Should I or Shouldn't I

Wow, I just happen to come across this web site by googling Should I have my colon removed? I was quite surprised to see many others with my problems. In 2001 I was diagnosed with Celiac Disease. This was after many complaints to my doctor and getting nowhere. I dropped 50 lbs in about 2 months and my doctor finally sent me to a gastroenterologist who after doing a s/b biopsy told me I had CD and that he caught it just in time. I had never even heard of it before so I researched the heck out of it. Anyway to make a very long story short my body has been falling apart every since. I have since been diagnosed with IBS, fibromyalgia, migraines, arthritis (which I have had one knee replaced, now it is in both my shoulders). I had a scope done on one shoulder and they tried to clean it out as best as they could but the other problem is that my joints are very loose and my shoulders dislocate a lot. The surgeon is planning on doing a bankart procedure (to tighten my shoulder up and if that works they will do the other one) but that of course won't cure the arthritis. They don't want to do shoulder replacements if they don't have to because they say I am too young. I'm 48. Anyway I also suffer from severe constipation for which the obstructions have been so bad that I couldn't tell you how many NG tubes I have had. All the tests that I have gone through (which by the way I have absolutely no pride left have showed that my colon just does not work). I have been passed around from GI surgeon to GI Surgeon because no one seems to want to deal with my situation. I was finally referred to a Surgeon who explained to me that if they take out my colon and attach my small bowel to the rectum and the rectum doesn't work then they would have to do another operation to put a bag in. So they sent me to do bio-feedback to see if my rectum works. Which according to the technictian seems to be fine. Now I have to go back to the surgeon to see what he recommends. I have been going through this for 4 years now. And I am sick of it. My life has sure changed in these past years and I feel like I'm in my 90's not my 40's. Although everyone always tells me how great I look. If they only knew. So I guess my question is does anyone have any advice for me?
Givenup

By NancyL
Posted April 15, 2009 at 10:27 am
Report post

Hi! Welcome to the site! I am 50 and my colon doesn't work at all either. I thought about having it removed in the begining when i was getting blocked all the time and so misrable. I discovered that if I stick to a liquid/no fiber diet and take miralax, dulcolax and flax seed oil capsules, I can do pretty well. I have gained a bunch of weight and look normal to the rest of the world. And I feel OK when i am good about my diet. But I get really really bored with what I am able to tolerate and I cheat and get sick. Sometimes very sick. And I still have horrible stomach aches from time to time. Almost always it is because I ate the wrong food or too much at one time. I don't know if this is the right course for you or not. But i would explore the option before considering surgery. The surgery I had that started this mess was so huge, so painful, and so hard to recover from, that I will not do surgery agin if there is any way to avoid it. Good Luck and Hang in there!
Nancy

By MINNESOTA
Posted April 15, 2009 at 10:55 am
Report post

HI,
I AM A 56 YEAR OLD MAN WITH GP THAT THROUGH THE YEARS HAS BECOME JUST GENERAL AUTONOMIC NEUROPATHY. I STARTED HAVING PROBLEMS WHEN I CAME HOME AFTER MY FIRST BIG ADVENTURE IN SOUTH EAST ASIA BACK IN 1974, BUT WASN'T DIAGNOSED UNTIL 1989 WHEN I HAD PANCREATITIS. I HAD A J-TUBE FROM 1994-2005. I GOT OFF THE TUBE WITH ZELNORM. THEY TOOK IT OFF THE MARKET IN AMERICA, BUT THERE IS NO LAW AGAINST IT AND YOU CAN ORDER IT FROM A MEXICAN PHARMACY OR ONE FROM INDIA WHERE IT IS STILL MADE. I THINK THAT YOU HAVE HAD ENOUGH SURGERIES TO KNOW THAT THERE IS ALWAYS A DOWNSIDE, DON'T LET THEM DO ANYTHING TO YOUR COLON UNLESS YOUR LIFE DEPENDED ON IT. AND THEN ONLY IF 2 OR 3 DOCTORS WHO DON'T KNOW EACH OTHER AGREE. TAKE CAFFEINE, STOOL SOFTENERS, HOT PEPPERS, GO TO A NATURAL TYPE THERAPIST, OR GO ON LONG WALKS (ABDOMINAL MUSCLES FLEX WITH EACH STEP AND NUDGE THE INTESTINES, THIS HELPS THE STUFF GO AROUND CORNERS IN THE INTESTINES, ESPECIALLY THE COLON), THERE IS A WAY TO MOVE YOUR BOWELS IF THE TISSUE ISN'T DEAD. I KNOW WHAT YOU MEAN ABOUT FEELING LIKE YOUR 90'S, ONE OF MY DOCTORS SAYS I LOOK LIKE I AM IN MY 40'S BUT I FEEL LIKE MY 80'S. I GAINED BACK 50 LBS, WITH THE TUBE, IT WAS INFECTED THE WHOLE 11 YEARS. BACK IN 1995 A FAMOUS HOSPITAL IN MINNESOTA WANTED TO REMOVE MY STOMACH AND INTESTINES TO RELIEVE MY PAIN AND NAUSEA, I SAID NO AND NEVER TALKED TO THAT DOCTOR AGAIN. I FOUND A HOSPICE DOCTOR WHO AGREED TO SEE ME OUTSIDE OF A REGULAR HOSPICE PLAN, I WAS FAILING AFTER 1.5 YEARS ON THE TUBE. THE LOWLY NURSING HOME DOCTOR GOT ME BACK ON TRACK AND I BLOSSOMED UNDER HIS CARE WITH PAIN MEDS AND DRONABINOL. THE BIG SHOTS WERE CONTENT TO WATCH ME SLIP AWAY. KEEP LOOKING FOR A DOCTOR WHO IS WILLING TO TRY NEW THINGS, AVOID SURGERY IS MY 2 ENTS.
M

