusions.  about a year ago I started having different type of symptoms besides the normal pain in the tummy, diarrhea and aches- as if I have the flu but no other symptom of the flu.  about a year ago, I started experiencing major bloating in the upper portion of my stomach. I also had major gas, but not from releasing it, NOT being able to release it.  I would be up all night sometimes and then throwing up- I was drained and had to take the day off of work.  My stomach hurt but it was a different type of pain than the normal cramps (isn't it great how your stomach can hurt so many different ways?)  I also get anemia several times in a year and have to be treated for that.  I had a small bowel follow through x-ray a few weeks ago and it was determined that the Crohn's is severe enough that I may have to have my first surgery to take out the diseased part of the small intestine.  I am on prednisone (40mg) a day for 3 weeks then will start to wean off.  I am then supposed to start thinking about going on Humira.  I am truly overwhelmed. I have dealt with this for a long time, but I truly thought surgery would be when I was so down and out that it was the last option. Although I am suffering with all of this I have been able to function pretty well in my work life.  I get extremely tired and can not concentrate, but am pretty used to that.  I did research Crohn’s right after first being diagnosed many years ago but am starting to look into this disease again.  One of the things I find different than anyone else is I am not underweight but am very much overweight, going on prednisone right now is a real stress for me.  I know I need to eat more healthy, but with the budge that I am living on it’s pretty hard to buy some of the healthy foods that are available. If anyone can help me out by giving me some tips, advice, similar symptoms or anything you think I would benefit from I would greatly appreciate it.  Thank you for taking the time to read this.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/6/2009 2:57 PM (GMT -7)   
The bloating and gas are likely from SIBO (small intestinal bacterial overgrowth) which is due to reduced SI motility allowing bacteria to multiply in the SI where they are usually found only in small numbers. In your case, that seems to be due to a stricture in the SI which also has the effect of preventing the easy passage of the gas generated. Bacterial overgrowth can cause diarrhea or constipation (depending on the type of bacteria that predominate) and results in pain as a result of bacteria attacking the SI lining or gas blockage. It also results in malnutrition as a result of the bacteria competing with your digestion for food.

I found out by accident that you may be able to control the symptoms by doing a colonoscopy prep! A day of fluids or soup avoiding sugary drinks (to starve the bacteria in the SI) and some laxative like milk of magnesia to move things through may help the flu-like symptoms. I was feeling like that once when I was due for a Cscope and I started feeling better while I was doing the prep.

After that you should eliminate sugar entirely from your diet - replace it with honey or do without. You should also eliminate corn syrup, thickeners (the various gums and carageenan) and cut down on starches. This nixes a lot of prepared foods. All those things are bacteria food and promote bacterial growth. Of course, the stricture in your SI is the real cause of the problem and you may not be able to eliminate the condition entirely while that is still there.

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 11/7/2009 1:00 AM (GMT -7)   
i find there are 2 types of being tired 1) when you are actually tired and 2) when you have gas, are bloated and the body shuts down and you feel tired because the body actually wants some time to process the bloating. either way resting is remedy but even better is to avoid the sugary stuff in the first place and get the bowel time to be in a normal flora. If that means eating 6$ salmon instead of the 1.50$ supermarket pizza, so be it. A gluten free type diet longer term might work and figure out what foods are making you bloat and avoid them. cut down on the carbonated beverages. There is also exercise and i say this not for overweight but for circulation blood flow to the bowel but as well for extremities. so try to distinguish between 1 and 2 above and get the exercise in before either occur. Try a hot shower after eating will keep the bowel active to process the food, or brush teeth after eating to let the body know you have completed eating. Just tricks try what works for you. I sit alot so I have weights next to my desk to try to keep away the bloating from sitting. There comes a point though, the bowel needs to relax,-- but relax in order for peristalis to occur.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/7/2009 3:05 AM (GMT -7)   
I too am an overweight crohnie. I think you know your body best and know how to deal with your disease. Humira has been a real life saver for some. What do you mean by eating healthier? Because for most crohnies a salad is hard to digest. Usually chicken, rice, and just real soft stuff like soup etc is safe. I have also noticed that higher fat foods slow down my transit time. But this disease is so individual. One thing for me is that walking helps with the bloat and it really doesn't have to be far it just has to be some where I am free to fart. Unfortunately sometimes this means I shart. So I usually pace back and forth inside my home.
Sometimes surgery is an option to look at before you obstruct, because it is generally a good idea to have it when it is a nonemergency.
Since it is very common for crohnies to have vitimen def I would think about getting blood work down for b-12 and vit d at the very least. I have to get prescriptions for my b-12 shots and vit d gels, because just the regular suppliments will not cut it for me.
 
