Probiotics after a total colectomy?

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I'd Rather Be Riding
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Date Joined Apr 2010
Total Posts : 149
   Posted 4/16/2010 5:42 PM (GMT -6)   
Hi all! I'm new at this whole posting business...
 
I had a total colectomy in November of 2007 at the age of 21 to treat colonic inertia. I do not have an ostomy. Life is still extremely complicated, as I have a ton of motility problems with my small intestine. We're talking altered life plans, highly restricted diet (ex: my system doesn't even tolerate applesauce), tons of pain, being sidelined from my favorite sport, etc. Life post-op is definitely much better than life before surgery, but it's still not much of a life. 
 
My question: is it safe/helpful/a good idea to take probiotics after a total colectomy? I can't find much on the subject through PubMed, or anywhere else for that matter. I know the small intestine isn't supposed to have very much bacteria in it, and I don't know if taking probiotics would be like trying to force my small intestine to act like a large intestine. On the other hand, probiotics help to combat SIBO and candida. Any thoughts? Has anyone had a similar experience?

finallyfree
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Date Joined Aug 2008
Total Posts : 470
   Posted 4/16/2010 7:17 PM (GMT -6)   
Hi Riding & Welcome to the site!  I had a subtotal in 7/08 and my gi has had me take probiotics for the past year.  I wasn't on them to begin with but then I contracted a severe case of c difficile infection and every since my dr has me take two different probiotics.  I know many drs have said it is especially important to take them if you are on any antibiotics.  I take them as well as eat 2 yogurts containing pre & probiotics everyday.
 
Hope this helps.
Judy
 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


suebear
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Date Joined Feb 2006
Total Posts : 5690
   Posted 4/17/2010 7:42 AM (GMT -6)   
I have been taking probiotics for around 35 years. Took them before my proctocolectomy and have been taking them ever since. If you start taking them you might noticed increased gas but that will go away once you get accustomed to them.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


I'd Rather Be Riding
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Date Joined Apr 2010
Total Posts : 149
   Posted 4/17/2010 10:55 AM (GMT -6)   
Thanks, Ladies!

I do currently take probiotics; not in a pill form, but they are mixed into the protein powder that I use (Vega Health Optimizer by Sequel Naturals*). It's definitely tricky- I can't tolerate dairy, soy (or any probiotics cultured in those mediums), legumes, potatoes (yams are becoming more of a problem), grains are a nightmare...the list goes on!

I'm not on any medications. The MD/PhDs of the world haven't concocted any meds that will help me yet. Despite having a total colectomy, the motility in my small intestine is still 10x slower than a normal person who still has a colon.

Sue, how did the Specific Carbohydrate Diet work for you? Any relief?

*I'm not a vegan or vegetarian, but this seems to be the only protein powder that my system will tolerate. I used to use egg white powder, but now that just burns the whole way through.
 
Allie

suebear
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Date Joined Feb 2006
Total Posts : 5690
   Posted 4/17/2010 11:02 AM (GMT -6)   
Allie,

No, the SCD diet did nothing for me!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 4/17/2010 11:58 AM (GMT -6)   
Sue, I'm sorry to hear that. It sounds great, in theory. I'm thinking about giving it a whirl because I would only have to make a slight change to what I'm eating now, but there are foods on the SCD "good" list that are definitely on my "bad" list!

I guess there's a reason the docs at Mayo call the GI tract the "second brain"...sooo complicated.
 
Allie


According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...
 
July 2007: Diagnosed with colonic inertia at the Mayo Clinic
November 2007: Total colectomy
Post-op: Much better, but I still have chronic debilitating pain (small intestine dysmotility)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise.
 
 


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/17/2010 3:54 PM (GMT -6)   
Hi Allie,

I have small bowel dysmotility, too. I had a total colectomy with creation of an ileostomy 1.5 years ago which finally helped my horrible constipation and most severe pain. However, due to my small bowel and stomach dysmotility I can't eat like a normal person and normal amounts. Eating has become better and easier which was connected with severe pain and nausea before but ist is still not normal and difficult.

I have dysmotility throughout my entire GI system including stomach, small bowel and the removed colon plus the rectal stump (that's the reason I have a bag that can't be reversed; small bowel can't be reconnected to the rectal stump cause it is acting like an obstrcution istelf due to the rectal spasms/dysmotility). In addition I can't empty my bladder by my own so that I have a permanent catheter through the abdominal wall. Nonetheless I have still bladder spasms and pain.

i had a nasal feeding tube to support my nutrition sicne I was finally very underweight but this failed. Since October I have had intravenous feedings in addition to whta I can eat orally. SIBO is a big issue for me too although I lack the colon. However I have found that my gut doesn't tolerate probiotics, it just does not accept the right bacteria.

Do you have problems with your bladder? Which symptoms did you have prior to surgery and which have been persisiting/do you still have afterwards? How have you been diagnsoed withs mall bowel dysmotility and was it prior or after your colectomy?
After many false diagnoses I got the dignosis of CI but after two colon resections that left me with nearly no colon and failed I had to go to Italy (I am German) to get the diagnosis of chronic intestinal pseudoobstrcution (just another term for general severe dysmotility).I was accused of having an eating disorder before several times.

Are you nutritionally totally independent or do you get some kind of nutrional support?
Do you think that your condition/small bowel dysmotility has progressed since colectomy?
Do you still get obstrcutions due to the impaired motility?

I am curious to read more from you!
SArah

Post Edited (pelztier86) : 4/17/2010 5:20:58 PM (GMT-6)


I'd Rather Be Riding
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Date Joined Apr 2010
Total Posts : 149
   Posted 4/17/2010 11:00 PM (GMT -6)   
Hi Sarah,

Wow, do we have similar stories!

I have dysmotility throughout my entire GI tract, too. My stomach alternates between emptying too fast and not emptying at all. My small bowel moves extremely slow, and my colon didn't move at all. My gastroenterologist at the Mayo Clinic (amazing doctor...you should see him) described it as civil war. When the stomach empties too quickly, food comes to a screeching halt when it hits a non-motile small intestine, and the result is bloating, constipation, and lots of pain (I'm sure you're very familiar with all of those).

