Possible colon removal

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shellypoo
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Date Joined Dec 2005
Total Posts : 896
   Posted 12/30/2006 9:05 AM (GMT -6)   
I finally heard back from my GI doc yesterday.  She was waiting on the reports from the ER.  She told me that my constipation is very severe and there was way too much gas on xray.  She feels that the only treatment may be to remove my colon.  She did say though that she is going to try to find me a constipation specialist that knows something about MS problems also.
 
It's hard to believe in my area, I'm near a teaching Univ., that no one ever deals with this issue.  Could it be that I am so very different than most MS patients that they don't know what to do????
 
I know I've posted before that I was told that if you don't have constipation you don't have MS.  Surely someone out there must know what can be done!
 
I'm sorry this is so much gloom and doom but that seems to be what i am dealing with lately.  I feel very alone in this issue.  Those of you that have reached out to me.....thanks so much, I really need it!
Michelle ><>
 
The choices you make today will determine your tomorrow.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/30/2006 9:34 AM (GMT -6)   
Until your earlier post, I'd never heard the expression, "...if you don't have constipation you don't have MS." I still maintain there is what I call "true" constipation -- hard stool, painful to evacuate -- and "sluggish bowels", where the stool eventually passes, often formed, but softer, and in an uncontrolled manner. And many with MS have the "sluggish bowels", not necessarily constipation.

Anyway...I'm really sorry you have to even consider having colon surgery! That has to be way scary. I've not heard of anyone else with MS who has needed that, if that is your question?
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 12/30/2006 10:33 AM (GMT -6)   
Oh my gosh, Michelle!! I am truly sorry to hear about this!! I really hope you don't have to have your colon removed.

I have an endo and colonoscopy scheduled for Jan. 4th to try and figure out my issues also. Maybe we can lean on each other!

On a lighter note, it is a joke with my hubby and me that I can only have a normal BM at Walmart. All I have to do is walk in the doors and I have to go. Maybe I should go to Walmart everyday at the same time, I wonder if that would help regulate me. haha

I hope that at least put a smile on your face!!

Take care of your self and let us know what you find out.

Lysha
When everything's coming your way, you're in the wrong lane.


DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 12/30/2006 11:26 AM (GMT -6)   
Hi Michelle.  I am also suffering from constipation.  It is so painful sometimes but fortunately with medicine and diet I eventually go at this point.  My Neuro and I have discussed this many times and indeed the culprit is MS as I never had this problem until my MS was officially active.  Here are a couple of sites that were informative.  Again, my case is not as severe as yours but I felt it would provide you some info and perhaps affirm that this is MS related in your case as well.
Best,
Christine

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 12/30/2006 11:36 AM (GMT -6)   
Hey Michelle

Boy! I'm so very sorry! No matter which way u turn u just keep getting hit. I hope they can find someone in u'r area...or afar...who can help with this and surg can be averted. That's a very drastic step to have to take and i'm sure the prospect has u terribly scared. Yes, from u'r area with the teaching hosp it seems very improbable that there's no doc with experience in this situation, but it'd certainly fit with u'r 'luck' lately to not have one nearby. I pray a good doc can be found and this can be treated rather than taking such a drastic measure.

Can this be in part due to the lupus or could there be anything else going on WITH the ms??? I have no idea at this point what else could be the prob, but maybe just food for thought. I'll certainly be thinking and researching myself.

I truely hope and pray u begin to get some relief. This has been so hard on u and u've been thru so much already. Thanks for letting us all know how u are and hopefully u'll be feeling much better in no time.

rhonda

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 12/30/2006 3:29 PM (GMT -6)   
Thanks to all of you for your support!  MS can cause constipation different in each person.  Mine is due to "gastroparesis" as Gracie's mom said.  The lesions are in a specific place not allowing the nerve impulses to get to the muscles in my gut.  I think it effects my whole colon but mainly the lower.  I never have soft bm's nor diarrea. (sorry!) All is very hard and not enough gets through.
 
I have tried glycolax and all of the other over the counter meds. + zelnorm and amitiza.  They do not work for me and alot of them make me very nauseous.  This is not new to me, even though I've only been diagnosed for a year, the constipation has been with me for 3-4 years, it has just gotten progressively worst over the last 18 mos.  Also, my diet is not the culprit nor lack of exercise or water.
 
Lysha, unfortunately Walmart does not have that effect on me...wish it would!  LOL! !  I'll keep you all posted, hopefully I'll have an appt. or something by next week.
Michelle ><>
 
The choices you make today will determine your tomorrow.


shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 12/31/2006 9:50 PM (GMT -6)   
Thanks Gracies mom! I got some good info. from the ostomie forum too. Hugs and prayers to Gracie. :) I have probably read it before but what disease does Gracie have? Take good care.
Michelle ><>
 
The choices you make today will determine your tomorrow.


CCTrain
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/3/2007 9:46 PM (GMT -6)   
Michelle,

Did the GI Doctor mention Ulcertaive Colitis at all??? Because that is what I ended up having after all the testing. This is a good opportunity to make sure that people realize that NOT all things that are wrong with you are MS. Sometimes you may have other conditions, at the end mine are MS, Ulcerative Colitis, Fibromyalgia, Arthritis and Degenerative Bulging disc disease.