Also if you happen to be wearing clothing that restricts the ability of the bowel to move (jeans, spanx, etc will do this for me) can cause very painful gas especially if it happens several days a week.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 11/7/2009 3:11:12 AM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/7/2009 8:42 AM (GMT -7)   
Hi Sugar Smith,

And welcome to Healingwell. Does sound like you have a stricture going on. I would try to stick with a low residue diet until they can get this figured out. Remember easy to chew, easy to digest. One thing that helped me alot when I had a stricture was to avoid red meat. Red meat is very difficult for even the healthy intestines to digest, you can only imagine how hard it is for diseased intestines. When you have those episodes of what you are calling trapped gas sounds very much like you are suffering not from painful gas symptoms, but a obstruction. Tell me if this sounds like what you are experiencing. You get VERY bloated and cannot pass air from either direction, you cannot have a BM, you have pains that comes in waves much like labor pains, and then eventually you get nauseous and throw up. Is that what you are experiencing? If so, the next time this happens get your butt to the ER, as you are obstructing. Obstructions can be very dangerous and you could perforate your bowel.

I went thru a almost 20 year remission where I didn't even think of my Crohns. I kept having these episodes like I described above and would go to the ER. They would tell me they were gastritis episodes or that I was constipated, until one time I finally got a good doctor who discovered I was completely obstructed. Thats when I had my emergency resection. I hope these docs can get you figured out before you wind up in my situation as I can tell you a planned surgery is much better on you than a emergency.

Sending good thoughts your way, and hope they get things figured out for you soon.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/7/2009 9:52 AM (GMT -7)   
I agree with Nanners -- it definitely sounds like a stricture, in which case surgery can make a big difference. If that does turn out to be the case, I would encorage you to start on a diet like the SCD. It will definitely help you lose weight and you will (most likely) also feel much better ... although don't be surprised if your doctor has never heard of the SCD :-)
34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/7/2009 11:26 AM (GMT -7)   
While I am a big believer in throwing everything in the arnsenal (meds, suppliments, diet, etc.) at this disease, but I did not lose weight on the SCD. So if it does not help do not worry about it, because this disease is very individual.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/7/2009 2:30 PM (GMT -7)   
Just saw an interesting article on overweight and inflammation. The research seems to show that blood levels of saturated fats soar in overweight people and this in turn mimics the Lipopolysaccheride fragment of bacterial cell walls and thus triggers immune cells. They blame this for development of insulin resistance and chronic inflammation. Unfortunately they don't suggest any way to reduce blood levels of saturated fats. Link to article: http://www.sciencedaily.com/releases/2009/11/091103121603.htm

jamief
Regular Member


Date Joined Feb 2005
Total Posts : 200
   Posted 11/8/2009 11:34 PM (GMT -7)   
Howdy! I know how you feel, my recent flare is also like yours. I had a similiar experience when they did a colonscopy and small bowel follow through, I was told that surgery seemed like a good option too. My doc wanted to try to spare me surgery for now, so we tried a research infusion drug. While getting through the pre study testing and such, my doctor suggested that I go on a no fat, no fiber, no dairy diet. Yeah, I know that's hard to do, mainly got by with leaner meats and had to watch labels pretty hard for two months, but it did help and gave me the time I needed to see if this med was right for me. I was also on prednisone too. Talk to your doc about that :), maybe it'd help with the pain and make things a bit easier.

mj1966
Regular Member


Date Joined Nov 2009
Total Posts : 46
   Posted 11/9/2009 7:35 AM (GMT -7)   
Thank you to everyone for responding!! I have learned so much from these responses. My doctor seems to be a good doctor but for some reason in this area that I live in (there are only 2 or 3 gastroenterologist in the area) they aren't very informative- the doc I have now at least gave me a cd on Crohn's. I am so glad that I stumbled onto this site. Even though I know my diet has ALOT to do with my health right now (I also found out that I am allergic to yeast and milk recently) but, unfortunately, I haven't been "pressured" to really sit down and take that HUGE first step in doing something about it. You are all right about this being an individual disease. I guess the main thing to realize is trial and error for me. I am looking forward to reading more on this and thanks again for all your help!
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