I am extremely volume intolerant when it comes to food, so I have to eat very small meals. I really cannot eat normally, either. On top of that, I have to be very careful of the amounts of fat that I take in at any one time; my gut will completely shut down if I eat too much fat at one meal. Omega-3s tend to go pretty well, though. I use Carlson's MedOmega Fish Oil 2800- it's a concentrated formula. Eating is always a battle. I am never hungry! I honestly have to eat by the clock because I wouldn't otherwise. I can't eat any form of dairy, soy, red meat; grains are occasionally okay, fruits are okay for the most part, and all veggies have to be well steamed and easy to digest.

I have always had GI issues, but things got really bad in 2004. I was 18, and had just started college. It took almost four years to get an accurate diagnosis because all the bloodwork, biopsies, etc. came back normal. The only tests that came back with abnormal results were the motility studies (I can explain those tests if you want). They showed dysmotilities in the stomach, small bowel, and colon (we knew that I had dysmotilities in all three areas before surgery). Several doctors wrote that off as the result of an eating disorder. They felt my motility would return to normal when I started eating again. I was not starving myself, and I was not making myself throw up, but when a doctor looks at a college-age girl who is 5'7" and weighs 85 pounds, I guess that's the first conclusion they jump to. I literally couldn't eat- it hurt too much!

I did not have any feeding tubes, although they were considered. While I was recovering from surgery, they did put in a PICC (big IV) line to give me total parenteral nutrition. I am currently nutritionally independent, but underweight. I used to ride horses competitively, but I haven't ridden in five years due to pain and the amount of muscle that I've lost to wasting.

I don't think that probiotics do much for me, and I have tried some that really caused a lot of pain and made my motility problems worse. I have problems with SIBO also, and I recently started taking Kyolic Digestion Formula. It's an aged garlic supplement with digestive enzymes. Garlic is a potent antibiotic and antifungal, but it doesn't wipe out the good bacteria like antibiotics do. I haven't been on it very long, so I don't have much to report yet on its efficacy. No disastrous effects, though. Hopefully it will stay that way. I also add glutamine powder to my morning smoothie every day. Glutamine is an amino acid that is the main fuel source for the GI tract. Amino acids are classified as essential and non-essential. Essential amino acids must be obtained through the diet, and non-essential (aka: conditionally essential) amino acids are produced by the body. Glutamine is produced by the body, but in people with GI problems, it becomes necessary to add a supplement because the body may not be producing enough.

I do have sensation problems with my bladder and rectum. I really don't get the sensation that I have to go to the bathroom. If I press on my lower abdomen right above the pubic bone, I will feel the sensation that I have to empty my bladder, but that signal doesn't fire on its own. When it comes to the rectum, again, I don't really get the sensation that I have to go- I just get a lot of abdominal pain. The motility and bladder issues have gotten worse since surgery. It's not the surgery's fault (the total colectomy saved my life). Honestly, I think this is a progressive disease that we haven't gotten to the bottom of yet. According to my gastroenterologist here at home (Texas), I haven't had any full-blown obstructions due to any intestinal twists, but pseudoobstructions, yes.

Instead of a nasogastric feeding tube, would a J-tube be a better fit? I know that's a surgical procedure- a tube is placed in the beginning of the small intestine (the jejunum), so the stomach is bypassed.

Looking forward to hearing more from you as well!

Allie
According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...
 
July 2007: Diagnosed with colonic inertia at the Mayo Clinic
November 2007: Total colectomy
Post-op: Much better, but I still have chronic debilitating pain (small intestine dysmotility)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise.
 
 


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/18/2010 5:34 PM (GMT -6)   
Hi Allie,

nice to hear from you. I am bit at a hurry right now...but I will answer you more in detail if you would like to know more. I have had digestive issues my entire life but it was just labeld as lazy gut, in my youth when symptoms got worse it was IBS since all the normal tests I underwent (colonoscopy) etc were quite normal, at least what the docs consider as normal...looking back there were some hints that something was not right: my colon was way too long and very loopy but that was just nature, a play of anatomy without any value.
Basically the problem here in Germany is that motility issues are not known and that there are no tests to diagnose them. Only very rarely a gastric emptying test can be performed (I know one facility, that's all and it is rather on a background of cancer patients, anatomical problems causing slow stomach emptying rather than a functional problem).
In just underwent the wrong tests you can't diagnose motility issues. That's why these tests were all normal, and my issues were considered psychosomatic and finally I was acuused of having an eating disorder several times by renowned hospitals. I still struggle with this medical history and reports from that time.

I was diagnsoed by the Italian expert. I had x-rays showing meteoric disension of the small bowel and air-fluid levels in the lower abdomen indicating a chronic subocclusive state. I had a subileus right before my staying in Italy.
In Bologna/Italy I had a gastric emptying test which showed markedly delayed gastric emptying and a small bowel manometry.
Do you know if your dysmotility is caused by dysfunctioning nerves or muscles (neurogenic vs. myopathic form)?
My colon was most affected by the disease, even the little part that had remained were too much.

Do you still have constipation issues or did the colectomy erase this problem?
With my ileostomy I alterate between loose ouput caused by SIBO and thick, little ouptut. I am better in times of SIBO since then the transit is accelerated through my small bowel.
Do you feel better or worse when you have SIBO? I think I constantly have some kind of SIBO but then there are bouts of it and that is when I get loose output.
Have you thought of getting an ileostomy since rectal dysmotility can worsen small bowel dysmotility?

What did your docs say prior to your colectomy since normally most docs won't consider colectomy when there is evidence of a general dysmotility problem?

Which tests did you have? Did you have a small bowel manometry or a whole gut scintigraphy?
How do you knwo that your stomach alters between rapid and slow emptying?

Do you know what your small bowel transit time is (for example measured by a transit study or according to your own observations)?

Do you feel that the coleoctomy may have accelerated the deterioration process of your small bowel?