When it comes to my stomach, I get no hunger signals, I get no "normal gastric sounds", I can't really pass gas and I have never been able to burp. I finally figured that my colon was so swollen that passing of anything not solid was nearly impossible. I ended up in the ER with internal bleeding after many visits where I was just told, it was nothing or was just gas. They also found out I had a gallblader chuck full of rocks and that was eventually taken out, which releived my vomiting of about 10 years.

I tried all of the medications for UC, after a sudden divorce I couldn't get medication for 3 months and I found out my UC was actually a lot better than it use to be and now I am on Colazal. I learned to meditate and control a lot of my stress through yoga and different natural methods, nice warm bath, etc. One thing that I do to stay regular is have a cup of coffee, I found out it helps with my constant headaches and keeps my bowels moving failry normally.

It never got to the point for me that I would have to have my colon removed, my UC is in the upper colon so that meant a colostomy bag and I can think of worst end results and at that point I would have done anything for relief. I believe my gastric muscles are probably in a constant spasm and currently i am taking morphine and balophen via a an internal pump.

I have now learned to listen to my body, give it what it asks. I stay away from food that is too rich, too friend and too spicy. Otherwise my diet is whatever I crave, the more freedom I had the more I craved salads and healthy food, go figure!!! I was even off chocolate for 2 years. This year was a year of comfort foods so I fell back into some bad habits but I am starting to stabilize and things are getting better.

Stress plays a major role in all of our symptoms, if you find this is true, you need to learn either biofeedback or meditation, trust me, it will truly help!

Michelle, best of luck with your ulcer, I hope that you can solve it without major surgery! And to everyone else, try to relieve the stressors in your life, stress is killing us!!!

Happy new year to all!!~

CC

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 1/4/2007 3:23 PM (GMT -6)   
No, this is not from ulcertive colitis.  It is definately from the MS.  I am seeking a specialist here and hope to have an appt. soon.  We'll see how it goes.  My reports from the ER showed a possible early obstruction.  For right now I am not using any laxatives, I'm scared to end up back at the ER!
 
I'll try to keep you all posted.  Thanks!
Michelle ><>
 
The choices you make today will determine your tomorrow.


CCTrain
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/4/2007 4:04 PM (GMT -6)   
Yes ending up at the ER is no fun, especially when everyone tells you you are nuts!!!! I know we have a lot of MS side effects that affect out gut, I hope whatever it is you find fast relief.

CC

julette
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/8/2007 8:54 AM (GMT -6)   
I am new to this site, do not have ms, but my 22 year old daughter does and I am trying to get as much info as I can regarding the disease in order to be a good support system for her.

Has anyone heard of colonics?? I would not pretend to recommend treatment as I am not a doctor and have no way of understanding your individual condition, Michelle, but I will relay a story...

My best friend in Junior High and High School had a mother with progressive MS. She became a colonic specialist (she is an RN) quite some time ago. She did so because she was having a lot of difficulty with her own bowels and had talked to many MD specialists and did not get the results that she needed. She then turned to colonics and told me that her condition became much better and today she has zero issues with her stomach. But the most interesting thing about all of this is that the person who trained her to do colonics and whose business she took over in Boise, ID has MS!! This woman is still living in Boise and tells the story of being in a wheel chair until she started doing colonics herself. Between colonics and diet she has not been in a wheel chair since. Coincidence? there is always that haunting maybe with MS because of the nature of the disease...relapse/remitt. But it has been many years, she is now in her 70s and she swears that colonics and diet are what have given her quality of life.

My daughter is utilizing Avonex and I am gently nudging her to add some alternative therapies since she now has low plattlets and fatigue is rearing its ugly head. Any good thoughts on that??

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 1/9/2007 8:09 AM (GMT -6)   
Julette,
Welcome to HW!  I'm very sorry your daughter has ms but I'm glad she has a supportive mom.  I am on Avonex too.  You have to be really careful about natural "alternative" therapies and ms because if you take products that build up the immune system etc.. it can nullify the avonex and also can provoke a flare. 
 
 The low platlets should come back up in due time.  I had low white counts and low red counts for quite a while and at the moment they are beginning to rebound.   Has your daughter asked her neurologist about all this?  There are drugs to help with the fatigue, provigil is the most popular one.
 
I will have to look into colonics since I am not familiar with them.  Thanks!  Take care. Please keep us posted on your daughter and she is welcome to ask questions/post herself! :-)
Michelle ><>
 
The choices you make today will determine your tomorrow.


julette
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/9/2007 4:50 PM (GMT -6)   

Michele and Gracie's Mom,

Thanks for you thoughts. I have heard that immune boosters may interfer with Avonex, which makes sense given that Avonex is suppose to decrease the immune system in order to stop it from attacking the mylen sheath, right? But I have also read that Omega 3 fatty acids (EPA) and Coq10 have been helpful in ms. Of course, my daughter will have to consult her neurologist before trying anything like this.

My daughter having ms at the age of 22 just breaks my heart, but she is amazing and seems to take things in stride. None-the-less helping her do her IV steroid treatments because her eyes have been hurting over the Christmas holiday was sad to see and made me want to find something that will make a difference.

It is helpful to read all of your postings that confirm the belief that interferons are good. They are so harsh that I just freak at my daughter using them, but of course am supportive. What the heck do I know after all!!!

Thanks for letting me vent here.
Julette
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