Not sure about so many things.

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mj1966
Regular Member


Date Joined Nov 2009
Total Posts : 46
   Posted 12/14/2009 10:08 AM (GMT -7)   

Hi All!

I first posted on here about 6 weeks ago.  I was put on a high dosage (40mg) of prednisone. Tomorrow is my last day (slowly weaned off).  I go back to the GI doc tomorrow to discuss how I am doing.  I was having a lot of problems with trapped gas, throwing up, constipation, bowl movements that were worm shaped (and in size), taking off days from work, stomach pains, etc.  Since the prednisone it helped but not entirely.  The doc suggested that if it didn't help that a surgery would be the next step and also discussed Humira as an option.  Tomorrow I want to go in and tell him that it helped me some, but not entirely.  Some of the other symptoms were eliminated or very minor, but the bloating continues to bother me.  Sometimes the upper part of my stomach feels like it's going to explode and is so tight.  I’ve been on prednisone before but this time it affected me differently.  I actually had a lot more energy and was more focused.  As soon as I started weaning off of it, BOOM, I got tired, achy and struggle to focus on simple things.  My face and other body parts bloated up this time, which never happened in the past.  Anyway, I was reading some of the info on here about Humira and also people that are in remission or have been in remission.  I have thought that at certain times I was in remission but generally have always had some type of stomach pain (cramps) and diarrhea.  Not every time but more times than not.  Can some one describe what being in remission is? I know that sounds like a dumb question, but I'm curious if there are still some symptoms with this disease even though you are in remission.  Also, I find it hard to explain to the doctor how a medicine helped some but not entirely. I am afraid he will play it off and do nothing.  This is a fairly new doctor to me, so I'm not sure how he will be with all of this.  Also, my regular doctor ran a lot of different blood test on me - b6, b12, thyroid, d, etc to see how everything was fairing.  I was told it all looked good?  UGH! To someone who is always tired, that is not good news! Not that you want something found, but yet you want an answer to why you feel this way.  I am rambling, sorry- just so many things running thru my mind and not sure how to ask the right questions.  Thanks for reading/listening!


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 12/14/2009 10:48 AM (GMT -7)   
Welcome to the best place I know fro help. Not that I can help much but there are sure others who know lots.

The standard answer to your questions is everyone is different. I felt like remission for me was lessened pain and less trips to the bathroom a day, which were not all runny.

My story does have an ileostomy in it now. I fought the surgery thing bitterly and wish I hadn't. If I'd had a J-pouch for awhile and got better then maybe things wouldn't have gotten so bad there were no other options but the surgery and permanent bag.

Prednisone worked the exact same way on me. First there were not too many effects but as I had it more it bothered me more. No other biologicals worked either. Was allergic to Remicade and afraid to take Humira because they are from the same dirivative? Something like that. Naturalpath worked great for pain and stuff but wasn't clearing completely.

Anyway, hope you can work it out and feel better quickly.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


mj1966
Regular Member


Date Joined Nov 2009
Total Posts : 46
   Posted 12/14/2009 1:15 PM (GMT -7)   
Thanks! Yeah, the more I read about it the more I realize that everyone is different -yet the disease does things to people that are the same. Crohn's is definitely a funny disease- if you want to call it that.
Sometimes it's good to just type stuff that is in your head and it helps lessen the nerves or worries. Thanks again!

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/14/2009 4:34 PM (GMT -7)   
I too never knew what remission was until I had my surgery. I feel like a normal person now, no more bathroom emergency, eat almost anything. I do get a wierd pain every now and then but my GI say's it is a spastic colon.
I go and have a colonoscopy on Wed. to see if the disease has stayed away or decided to come back. If it's back I will try Humira or any other drug to ward it off. No more being afraid of the drugs.
Anyhow, I wish you well and I hope you find remission soon.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/14/2009 5:40 PM (GMT -7)   
You know what you should ask your doctor about especially the description of bloating and gas that feels like your going to explode, ask him if its possible you have small intestine bacterial overgrowth. I felt just like you described and come to find out thats what was wrong with me. Did a 10 day course of Cipro and within days I felt better. Just another suggestion to ask him about.