What do you do in terms of education/career? I have a very hard time to imagine my future in this way. My bladder problem is severe and I have had several infections of my hickman catheter subsequently to UTIs and the bladder catheter. My only option would be surgery of the bladder but it is very hard to find an urologist who is willing to perform this surgery in my case where experinces lack.

Sarah

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/18/2010 5:38 PM (GMT -6)   
Oh, and in the past 3 years I have had numerous hospital stayings due to various reasons. In the last 1.5 months I have been in the hospital three times (in total three weeks) due to infecton of my hickman catheter which means iv-antibiotics through the peripheral veins which is an ordeal for my ( I have very bad veins).

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 4/18/2010 11:47 PM (GMT -6)   
Hi Sarah,

My colon was way too long as well. One of the Mayo docs and my surgeon both called it "long and torturous."

Wow. I'm really sorry to hear that it is so hard to get adequate testing done in Germany. There is an entire research center at the Mayo Clinic that focuses on motility disorders and enteric neurology. If you are ever able to make it over to the States, go to the Mayo Clinic in Rochester, Minnesota. Dr. Michael Camilleri is pretty much the foremost authority on motility disorders in the US, if not the world. He is the head of the Clinical Enteric Neuroscience Translational and Epidemiological Research (CENTER) Program (http://mayoresearch.mayo.edu/mayo/research/ensp/index.cfm). His credentials are here: http://www.mayoclinic.org/bio/10289402.html; and his research interests are here: http://mayoresearch.mayo.edu/mayo/research/staff/camilleri_m.cfm. Mayo was the best experience of my life, despite all of the poking and tests that went on. I really hope I can go back there soon because they are the only ones who are making any headway on researching and treating motility disorders. The first time I met Dr. Camilleri, he came into the exam room, sat down, looked me straight in the eye, and said, "We will find what is wrong. I hate to see young people suffer."

I know it's hard to have an ignorant doctor place an eating disorder label on you. But, if you are ever able to see Dr. Camilleri, he will look beyond that. He did for me. After he reviewed my test results and listened to what I had to say, he said, "Well, I don't think you have an eating disorder. You are clearly in a lot of pain."

I'm pretty sure my dysmotility is neurogenic. I also have numbness and tingling in my hands, down my left thigh, burning nerve pain that shoots all around my abdomen and back, and rectal nerve pain that feels like a lightning rod...it's really not pleasant.

Constipation is a huge problem for me. The total colectomy definitely helped, but the motility in my small intestine is so slow that food just sits in there. My transit time is longer that someone who still has a colon. I definitely feel worse with SIBO. The second I eat anything, I get a massive amount of bloating, so adding SIBO on top of that makes it worse. The bloating is extremely painful.

An ileostomy isn't really an option for me because it wouldn't help my small bowl dysmotility. Regardless of whether my small bowel is anastomosed to my rectum, or whether they went back in and did an ostomy, the small bowel moves so slow that I will have very slow transit either way.

You're absolutely right! No doctor will do a colectomy on a 21 year old unless they have a life-or-death case of UC. I had my surgery here in Dallas with Dr. Clifford Simmang. He is one of the best colorectal surgeons in the country. When I had a consult with him, the only reason he would consider doing a colectomy is because of all the testing I had done at Mayo, and Dr. Camilleri's suspicion that a colectomy might be the only option. Dr. Simmang looked over all the tests and Dr. Camilleri's notes, and he truly felt that a colectomy was the best option for me. A total colectomy was the last resort, and we were definitely at that point.

I've had so many tests that I'm not sure I remember them all. I had several gastric emptying studies, several transit studies that look at how fast/slow food moves through the entire GI tract (those tests take a couple of days because they have to take pictures at regular intervals to trace the location of the radioactive isotope and markers), barium swallow studies, a couple of colonoscopies, a sigmoidoscopy, anorectal manometry, and a colonic motility test. My small bowel transit time can be 24 hours or more (so painful). If you want me to explain how any of those tests work, just let me know.

I don't think that the colectomy accelerated the deterioration of my small bowel. I think my colon was in such bad shape that I really wasn't aware of how bad my small bowel really was. The motility in my small bowel is definitely deteriorating rather quickly, though.

I completely understand. I don't see myself having much of a future, either- it's so disappointing- I really wanted to travel, see the world, and go on mission trips. I have been riding horses since I was 7 (I'm now 24). Before things got really bad, I was studying equine science at Colorado State University. My goal was to complete graduate work in reproductive physiology and have a career in the breeding side of the horse industry. I had to give all of that up. I just finished my bachelor's degree in speech and hearing sciences a couple months ago. I am hoping to get a master's degree in prosthetics, but because of my health, the likelihood of that option is looking bleak. At this point, I don't have the stamina or the strength to successfully complete graduate work. So, right now, I'm thinking about getting my teaching credentials to teach science or special education. Teachers get breaks for Thanksgiving, Christmas, and a couple months off for the summer, so I wouldn't be working year-round. How about you? What do you do for education/career? Have you had to change careers to accommodate your health problems?

What kind of surgery would they have to do on your bladder? I'm so sorry to hear about your recent hospital stays. Do they know why the catheter keeps getting infected? Are there different types of catheters, or a different location they could try? Are they using the catheter for nutrition purposes? Have you found any supplements or medications that help your motility problems?

Allie
According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...
 
July 2007: Diagnosed with colonic inertia at the Mayo Clinic
November 2007: Total colectomy
Post-op: Much better, but I still have chronic debilitating pain (small intestine dysmotility)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise.
 
 


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/19/2010 5:40 PM (GMT -6)   
Thanks for sharing your expereinces wit me.

So you think that the progression ofthe condition in your small bowel is faster than it took place in the colon before colectomy? I have once read that dysmotility of the colon takes some time to reach its severity (so the younger you are the more severe the (nerve) damage is; most CI patients manage to get in their 40s before things are that bad that they opt for surgery) whereas if the dysmotility in the small bowel has once started then it deteriorates faster. Probably due to its different anatomy, colon can store huge amounts of stools.

