Sunday 9 January 2011

GI Joe!...the unrelentless gastric EDS soldier

Gastroenterology is a word that many with EDS become fluent in rolling off their tongues. Secondary to joint instability, the digestive system can be the most problematic system in the EDS body for some.
It is now becoming more accepted amongst the sceptic medics that EDS, or Hypermobility Syndrome is more than just 'being bendy' because of this increased awareness of the severity of GI complications in EDS patients.

The GI system, or digestive tract, is one long tube made up of lots of rings of muscle. You put food in your mouth, chew then swallow. The food enters this tube of muscular rings where it is squeezed down the tube by the muscles contracting in turn. It is kind of like when you are trying to squeeze the last blob of toothpaste out of a tube.
In an EDS affected digestive tract the muscles loose their tightness as the collagen breaks down. When they do squeeze they don't do so enough to push the food along. The food then is then simple passed through the system too slowly. In extreme cases the system may not be able to move, or function enough to tolerate solid foods.

When food reaches the stomach it can take an EDS stomach longer to do its job or it can not work as well by thinking it is already full. This causes mixed signals so that the person thinks they are full or is unable to eat decent amounts of food. It can also take the stomach longer to empty. The top of the stomach might not close properly making the contents come back up into the oesophagus or the stomach (reflus) or in extreme cases, fails completely and is unable to digest solid food at all. In this case it is sometimes necessary for the person to have a PEG or GI tube fitted so they can be fed directly into their stomach.

When the food finally leaves the stomach it enters the small and large intestine (or bowel). Here it is passed along using the same muscular method. This time squeezing the food along while digesting absorbs nutrients and water and turns the food into stools (faeces) ready to be eliminated from the body.
In someone with EDS that affects this part of the system, the muscle weakness can cause slow transit, constipation, ibs, cramps, pain, and in severe cases the bowel can become unable to move the waste along at all. Finally the rectum and anal muscles can be affected which can cause incontinence or inability to expel stools.
In the severe end of the lower GI symptoms the results can lead to the person requiring irrigation treatment (inserting catheters into the rectum to fill the bowel with water to flush the lower GI system. When the top part of the lower GI system becomes affected the irrigation is sometimes done through a tube that is surgically inserted through the upper adomen wall). If irrigation fails then the bowel is removed and a stoma (colostomy/illiostomy) is placed. This is in rare circumstances when the bowel no longer functions at all.
Usually if a person is affected badly in their lower GI system they may require very large doses of regular laxatives.

Other GI issues not caused by muscle weakness in EDS can include fool allergies an intolerances, hiatus hernia (where the stomach comes up into the chest cavity), pelvic organ prolapse (where parts of the pelvic organs including the bowel collapse into the pelvic floor), rectum prolapse (part of the bowel falls out of the body through the anus), severe and chronic acid reflux, constant nausea and vomiting.

The majority of people with EDS who have GI problems will only have the milder end of symptoms that can be managed with diet or medication. However it is becoming more recognised now that the GI problems that were once thought to be unrelated are caused by EDS or the Autonomic Dysfunction that EDS patients also tend to have.

I have always have lower GI problems since birth. I suffered from slow transit and a number of impacted bowels as a child.
I have been using irrigation treatment for over a year now which is no longer really effective. My bowel has started to collapse in areas which causes immense pain and blockages that make the irrigation even less effective.

I was very lucky to meet a neurogastoentologist who has taken an interest in EDS patients. He believed at the time that the upper abdomen tube to irrigate through could be an option before bowel removal however it has taken nearly 6 months to convince my GP to refer me to him. My lower GI problems are much worse now but I hope that this is still an option by the time I finally get to his clinic.

I also have upper GI problems now. Mainly I have no appetite now. When I do force myself to eat I can only manage very small amounts and the food takes its time getting down into my stomach. I sometimes have a hard time swallowing and can feel and hear 'clunking' in my oesophagus when I have to gently squeeze and rub my neck to encourage the food down.

I had an endoscopy last week to check for anything none-EDS. I am very scared of my upper GI system failing in the way my lower system hasso I was hoping they would find something non-EDS that is easy to treat. However all they found was some inflammation in my stomach which could be caused by a bacteria they also found. Neither of which would cause my symptoms.
It looks likely that my upper GI symptoms are EDS, particually muscle weakness.

I have a couple of friends with EDS who have serious GI problems. One has the hypermobile form of the condition like me, the other has the vascular. Both have feeding tubes and have had their bowel removed.
I have lots of other eds friends who have GI problems but none have got to needing irrigation treatment or it failing like me.
It does worry me that I may be coming close to the end of the line with options in terms of what can be done for my GI problems.

This issue of my blog was intended to raise awareness of just SOME of the GI issues that can happen with EDS. I hope that it has helped others understand just how serious this part of the condition can get and encourage those with EDS who are experiencing GI problems to look into this area and ensure that your Dr understands that your GI issues could be due to your EDS and should not be ignored.