By givenup
Posted April 15, 2009 at 5:33 pm
Report post

Nancy, thanks for your input. I don't know what to do. I take laxatives every day. Ones that are prescribed to me and ducolax, mirolax, everything and I still can't go. I have tried everything under the sun and because I am Celiac my fiber is very limited. I'm at my wits end. Are you sure I shouldn't opt for the surgery????

By Novagrad
Posted April 15, 2009 at 11:55 pm
Report post

Don't give up. I also feel like a 90 year old - I'm only 37! GI disease often does not show on someone unless you lose a lot of weight, like you and I have. But people still don't understand.

My colon has no motility either. I'm very tired of it. The only thing that works a little is a bowel prep, and even that takes a couple of days to work. But my doctors are more concerned with my gastroparesis and me getting the appropriate nutrition since I'm so underweight. The colon is the last thing on their minds. I often feel like I just want it out but I did see a surgeon who told me that I would need a functioning small bowel in order to have a colonectomy and it now seems as though my small bowel has severe dysmotility too.

Whatever you do, please don't give up. I pray that you will find the right doctor who will guide you in making the best decision for you!

Mimi

By Dominics_Mom
Posted April 16, 2009 at 5:20 am
Report post

If it were me I would find a really good GI doc who has expertise in motility disorders before doing anything drastic. Certain tests, such as manometry, can help in determining the extent of the disease, which medications may help, and what, if any surgical procedures could be helpful. There are some fantastic docs here in the U.S that you could find out about via this site but I know you live in Canada and I don't have any familiarity with what's available there in this regard.

We'll be hoping and praying for you!

By LizAA
Posted April 16, 2009 at 12:03 pm
Report post

I agree with Dominic's mom. Have the tests to find out if the entire colon is not functional if you haven't already. If some of the colon is working, you can have part of the colon removed, and the other part remain to continue functioning.
Liz

By jamessmith
Posted April 18, 2009 at 12:55 pm
Report post

There is a small amount of research that external electrical stimulation therapy can stimulate the colon. Most of the research is in children, but perhaps it might work in adults and I have not seen any adverse reports. I have copied a recent abstract re this. if you go on www.pubmed.gov you can search for more articles. Bridget Southwell has written several articles.

I considered trying this for my daughter who has a motiliy disorder including severe constipation, but she has gotten a excellant response to Zelnorm and fortunately we have been able to continue obtaining it.

1: J Pediatr Surg. 2009 Feb;44(2):408-12.Click here to read Links
Decreased colonic transit time after transcutaneous interferential electrical stimulation in children with slow transit constipation.
Clarke MC, Chase JW, Gibb S, Robertson VJ, Catto-Smith A, Hutson JM, Southwell BR.

Department of Surgical Research, Royal Children's Hospital, Melbourne, Victoria 3052, Australia.