When did you start to have problems and when did they became severe?

if I had an ileorectal anastomosis I would have horrible constipation just because of the rectal dysmotility/obstrcution on top of the small bowel dysmotility. So maybe an ileostomy (if you don't bother having a bag but my opinion is everything that reduces pain is very welcomed and a bag is really not that bad at all) would be an option for you to erase the rectal problem that seems to be quite severe. Your procedure for empyting the rectum seems to be similar to my suffering was. I had horrible rectal spasms that did not let anything out even if it had finally made to the rectum.
Although my rectum is disconnected with the small bowel I have still problems with it since I can't get the mucus out that is still produced. This results in chronic inflammation and rectal spasms if I don't let the rectum be flushed which is very painful.

My small bowel transit is slow too, but nontheless the rectal obstrcution would definitely intensify this problem massively. Normally, with your colon teh pressure that is build up by the rectal obstrcution goes into the colon which is able to handle the pressure better than the small bowel due to its greater capacity and storage function and the ileocecal valve which protects the small bowel.
There are studies with children with CIP that confirms that although all of them suffered from severe smnall bowel dysmotility all were better with an ileostomy. When the ostomies were closed they were much worse and constantly got obstructions. WHen they got the ostomy back they were still ill and had pain etc but there was an improvement in the severity of symptoms and the possibility of eating. They all still had a very irregular output ranging from non-existing output (constipation) altering with massive output which is clearly a consequence of the small bowel dysmotility.


Lately I have developed neuropathic pain in my feet and hands. I am worrying about a possible development of an autoimmune-disorder or auto-neuropathy. Have you been eveluated for these things? (lupus, scleroderma etc?)

I have been not able to do anything career-wise since 2006. I managed to do my second grade and a half year later I expereinced a severe deterioration of my symptoms.
At the moment I don't have strenght and stamina to even think of a goal or a profession/education I could be interested in. Like you I always wanted to travel, see different placed and cultures, studying languages and cultures, being into arts and drawing.. I can't imagine to do any of this at the moment. My life evolves completely around my boday and making it "work" at least a little bit.

The hickman catheter is for intravenous feedings and in general there is always the option that it gets infected. In my case the frequency of the infections of my hickman catheter is possibly due to the presence of the bladder catheter which is a permanent source for bacteria and makes a permanent little hole in the abdominal wall.
The only option for my bladder problem would be removal of the bladder and replacement of it by a reservoir that is made from bowel segments. But as I said before there are no expereinces iwth this kind of surgery and a small bowel that is affected by dysmotility.

The test you mentioned where the radioactive trace is followed for several days...is this the whole gut scintigraphy?
Did you feel right after the colectomy that your small bowel has a severe dysmotility problem, too, or did you have significant relief at first?
How long did it take time to notice a significant deteriroation if you had significant relief at first?

I haven't found any supplememts to help with motility. You can try to take pancreatic digestive enzymes but in my case I only felt worse with them. You can also try to take high dosis of vitamíne C which promotes diarrhoe in normal people. I take it and I think it helps a little.
Sarah

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/20/2010 4:14 PM (GMT -6)   
oh, and what tyoe of pain do you usually have in yur bowel? I myslef experience two kind of pains: rather steady aching/pressure pain (as if the bowels are getting distended which is exactly they actually do in these situations, they are "overloaded") and sudden spasm that are very intense and are even more severe than the pressure pain although they come and go, in my worst times I got spasms every minute. This was my situation prior to colectomy so I am very gratfeul for my ileostomy and improvement in terms of pain particularly the spasms.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/21/2010 4:58 PM (GMT -6)   
Allie,

I hope I did not ramble too much or told too much about me .... or why are you not posting here any longer while you do write in the colectomy thread where most folks do only have CI?
Hope I have not strained your nerves.
Would be very nice to hear from you.
Sarah

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 4/21/2010 8:32 PM (GMT -6)   
Hi Sarah!

I will reply, I promise! It has been a very heavy exam week at school, so I have been forcing myself to just study. I would much rather be replying to your post than studying for tomorrow's exam. I still have questions for you, too.

You did not share too much (that wouldn't be possible), and I do look forward to continuing this CI/colectomy/dysmotilities everywhere else conversation with you.

I hope to be able to give you a full reply tonight, but it seems like preparing for exams takes a lot longer than it used to. I'm so tired because of the chronic pain, and it seems like my brain just doesn't synapse. If I don't post a reply tonight, I will tomorrow morning as soon as the exam is over. I promise! In the mean time, if you're on facebook, feel free to track me down. Search for "Allie Anderson," and my profile picture shows a girl kneeling in tall grass with a white dog.

I hope you had/are having a good day, and I look forward to talking (posting) with you soon.

Allie
According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...
 
July 2007: Diagnosed with colonic inertia at the Mayo Clinic
November 2007: Total colectomy
Post-op: Much better, but I still have chronic debilitating pain (small intestine dysmotility)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise.
 
 


I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 4/22/2010 12:04 PM (GMT -6)   
Okay, exams for this week are over. I'm back online. :)

Yes, I do think that the progression of my small bowel dysmotility has sped up now that I don't have a colon. I describe it like a flight of stairs- my condition is always getting worse, but sometimes it's a free-fall (the riser portion of the stair), and sometimes it's at a plateau (the step part of the stairs). The motility is always worsening. You're right- most patients do reach 40s-50s before it's bad enough to require surgery, so I do think there is significant nerve damage, however, the cause of it is unknown.

I've had constipation problems my entire life, but they became severe in 2004 (I was 18).

I'm very interested to hear more about your ileostomy. When I was having all of those tests done, I failed the rectal balloon expulsion test miserably. I couldn't get it out. How did your doctors determine that you should have an ostomy? What tests did they run? How did they diagnose your rectal dysmotility? Were you diagnosed with anismus? Did you have an ileorectal anastomosis first, or did they go straight to an ostomy? I am absolutely open to having another surgery and an ostomy and bag. I just want to be out of pain! I would gladly deal with a bag for the rest of my life if an ostomy would allow me to function, because I really have no life right now. It has been a long time since I was able to go enjoy a movie at a theater, hang out with friends, etc. I know you understand the feeling. Is the output from your ostomy consistent, or does it come in waves (sometimes a lot, sometimes very little)? Has the pressure and bloating decreased with the ostomy?