I am in remission right now. I have had 2 resections, so this is my remission after surgeries. I seem to tolerate more foods than I did, I still have to watch what I eat as some foods still irritate and can give me d. I live regularly on a low residue diet, that works well for me. I generally have 1-3 bm's per day and they are not long logs, but are small bits, but still a good bm. I am still tired, but my B12 shots help that some as well as extra Vitamin D (2000 units). I just started the Vit D in Sept and have been pleased with the results. You will still know that you have Crohns, but for the most part you feel better. But if I have too much stress or eat the wrong thing I will have a bad day or two. Hope that helps a little.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 12/14/2009 6:53 PM (GMT -7)   
I wish I could give you a good answer. I've never considered myself to be in remission but there have been periods of time where I felt like a relatively normal person...it may just be that my symptoms were mild enough at the time that I was able to tolerate them well. I asked my GI about it once and he said that even in remission, a lot of people still have some symptoms but as many people have pointed out...it's different for everyone. I guess it's possible to go into remission and have maybe some mild cramping sometimes or some D and maybe for some people they are completely asymptomatic. I get the gas thing sometimes, where my upper GI is super bloated and hurts really bad. I don't know what causes it. They told me it was acid reflux but the meds never helped and it seems to come and go on its own. There may be something to the bacterial overgrowth that Nanners mentioned. Definitely be honest with your doc about the Pred helping but not completely taking the symptoms away. They may have you go back up on the Pred and get you some antibiotics or something for a little while until they start you on some new meds. I hope you find something that works for you soon!
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


redwood
New Member


Date Joined Apr 2009
Total Posts : 11
   Posted 12/14/2009 8:34 PM (GMT -7)   
When I had rumbling in the tummy and lots of gas it too was a bacteria in my stomach. They did a breath test to see if I had one.

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 12/14/2009 9:21 PM (GMT -7)   
Nanners, how do they diagnose small intestine bacterial overgrowth? Is it just with a breath test and is that done in the office? When I had my ileocecetomy, the surgeon said I'd be more susceptible to bacterial problems but my GI said it wouldn't change anything.

The gastroguy I have now first said I had "ileitis, probably Crohn's" on the phone, then changed it to IBS two hours later when I got to the office. He said I have so much gas (the burping kind!) because I must be swallowing air. I never had gas like this before the surgery, it feels like something is fermenting in my stomach. It flares up occasionally getting pretty bad until I can barely eat, I'll have pain and D for a few weeks, then it gets tolerable again for awhile. I drink a lot of Pau D'Arco tea and take extra probiotics when I get extra gassy and that usually helps a bit.

I'm in the process of changing GIs. It took me a while to find someone that seems decent. I don't have good luck with doctors. One of my previous GIs lost his medical license for sexually harassing, abusing, and fondling patients while doing procedures. I'm glad he refused to give me the colonoscopy that I needed!

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 12/14/2009 11:23 PM (GMT -7)   
A breath gas test might be done, but normally they just go by symptoms.

Sugar Smith - always being tired can also be due to bacterial overgrowth. I recently read that Crohn's patients consume above average amounts of sugar. This could be both a result of bacterial overgrowth (bacteria competing for sugars with your gut, resulting in low blood sugar) and a cause of bacterial overgrowth.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/15/2009 7:38 AM (GMT -7)   
Yeah he diagnosed just by the symptoms. The 10 day course of Cipro fixed me right up.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 12/15/2009 7:58 AM (GMT -7)   
Sugar, I wish I had a good answer for you. I am new to this and others here know way more than I do. I do hope you find a good new doctor though. I have a good one but he is an hour away. I am sitting here watching Rachel Ray on tv with all this holiday food. I just hope we can all feel better for the holidays so we can enjoy them, even if we can't eat all the food, ya know? I do like my strong probiotics, VSL #3. A lot of people here use this probiotic. It may help you with the gas and if you have bacterial overgrowth. Good luck to you Sugar and have happy holidays.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


bitts
New Member


Date Joined Dec 2009
Total Posts : 1
   Posted 12/15/2009 8:43 PM (GMT -7)   
  This is my first time in this format, I too had a ton of questions in regards to CD.  I was on prednisone for about 1yr. I did very well when I was on it but stared to have pain (stomach, rectal and joint) when I was taken off of it.  I am now on IV Remicade every 7 weeks. The IV takes about 2.5-3 hrs from beginning to end.  It is expensive($4K +) if you have good insurance or even if you don't have insurance there is a program that you can get on to help defray most of the expense.
 