7 comments:

  1. Hi Carrie,

    Thank you SO much for the information you blogged above...you may have finally been the person to explain to me what the HECK is going wrong with my colostomy. Yes, I said with my colostomy! I already have a colostomy due first complete loss of control over my bowels (most likely neuro complications from my very deteriorated lumbar spine, due to EDS). This was followed by a rectal prolapse (yep, EDS strikes again), at which point I went to a surgeon. He suggested a colostomy as a means of much more comfortably managing stool. And wearing a colostomy bag IS much better than wearing a diaper and having it fill without your even realizing it, and wherever you might be. Colostomy bags are designed to control odor a lot more than diapers and while not perfect, do a pretty good job. But here is where your blog helped me: a couple of mos after having the colostomy surgery I began to have intermittent problems where my ostomy would prolapse and I would be unable to pass solid stool. My surgeon had no clue as to what was going on or why. It finally got to the point where the only way I can pass solid stool is by irrigation. I was particularly bothered by this because I did not know WHY this was happening. I didn't think I had a motility problem, since the food I ate seemed to pass along at a normal rate, but then wouldn't come out when it got toward the ostomy end. What your blog pointed out for me is that different areas of the bowel may be affected while others may not. I did see a gastroenterologist today who had me have a barium enema to rule out other causes and nothing was found to explain why the stool just won't come on out once it gets to the inside of the stoma. I have noticed there is a lack of the sensation of cramping one would expect under such circumstances, and I think what you have described would explain that. At the same time that this problem was developing I was also gradually developing orthostatic hypotension and some other ANS problems. Anyway, the good doctor I saw today very simply came up with the correct assessment without even having had any prior experience with pts with EDS. he told me that if I want, he can perform surgery to change my colostomy to an ileostomy, meaning he would remove what is left of my large bowel, leaving me with only small bowel--since the small bowel holds ONLY liquid stool, this should hopefully pass with no problems. I told him I probably will defer such surgery right now, but will reconsider it if my problems continue to get worse and I start having more problems even with irrigation.
    I do want to say that my adjustment to having a colostomy was very very easy. I guess when you wear diapers and your rectum falls out, why wouldn't you want a colostomy?
    Thanks again for helping me figure out what in the world is wrong with my colostomy/bowel. Hope you have been able to find help with your problems as well.

    ReplyDelete
    Replies
    1. My GI dr has said that a colostomy isnt possible for me because if you have small bowel dysmotility operating on the large bowel can make the small bowel worse. It makes sense becuase a few of my friends who have gone on to have colostomies have developed further problems with their small bowel.
      Although a colostomy would solve my problems with my large bowel its not worth the risk for me. If i get to the point with my stomach where I need a feeding tube then i need my small bowel to be functioning as much as possible.

      Delete
  2. Hello I have EDS hypermobility and m.e, I have been researching as I have now been getting bad heartburn, been sick once without having a bug or anything but my stomach couldn't seem to take my food and gave just up that night...felt so much more comfortable afterwards! And acid reflux (I think reflux is what its called) but I was wanting a tube fitted really so its better monitored and easier for me, more comfortable and its not as hard work for my CFS/m.e but how would I be able to ask my doctor for something like that how did you get yours fitted and your friends as I don't want to wait for my symptoms to get worse but to try and help it and get it done before I start starving myself again because its too horrible to eat x thank you x

    ReplyDelete
    Replies
    1. Hi Locky
      A feeding tube is something that should only be considered when absolutely nessesary. Once you have a feeding tube you tend to have regular problems with tube blockages, needing tubes replaced and further deteriation of other GI problems. It can also be harder to absorb nutrients which causes more problems overall.
      If you are having regular problems eating and being sick then ask your dr for a gastric emptying test. This will show if your stomach isnt emptying properly. If your stomach is emptying ok and you are still haveing problems then there are medications that can help with the nausea and vomiting.

      Delete
  3. Hello I have EDS hypermobility and m.e, I have been researching as I have now been getting bad heartburn, been sick once without having a bug or anything but my stomach couldn't seem to take my food and gave just up that night...felt so much more comfortable afterwards! And acid reflux (I think reflux is what its called) but I was wanting a tube fitted really so its better monitored and easier for me, more comfortable and its not as hard work for my CFS/m.e but how would I be able to ask my doctor for something like that how did you get yours fitted and your friends as I don't want to wait for my symptoms to get worse but to try and help it and get it done before I start starving myself again because its too horrible to eat x thank you x

    ReplyDelete
  4. hey Carrie i am Katheryn Lyons from Australia i have alot of your problems as well and you are the only person i have found who relates, i understand fully what you go though the doctors are still questioning if i have pots or not, but i had the same problems as you as i child with medical with needing a speech therapist but a few other issues, i have Marfans with Eds with hyper mobility and there still trying to work out if i have pots or not, i find it hard to talk and thank you for the tips of the lozenges i am going to try it, i really would like to get in contact with you and i love to sing as well i write songs and books and am trying to start my own business with children s books, please i would love to talk to you as i understand fully what you go though, day by day i understand dim all so in a wheel chair and have been for a while now i would fatigue as a child and need one as well back then, my bones twisted during puberty tho so my knees were at the back of my legs, i have had surgeries but the did not work, i would love to as i have said get in contact with you Carrie, please add me on Skype or msn if you have one of them my msn is, tigerlilly442@hotmail.com and my Skype is Apoetsdream442 please add me Carrie as i really want to talk i have been looking for ages and so happy when i found you - hugs- please and thank you for reading this if you do ^_^

    ReplyDelete
  5. hi i was wondering about how old you were when the slow transit in your bowels began as my daughter had this when she turned age and it went on to age 7, it has now stopped. she has hypermobility and i need to get her a doctors appt to see if she has EDS

    ReplyDelete