The studies that you reference about the kids with CIP are fascinating. That's really interesting that they were worse when their ostomies were closed. I'm going to keep looking into that. I'm going to see a new gastroenterologist soon, and I hope that he will be really good. He has already said that he will relay all of his findings to Dr. Camilleri so that there will be no problem if I need to go back to Mayo this summer. I love my doctors at Mayo, but they're in Minnesota and I'm in Texas, so I can't just hop on a plane every time I'm in bad shape. I need a good GI doc that's close to home- I've seen so many here in Texas and they all gave up because my problems are so complex. I hope the new doctor will be curious and creative.

Can you describe the pain that you're having in your hands and feet? Is it burning, stabbing, shooting, etc.? I have the same thing in my hands, feet, left thigh, and all over my back. My hands, feet, and thigh get that tingling feeling like when your foot falls asleep. I see a chiropractor, and that has helped the pain in my back, but it hasn't helped the pain anywhere else. I have been tested for every autoimmune disease known to man, and the tests were all negative. It is very important to eliminate those, so please go see a rheumatologist for a full work up. Make sure he/she does tons of blood work because you need to know if you have another disease process going on.

I understand completely. I know it's so hard to have a life that revolves on trying to make your body perform the most elementary of functions. What field is your education in? And, may I ask how old you are? Maybe someday, when we're both healthy and pain free, we should go travel and soak up all of the art, architecture, and culture we want! It's really hard, but I do take a couple of classes at a local university just to keep my brain working. It does help a little to have something that I have to study and assignments that I have to complete. It keeps my mind off the pain a little. It's not much, but it's something.

I'm so sorry your bladder problems are so complex, and that the infections are so persistent. Do they have you on antibiotics all the time?

I was feeling pretty good for about 8-9 months after surgery (surgery was in November 2007). Then things really started to deteriorate, and they have progressed ever since. Yea, I think scintigraphy is the technical name for the whole-gut transit study. They had me swallow a radioactive capsule and eat some scrambled eggs that had been injected with a radioactive isotope. Then they take pictures at regular intervals starting with 30 minutes, then moving it out to one hour, two hours, etc. They stop the test when you start to pass the isotopes. For me, the test went on for days. Everything stopped in my ascending colon and didn't move after that.

Same for me- I felt worse with probiotics and digestive enzymes. Vitamin C didn't work for me either.

The pain in my bowel is a constant, aching pressure pain from the distension. At the same time, I will have sharp spasm pains that can radiate all over my abdomen and back. Sounds like the pain we have is very similar.

Allie
According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...
 
July 2007: Diagnosed with colonic inertia at the Mayo Clinic
November 2007: Total colectomy with ileorectal anastomosis
Post-op: Somewhat better, but I still have chronic debilitating pain (small intestine dysmotility)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise.
 
Psalm 73:26
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/22/2010 5:46 PM (GMT -6)   
Hi Allie,

so sorry for my prejudgement... i didn't notice that you still deal with exams since I am completely out of these things. I did manage to finish school 4 years ago and that was it. So I have no real education beside a second school grade. I am almost 24, and I have had digestive problems my entire life turning severe when I was 19.

I will look for the arctile that deals with the sudies on these kids....

As I mentioned before I have not been diagnosed with a generalized dysmotility/CIP here in Germany. After several false diagnoses that were made throughout my childhood and particularly youth I finally received the diagnosis of CI. I had already expereinced a severe progression/deterioration of my symptoms two years ago, and I barely managed to suffer through this time being accused of having an eating disorder due to the little intake, weight loss etc.
The dignosis of CI were made by two colorectal surgeons since GI docs in Germany who deal with motility issues are not found in Germany. I was very lucke since I casually found my way to them. I was sent by my general docs once again for examining my rectum since I suffered from horrible rectal spasms with blood on top of the motility issue (that time I did not even know the term motility and that there are diseases that cause dysmotility that could be responsible for my slow digestion).
Since they had done surgery on several young ladies before (these cases proved to be much less severe than mine) they suggested the diagnosis of CI. I only had a x-ray barium enema that showed a malrotated, partially dilated, twisted, wlongated and loopy colon and a defecography that proved impaired rectal emptying (partially functional, partially caused by an anatomical problem, a prolapse and rectocele).
Then I underwent my first surgery which involved resection of two third of my colon. After 4 weeks everything was the same ; my remaining colon function deteriorated even faster.

Half a year later I had surgery again to remove the biggest part of the remaining colon leaving me with nearly no colon except for 20cm plus rectum.(subtotal colectomy). The repeated barium enema and the defecography had shown the same picture again.

This surgery did not have any effect even right after the surgery.
This time my surgeons did not believe me any more and said that I suffered now from a psychosomatic issue/secondary eating disorder that had developed subsequently to the long-standing situation before.
Everywhere I went to I could not overcome this suspicion. I was labeled and I did not get any chance. That is why I searched desperately in the internet and found the European expert (by the way he has worked with Camilleri before at Mayo) who was very friendly and invited me to Italy to do further special testing which is unavailable here.

I have never been particularly diagnosed with anismus, the severity of rectal dysmotility proved by itself. Since I knew by my own expereinces how severe my rectal dysmotility was (I had a rectal tube to release the gas that accumulated in the rectum; I could'nt even expel gas due to the spasms. However, the tube failed either since teh spasms held the tube and twisted whcih resulted in a knot/loop (looking like hand-made) in the tube when I finally got the the tube out.
Ansimus is more a functional problem of the pelvic floor muscles but the defecography stated rather an impaired rectal empyting subsequently to insufficent propelling motility. I do have movement in my rectum but unfortunately it is discoordinated and not propagated so there is no force to expel t the stool/gas/liquids. So this is an example of neurogenic dysmotility.

