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My situation. In need of advice

constipation headaches back pain

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#1 seekinginfo324

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Posted 01 April 2014 - 11:06 PM

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  I really need some good advice. I'm in a really desperate situation and have no clue what to do. I'm now 23 years old and from a childhood of chronic constipation that wasn't properly diagnosed my colon has become enlarged and distended to the point where muscles can no longer function properly. Due to the excess mass of my colon I cannot bend over or squat properly and I cannot maintain proper posture sitting or standing for long periods of time . I  have chronic headaches and pain extending form my lower back all the way to my neck. In addition I feel chronically fatigued and weak. As a result I'm unemployable and can barely function on a daily basis in any task.

I have seen two gastrointestinal doctors and had a colonoscopy and have only been diagnosed with IBS. I have also been to a neurologist for my headaches and had a brain MRI to rule out any neurological conditions. I have tried amitza, linzess, and antidepressants which have not helped. I have also changed diet eliminating gluten and vastly increasing my intake of fiber. This has helped a bit but no matter what I eat my the muscles in my colon cannot maintain pserostasis in a normal rhythm. This results in usually one or two small bowel movements a day but never a feeling of complete evacuation and continual debilitating abdominal pain on a daily basis. Even taking 14 doses of Miralax will not give me anything resembling a complete bowel movement .I'm wondering if have some type of nerve damage as my lower abdomen often feels somewhat numb.

       The only thing that has helped me has been hydrocolonic therapy which I have received about once every 2 weeks for the past 6 months. This has helped improved my back, my headaches and increase the rate of pserostasis in my colon. However my colon is still nowhere near being able to function in manner that will allow me to live anything resembling a normal life.I have no clue how long this treatment might take to reset my colon to normal functionality and whether this is even possible.

       I have read a variety of posts on this site and none of the listed seem to match to the severity of the muscle and back pain I have.This seems like something beyond the spectrum of normal IBS. Has anyone experienced anything similar? The only other diagnoses that seems to fit my condition is colonic inertia.I have read a bit about  it online but never heard a doctor mention it as a possibility. 

      At this point I fear the only treatment that can really help me is surgery to reduce the length of my colon. I'm really not sure how pursue this as the doctors I have spoken to generally have not taken the severity of my situation seriously thinking im merely depressed, anxious. I'm also very frightened of the potential risks and of what quality life I can even have without a colon. Has anyone had this kind of surgery or similar experiences? Could you recommend a doctor who could give me a serious consultation (preferably on the East Coast in the Philadelphia region)?



#2 annie7

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Posted 02 April 2014 - 05:01 AM

Hi--so sorry for all your problems --chronic constipation is truly miserable isn't it.

 

about colectomy surgery. there are a number of people who have had successful total colectomies and a lot of threads on this subject on the AGMD motility disorders support board (maybe you've already found it?)   here's a link to one colectomy success story--you can do a search for others:

 

     http://www.inspire.c...lectomy-update/

 

and a long thread about several peoples' colectomy success stories:

 

    http://www.inspire.c...&page=1#replies

 

of course as with any surgery there are risks. the people who do best with total colectomy surgery are those who had all the proper tests beforehand to make sure they qualify and don't have problems that would rule out surgery. a good colorectal surgeon will make sure you have all these tests.  

 

i have suffered with chronic constipation primarily due to pelvic floor dysfunction for over 50 years. because of the pelvic floor problems i cannot have a total colectomy but believe me if i could i would have one in a heartbeat!

 

a sitz marker test (colonic transit study) will diagnose colonic inertia. i told my gastro i wanted to take this test and that's how i got my colonic inertia dx. my colonoscopy showed a long and twisted colon.

 

yes you definitely do want to see a good gastro doc--a motility specialist--and/or a good colorectal surgeon. motility specialists are often affiliated with a university hospital. i don't know much about the area where you live but on the AGMD board a lot of people have mentioned going to Temple University Hospital for consultation as well as surgery. and of course there's always the mayo clinic, cleveland clinic and the university of north carolina chapel hill.   you could post a topic on the AGMD board asking for doctor/surgery advice.  it's a very busy board and everyone over there is very supportive and helpful.

 

good luck to you. wishing you all the best.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#3 wigglesmom

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Posted 02 April 2014 - 09:06 AM

I cannot begin to tell you how relieved I am to see you post. I have very similar symptoms and know that most folks do not experience head and back pain with constipation. It is a great relief to find someone who can validate my symptoms. Here is what I am experiencing-it sounds much like what you describe:

 

- a great difficulty having complete evacuations. It tales me at minimum an hour to have a bowel movement, and that is with the aid of at least three suppositories and a variety of supplements/aids the night before (laxative teas, magnesium, Miralax, triphala, prunes, etc.)

- impactions a couple times per month.

- a reliance on a colon hydrotherapist. I get so ill that this is the only treatment that has ever helped me. My hydrotherapist believes that portions of my colon are quite large and that stool collects there. She also believes I have limited peristalsis. Even if I use multiple enemas, I cannot perform that magic that the hydrotherapist does.

- *** Terrible head, neck and upper back pain all on my right side. I have this pain when I am impacted and cannot relieve myself. I know hat this is directly correlated to the constipation as as soon as I visit the hydrotherapist and she removed the stool, the pains either disappear or lessen dramatically. Doctors (I have seen MANY) are perplexed by this and say that there is not way that the pain can be related-I know that it is though.

- I have virtually no anal sensation. The way that I know that I have to use the bathroom is that I get the head, neck and back pain and feel a dull fullness in my lower abdomen.

 

I am wondering if we can communicate more as I am quite desperate to find a solution. It's difficult to get myself into work some days, and I really do not like living like this. I am otherwise healthy-a good weight, active (when I am able), and I eat a vegan diet.

 

I will tell you that I did have some success with castor oil packs as they are reported to reduce bulges in the colon.

Please feel free to contact me.



#4 tummyrumbles

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Posted 02 April 2014 - 09:11 PM

It could be that we have a genetic weakness relating to signalling in the colon and that this is where our constipation stems from. I'm not sure there's a cure for this and whether surgery fixes this. Maybe search for this topic on Google Discussions to get people's honest opinions. I typed in "surgery colon IBS".

 

There's a forum on this here:

 

http://www.ibsgroup....olon-resection/

 

I'm surprised you've only been diagnosed with IBS if your colon is enlarged. It takes me a long time to complete my BMs as well but I'm used to it I suppose. Diet definitely makes a difference and so does eating as early as you can so I think digestion time has a lot to do with constipation as well. I don't take any meds but have 3 cups of tea after breakfast. Apart from that it's just time. You could try having dinner before 6.30 and going to bed early, just for one day, and see if that helps. 


My Wordpress blog: http://ibsnaturalcure.wordpress.com

 

 

 

 

 

 


#5 annie7

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Posted 03 April 2014 - 05:59 AM

wigglesmom--in addition to pelvic floor dysfunction i also have megarectum and rectal hyposensivity as dx'd by both of my anorectal manometry tests.  i know these conditions contribute to my not being able to feel the urge as well as cause me to develop impactions very easily.  i wish there was a way of fixing these conditions but there doesn't seem to be...

 

i get headaches, neck pain and lower back pain when i'm terribly backed up but in my case i think these are caused by stress and muscular tension  from all the pain.

 

it's hard, isn't it. i do hope that somehow you can manage to find some relief. please do take good care of yourself.


these are just my own thoughts. for expert medical advice please contact a health care professional.






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