I experienced the same symptons as you, lots of stomach pain, it felt as though my intestines were being squeezed. I was always constipated, I could not expell any gas. I felt like I was going to explode at any minute. I wound up in the hospital in 07 for about a week in December lost 20 lbs, again in 08 same time frame for a few hours, and had another episode just last week (same week in December as the last two).  Seems pretty coinsidental-Christmas, stress-you get the picture.
 
there is no "cure" for CD, it has to be managed and it can take some time to get the right formula.  I am very happy with Remicade, I feel better afterwards; no joint pain, stomach etc.. but I get really scared when my 7weeks are up. I look forward to going.
 
the other really big problem that I'm having is with my teeth.  I have read all of the comments in this forum in regards to this subject. Everyone has had the same problems that I am now experiencing.  I am 51 an have had two root canals, 4 fillings, two caps and a cracked tooth since November 09, it's now Dec 09!  I'm really geeting upset about this.  I started looking to see if anyone else was having these issues-and yes they are!!  
 
I'm going to the dentist on thursday, I will be bringing him a print out of all of the comments from the other Cd suffers.  This disease effects the entire body-just about every aspect.  I've had swollen knees and legs, unable to walk or stand-that's just the beginning.
 
don't give up, keep yourself thinking positive, eat healthy, see your dentists, exercise as best you can and talk toyour GI about Remicade.
 
Life was not suppose to be easy, it's how we handle all things that make us stronger for the better!!  Ask God to give you strenght and guidance.
 
Thanks for listening...I will pray that all works out well for you!
Bitts51
 
 

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 12/15/2009 9:02 PM (GMT -7)   
bitts, it is odd that we all have so much in common. I had my first cracked tooth, root canal and crown this year (like I needed that expense.) I too am having another Holiday time flare. I look forward to this time though, and am not stressed about it. However, fall is a very busy time for me and I have to work so hard to get my time off in December, I just get too stressed out. I had to work all weekend and came back sick. This was one of the worse attacks I've ever had as far as pain and bleeding go. thank god for loritab is all I can say. I am also upping my antidepressants. Part of my stress has been all my medical bills and trying to keep up with them, work and everything else. Yes, sometimes we do have to ask God for help and pray for ourselves and others out there with IBD.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


mj1966
Regular Member


Date Joined Nov 2009
Total Posts : 46
   Posted 12/22/2009 2:10 PM (GMT -7)   
Thanks to everyone for their responses! I was thinking a few years ago that I was in remission, but I was never without some type of pain or D every once in awhile. I wondered if I really was, but according to some of the comments I guess I probably was and that we're all the same.

My doctor was to wait on the surgery. He feels that should be the absolute last resort. I am going to be starting Humira. I am nervous about this and still have alot to read up on it. I am willing to try it. I hope I don't have too many bad reactions to it. Positive outlook/positve results, right?

The doctor I have now seems to be pretty good. He seems to know his crap, no pun intended.:)There are only 2 or 3 specialits in my area, so I am limited on who I see. One thing that is weird is he has never had me sit on the table or lay down and listen to my stomch...maybe that isn't something they need to do, but every other doctor I've had has listened or pushed down on it to see or feel- well whatever it is they are checking for. The current doctor does seem intelligent though and I am hoping he knows what he is talking about.

I could handle almost everything but being tired is so hard to deal with. I am taking a multi-mega vitamin and had alot of blood tests done by my regular doctor, but nothing came back abnormal. It's a pain literally! I need to ask him about the bacterial overgrowth - you would think he would know to check into that!

Thanks again for everyone's advice and good thoughts! I appreciate it very much and I wish everyone a very Merry Christmas!!

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 12/22/2009 8:28 PM (GMT -7)   
I believe that I have found if I take too much or the wrong probiotic that I get those pains. Be careful with that stuff. I also found that if I am in "polite company" and hold my FARTS (man it is fun to say that in front of all of you) I can get bloated and have pain. Walk away from the people you LIKE and let em out.

I am not sure I'm on the mark on these two points but it is all I have on this topic. Luck
I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for two months and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
Your doctor will know nothing about this being for Crohn's, it is my observation.  Question is is it safe for you. I can't make money on this, it's already in your kitchen.  I just want to help.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.  Give it about ten days.  I am NOT a healthcare professional.   Ask your doctor if this is safe for you.  Same Blue dye that is in Gatorade etc.

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