After my diagnosis of CIP in Italy my surgeons were willing to try temporary ielostomy leaving my remaining colon. Thsi was the plan. However, druing surgery the remaining colon and rectum looked so bad (grossly dilated) that they decied to remove the colon. They left the rectal stump for a possible reconnection/ileorectal anastomosis.
Thsi time they could see the rectal dysmotility themselves my surgeons had not believed before. The rectum continues to produce stool which is expelled in a normal way in normal ileostomy patients. I was not able to do so even while having horrible pressure and rectal spasms. My rectum is chronically inflammed due to this problem.

I don't want to try the ileorectal anastomosis sionce I know it would not work. When I had my colon resection in addition to the persistent motility problem in the remaining colon I suffered from the rectal dysmotility and spasm which made things even worse in my colon and upper GI tract. The rectum has an impact on the function of the bowel part that is reconnected to it. If it fails the failure is taken to the proximal parts of the gut. If there is a dysmotility per se....then you can say good night.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/22/2010 5:51 PM (GMT -6)   
Output of my ileostomy is irregular. I have times with loose output(SIBO) and times with little/less and thick output. However keep in mind that the ileostomy iis best for dysmotility patients since the small bowel needn't additionally to push the swaste in the bag whereas with an ileorectal anastomsis the small bowel has to work more to get the stools into the rectum which basically has a storage function.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/22/2010 5:52 PM (GMT -6)   
Along with the bladder surgery my rectal stump should be removed since they rectal dysmotility is that severe that a reconnection is impossible and only causes more problems.

Vit. Ci did not work for me at all prior to the ileostomy but since the ilesotomy it does the trick a little bit.


My neuropathic pain in my feet/hands are stabbing and shooting, not constant but its onset is sudden and it lasts only few seconds , then it returns after a few seconds.. very painful...sounds like yours.

Where do you feel your constant belly pain most/in which area of your belly?

did you have some markers left in your small bowel or were all karkers stuck in the ascending colon? how did they disgnose you with small bowel dysmotility by this test? Have you ever had a small bowel manometry (that is th test my small bowel dysmotility was detected)?

Post Edited (pelztier86) : 4/22/2010 6:19:44 PM (GMT-6)


I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 4/23/2010 4:46 PM (GMT -6)   
Hi Sarah,

It's no problem. I probably should have mentioned that I still have a little bit of school right now. I have a university degree, but I'm slowly working on a second one. I don't know how much longer that will last, though...trying to balance my GI tract and school is complicated.

Wow. Did you have your first and second surgeries in Germany? One of the things my surgeon said is that, for motility issues, the general consensus is to do a total colectomy, not a partial. They have found that patients who have any type of a partial colectomy get no relief and have to undergo another surgery to remove the remaining colon. I'm so sorry that you had to experience that firsthand. Did you have an anastomosis following the first two surgeries?

What do your rectal spasms feel like? Mine feel like I sat on a bolt of lightning. They're really strong, and come without warning. Is there any plan to remove your rectal stump? If they removed it, would they be able to get all of the branching nerves out so that you would no longer have spasms?

You're right about that! Everything in the GI tract affects every other structure. Put one little problem in there somewhere along the way, and very painful domino effect takes hold.

It was never explained to me that way, but it does make sense that the small intestine would have to work harder to move waste into the rectum, rather than into a bag.

With the varying output from your ileostomy, do you have bloating and cramping? Is your small intestine fairly comfortable, or is it still a major problem? Now that you have the ostomy, is your rectum the main problem?

Our nerve pain does sound similar. It's a little scary because it makes me think that this is a global and progressive neurological disorder. One doctor mentioned a possible disorder of the autonomic nervous system, but because we have nerve pain in our extremities, it makes me think that the damage is not restricted to the autonomic nervous system.

My abdominal pain really isn't in a specific area. It honestly hurts all over my abdomen. When I eat, I can feel the pyloric sphincter spasm and clamp off. Food in general triggers widespread abdominal pain and bloating. When it's really bad, the pain travels up into my shoulders and neck. What is your diet like?

I have not had a small bowel manometry. My small bowel dysmotility was diagnosed off of the full gut emptying study- the time it took the isotope to move through was way too long. I did have some of the isotope left in my small bowel; the rest was stuck in my ascending colon. I also had a full-gut barium study about 8-9 months after surgery (when things started to get really bad again), and they found dilated loops and partial obstructions. My GI doc at the time didn't think either of those findings were cause for concern. I disagree, and that's why we're going to a new gastroenterologist. Maybe someday all of this craziness will be over.

I hope you have a good weekend! :)
According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...
 
July 2007: Diagnosed with colonic inertia at the Mayo Clinic
November 2007: Total colectomy with ileorectal anastomosis
Post-op: Somewhat better, but I still have chronic debilitating pain (small intestine dysmotility)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise.
 
Psalm 73:26
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/23/2010 5:35 PM (GMT -6)   
Yes, I had my first and second surgery in Germany. After these procedures I had an anastomosis to the rectum each time....but I had the rectal spasms even before the first surgery when I had my entire colon still in me.
The rectal spasms feel as if the rectum was going to twist around itself and the stools/gas/liquids got stuck and instead of moving the waste forward/out it just pushes the stools for- and backwards , and they come without any warning like you said. The only way I could empty a little little bit was by chance when I pressed on the back n the right moment and manually helped the stools to come out. If I let this moment/second passed when the spasms had accidently pushed the stools in the right direction then there was no possibility for me to get something out for hours/sometimes days before there was another chance. Keep in mind that this was not only when I should pass stools but also gas which I had teribble trouble to get it even to the rectum since it was trapped in the long/loopy/elongated colon.

I wouldn't say that I am symptom-free from my small bowel and stomach but I know taht I would be a lot worse with an ileorectal anastomosis.
Eating is particularly limited due to my delayed gastric emptying.
I can handle a broader diet (although the options are still very limited, I bascially eat the same every day consisting of a few things that I tolerate) since the ileostomy and I am able to eat more. Prior to colectomy I barely consumed 400kcal a day and that was very painful and made me incredibly nauseaus.
However, I undergo different phases/episodes which means that there are times that I am betetr and times I got worse without any obvious reason.
And these episodes are reflected by the different/irregular ileostomy outputs.
I am grateful for the improvement the ilsotomy gave me. However, I have only had it 1.5 years. Progression of the generalized dysmotility seems to be slower with an ileostomy than with an ileorectal anastomosis but eventually it is very likely that the progression will take/does take place..this is at least the understanding I got from my own research and from the motility specialist in Italy.