PURPOSE: Idiopathic slow transit constipation (STC) describes a clinical syndrome characterised by intractable constipation. It is diagnosed by demonstrating delayed colonic transit on nuclear transit studies (NTS). A possible new treatment is interferential therapy (IFT), which is a form of electrical stimulation that involves the transcutaneous application of electrical current. This study aimed to ascertain the effect of IFT on colonic transit time. METHODS: Children with STC diagnosed by NTS were randomised to receive either 12 real or placebo IFT sessions for a 4-week period. After a 2-month break, they all received 12 real IFT sessions-again for a 4-week period. A NTS was repeated 6 to 8 weeks after cessation of each treatment period where able. Geometric centres (GCs) of activity were calculated for all studies at 6, 24, 30, and 48 hours. Pretreatment and posttreatment GCs were compared by statistical parametric analysis (paired t test). RESULTS: Thirty-one pretreatment, 22 postreal IFT, and 8 postplacebo IFT studies were identified in 26 children (mean age, 12.7 years; 16 male). Colonic transit was significantly faster in children given real treatment when compared to their pretreatment NTS at 24 (mean CG, 2.39 vs 3.04; P < or = .0001), 30 (mean GC, 2.79 vs 3.47; P = .0039), and 48 (mean GC, 3.34 vs 4.32; P = .0001) hours. By contrast, those children who received placebo IFT had no significant change in colonic transit. CONCLUSIONS: Transcutaneous electrical stimulation with interferential therapy can significantly speed up colonic transit in child

By RickeyF
Posted May 6, 2009 at 9:56 pm
Report post

I had my entire colon removed at birth because back in 1977 doctors weren't that familiar with my condition. In 1997 I had a portion of my small intestine removed. I do have trouble keeping weight on but I try to stay around 125, however if I get sick, my weight drops very fast and I can't put it back on that quick.

Rickey

By givenup
Posted May 13, 2009 at 8:05 am
Report post

Hi Rickey,
Thanks for sharing your story. I have been dealing with this for 5 years and I am very limited to what I can do. This is why I am thinking that the surgery might be a good option for me. I have taken every test imaginable and I see the surgeon on June 4 to get the test results and to see what they are going to do. Wish me luck.
Tammy

By RickeyF
Posted May 13, 2009 at 8:41 am
Report post

Hi Tammy,

I hope everything goes well with your doctors appointment. I realize this is a tough decision to make. Fortunately for me, I didn't have to make this decision. Back in 1977, the doctors basically told my parents they need to remove it all or I may not live much longer. Today, those same doctors are very surprised how I have been able to live a normal life.

Rickey

By givenup
Posted June 2, 2009 at 2:39 pm
Report post

Well, Thursday is my appointment with the surgeon. I hope he can help me. I don't think I can live like this much longer. I'm in enough pain with the migraines, fibromyalgia, arthritis and ..and..and..
Wish me luck!

By givenup
Posted June 7, 2009 at 8:42 pm
Report post

Well it looks like I'm having my colon removed. My visit with the surgeon last thursday was to go over all my tests and because my colon doesn't work and colon cancer runs in the family and I have already had cancer once before (not in the colon). It was suggested that this be the best thing to do. Don't know when yet but I'm sure it will be in the next few months.

By sticks585
Posted October 4, 2009 at 10:34 pm
Report post

I just joined this board and our stories are pretty parallel. I had an appt with a surgeon and we came to the same conclusion. The pain and cramp to the life (no pun intended) is hard to explain and for others to understand unless they experience it. Did you have your surgery yet? Mine will be next month somtime

By prayer
Posted October 5, 2009 at 4:40 pm
Report post

Hi, I don't know where you live but if you are near Wisconsin let me know and I will give you the name of someone that might be able to help you. Any surgery is major and no guarantee.

By givenup
Posted October 6, 2009 at 5:10 pm
Report post

No I don't live in Wisconsin, I live in Ontario Canada.
I have gone through so many tests and so many doctors and so many different alternatives, I am finally on a surgical list of a surgeon that only does this kind of surgery and has a very good reputation.

By sticks585
Posted October 7, 2009 at 9:43 am
Report post

I'm just across the lake in Rochester. Do you know when your surgery is going to be yet? Mine is going to be in Nov, but am waiting for the date.

By prayer
Posted October 7, 2009 at 5:22 pm
Report post

I really hope things go well for you. Just don't have high expectations of a quick recovery. It takes time to recover from any gut surgery. May God bless you and good luck.

By heppy
Posted October 7, 2009 at 11:50 pm
Report post

are you sure you want that? Not that I don't blame you, i have cd, and it is a horror, and I would love my colon to come out, but some part of me, says NO!and I continue to take magnesium citrite (a laxative), and put up with feeling horrible....
If you go that route, see if it can be reversed if possible.

heppy

Welcome to Inspire!

Explore topics in this discussion:

27 replies

Add to the discussion

AGMD on Twitter

Group leaders

You