As I continued to lose weight after surgery I finally had a nasal tube for enteral feedings into my small bowel placed. This was awful and made me quite nauseaus, I could not run the feedings on a high rate and could eat less then before while I was on feedings.
Since October last year I have been on parneteral feedings in additon to my oral intake and I have gained 10kg this way. How is your weight? I was 38kg at my worst and I am quite tall. Now I am 49-50. My waeight does fluctuate quite a bit during the week I don't know why.
I also have hypothyroidism...do you have thyroid issues as well?

The rectal stump should be removed along with the bladder. The rectal spasms and their intensity lessened since surgery as the rectum is not used any longer. However nobody can say how my anus/pelvic floor and teh nerve tissue there will react. That's why resection of the stump except for the spincters instead of removing teh entire rectal stump (which bascially would mean amputation) is planned although I do have spincter problems as well.
The bladder situation ans spasms are now worse than the rectal spasms.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/23/2010 5:42 PM (GMT -6)   
do you have problem with your body temperature? I often feel cold, and then after a few seconds I am very hot. I think this may be linked to autonomic dysfunction/nueropathy although this does not necessarily cause the dysmotility problem. It can just be a problem in addition to your motility issues, or the motility issue does cause the autonomic dysfunction. I am also concerned about a systemic neurological disease that is progressing though since I don't think I could handle being immobile/moving problems/joint pain/neurological symptoms on top of teh digestive/bladder issues.

do you have times when you are better/worse or do feel pretty the same? do you have such episodes?

dilated bowel loops on x-rays are definitely a sign for partial obstruction.

Post Edited (pelztier86) : 4/23/2010 6:38:10 PM (GMT-6)


I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 4/24/2010 11:30 PM (GMT -6)   

I know the feeling. I'm not sure that my rectal spasms are as bad as yours are, but I know what it's like to have to catch them at exactly the right moment in order to pass anything. I have a lot of trouble getting gas out...even more so since surgery. I noticed that while I was still in the hospital recovering.

 

I eat the same thing every day, too. What foods are on your "safe" and "unsafe" lists? My eating before surgery was the same way as yours- I could only get in a fraction of the calories that I needed. Eating has been a little easier since surgery, but the good days are getting farther and farther apart, and I'm having more and more trouble eating and getting the food to move through. It's like food just sits in my small bowel. It does have its phases, and like you said, there is no explanation for why any given day is good or bad. Lately, I will have several weeks- to- a month of lots of pain and problems, then a good day or two, and then it will be back to lots of issues. What is the cycle like for you?

 

I've heard that the nausea from both nasogastric tubes and J-tubes is really bad. I haven't had a feeding tube, but I was on TPN for a bit. It is normal that you couldn't eat as much with the feedings. When nutrition is supplied via NG tube, J-tube, or TPN, the body recognizes that influx of nutrients and suppresses the appetite because it thinks that it is getting all the nutrients it needs. I was on TPN right out of surgery. It was great because it kept me from losing additional weight while my bowels woke up from anesthesia, but I had zero appetite (and I've never had much of an appetite).

 

My weight now is about 98-100 pounds (44-45kg). At my worst, it got down to 80-82 pounds (36-37kg). I am a medium height- about 5 foot, 7 inches (170cm). I hope I got those conversions correct! My weight fluctuates based on how bad my motility is, and how much food is sitting in my small bowel and not moving.

 

You read my mind! I was going to ask you about your thyroid. I am not "textbook" hypothyroid, but my thyroid numbers are on the very low end of what is considered "normal." Every time they check my thyroid levels, they seem to be a bit lower than the time before. I'm probably due for some more blood work pretty soon, so it will be interesting to see where my thyroid numbers are at. My mom and my brother are both on medication for hypothyroidism, so there is a family history of it.

 

My body temperature has always been a mess. I am cold most of the time, even during the summer. Summer days in Texas are frequently over 100 degrees Fahrenheit (37 degrees Celsius). I have times when I get very hot, break a sweat, and then a minute later, I'm cold again. I agree- it's not necessarily directly linked to the dysmotility problems, but it is indicative of autonomic problems. Do you have problems with dry eyes and mouth? I do.

 

Have you had any hair loss, or problems with your complexion? Is your menstrual cycle normal? There are times when I lose a lot of hair, then it will taper off for awhile, and then start again. My eyebrows also seem to fall out easily. Weird, I know. When my motility is really bad and I'm in a lot of pain, I get severe breakouts of cyst-like acne on my face. My period has been off and on since 2004- sometimes there will be 5-8 months between periods. I know that is from my weight being low.

 

I am also concerned about a systemic neurological disease. My knees have been bothering me for awhile, but it hasn't affected my activity level. I guess all we can do is take one day at a time, and keep doing our best to deal with it all. I never imagined that my life would be like this, that's for sure.

 

If you still have spasms in the anus after the rectal resection, will they go back in and remove the sphincters as well? I know sometimes they remove all of the rectum and the sphincters, and then sew the anus closed. Do you already have the resection surgery scheduled?

 

Have you ever tried Domperidone? It's a drug that is not approved for use in the US, but if I'm remembering correctly, it is used in Canada, Europe, and New Zealand. Even though it's not approved here, we can get it online, and some US doctors work with Canadian pharmacies so that they can get it for their patients. Domperidone helps speed the motility of the stomach, and a little in the small bowel. It didn't help me very much, but I know that it works wonders for some.


According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...
 
July 2007: Diagnosed with colonic inertia at the Mayo Clinic
November 2007: Total colectomy with ileorectal anastomosis
Post-op: Somewhat better, but I still have chronic debilitating pain (small intestine dysmotility)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise.
 
Psalm 73:26
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/25/2010 5:13 PM (GMT -6)   
I tend to do best with semi-solid things I usually need much longer to finish a meal than a normal person. I know I have to be cautious not to overdo it and to take considerable time for eating even if this will mean eating all the day in small amounts.

I can have no diery with milk, fructose or saccarose (I only tolerate the mono-saccharid glucose which is in turn quite bad for the SIBO, bacteria do like glucose most), soy and with much quantities of fat or fiber in it.

So I can eat pudding made from rice milk (no "real" milk), a muffin (only hand-made since I have to control the ingredients and I can decrease the amount of fat and fiber) which I have together with some rice milk to make it more smoothy going through the digestive tract. I have troubles with eating and drinking at the same time so this has to be scheduled which is not an easy task since I get easiliy full with trinking. However I have to drink since with an ileostomy you are at risk to lose important electrolytes etc.
Then I can have a very light baken " bread" without gluten that is easy digestable; you normally take it when revovering after you have ad the stomach flu..I don't knwo the English word for it.

I never eat fruits or vegetables. I have to eat quite unhealthy food but luckily I get the supplement feeding. Since the nasal tube went down into the small bowel it was thought not to cause a decrease in oral intake but I think the some of the feeds refluxed back into the stomach subsequently to the small bowel dysmotility.

The things that don't bother me can vary between the episodes I undergo. They can range from a few days/max. one week to several months... I am not able to figure out know what causes a changing.

I am not textbook hyopthyroid as well: My main problem is low fT3 level which is the active form of the thyroid hromone. I have always had borderline values of the fT3 but it was not treated. However I noticed that before my problems got that severe when I already suffered from abdominal pain, feeling full and terrible contsipation I did not lose weight and was not underweight despite little oral intake.
I also gained well and easily while being on parenteral nutrition. So if the bacteria does not eat the food that goes throug the enteral route my body does not seem to have high but rather low caloric needs.
Some docs believe that the isolated fT3-decrease is due to the chronic disease your body has to deal with and the malnutrition/little oral intake which slows metabolism down. it is a protective mechanism of the body to store the little nutriens it gets.

Have you always had problems with being underweight? Ususally people tend to be overweight and/or have a very hard time to maintain/decrease their weight since with hypothyroidism metabolism is low and so the caloric needs.
You say your values are at the lower end of normal....which value do you mean exactly? if you refer to TSH then it would actually mean an overactive thyroid/hyperthyroid..
do you feel you have to take in relatively much in order to maintain your weight? if yes have you always had this problem as well?
do you gained well/easily when you had parenteral feedings?

I don't know what they will do when the spasms continue in my sphincters..i guess they won't do anything more. At the moment the bladder and infection issue is more threatening and painful than the rectal spasms which have lessened since surgery. After my resections I did feel right after surgery that each time the rectal spasms have got worse. I have had a very hard time to release gas as well...it was nearly impossible.

I also noticed that when I have a bad bout of SIBO and smelling ileostomy output which is then massive and liquid I have pretty bad acne in my face as well. I think it is SIBO/bacteria-related.

I have tried Domperidone a few times but it seemed to little effective...reglan does more but has had horrible side-effects.

As far as my menstruation is concerned...well due to being (very) underweight I have had it off and on in relation to my weight. However I always had a period that you can't call period cause tehre was nothing regular in it....very little but it didn't stop. I even though about a conncetion with the motility issue since the uterus is also an organ which consists of smooth muscles cells that can be effected with CIP as well. I have the impression that the blood simply ill not be released since there is no propelling movement of the smooth muslces of the uterus that pushes it out..so there is only gravity to work...at the moment I have a "period" that I would not even notice if I didn't have to take vaginal tablets for my chronic vaginal infection subsequently to the bladder situation and the use of antibiotics.

If you have troubles with SIBO and antinibiotocs bothering you you can try xifaxan which is poorly absorbed from your bowel so that it is better tolerated. I ttok it on a daily basis to prevent SIBO since when I go off an antibiotic it will usually return within 2-3 days. However, I found out that it won't be that effective than it used to be before.

Post Edited (pelztier86) : 4/25/2010 5:19:57 PM (GMT-6)


I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 4/26/2010 11:08 AM (GMT -6)   
It takes me a long time to eat meals, too. I have to go really slow to make sure that I don't overdo it, also.

I cannot have any dairy products, soy, red meat, and I have to be really careful of the amount of fat in each meal- if I get too much, motility stops. Grains are very problematic for me, but here is where it gets weird: I tolerate wheat better than any other grain. Rice, oats, buckwheat, sorghum, etc. all move very slowly through my GI tract and cause bad constipation, bloating, and pain. Wheat seems to move through much better. I use almond milk instead of cow's milk. My diet is almost the complete opposite of other colectomy patients. I have to eat a lot of fiber. Low fiber diets really cause a lot of pain because the food won't move through my GI tract at all. Bananas and grapes are pretty much the only fruits that I can comfortably eat raw. Other fruits have to be cooked/canned (peaches, pears). I have a hard time with apples- I cannot eat raw apples, but on occasion, I can have applesauce. Carrots, green beans, spinach, and beets are the vegetables that I have the easiest time with, however I have to thoroughly steam all of them until they are very soft. Sweet potatoes and yams go down pretty well, but not regular potatoes. I have the same problem with drinking that you do- I have to be careful of how much I drink with a meal.

I am the same way you are- the foods that work and the foods that don't vary, and there is no explanation for it. I can't figure out what triggers my episodes, either.

Have you been diagnosed with celiac disease? Why did you decide to go with a gluten free diet? Did it help? How long did it take for you to notice a difference in symptoms after cutting gluten out of your diet? I have tried a gluten free diet before, but my symptoms only seemed to get worse.

I think you're right about your nasogastric tube. The small bowel dysmotility probably was causing the feedings to reflux into your stomach.

Yes, the metabolism slows when the body in a state of starvation. That way, the body conserves what energy it does have. My TSH levels are the ones that are low. I have always been thin, and I do tend to lose weight rather quickly when I don't/can't eat as much. I don't think that I gained very quickly with the TPN; I did gain a little, and the TPN did keep me from losing any additional weight. Aside from my weight, I have more symptoms of hypothyroid than hyperthyroid. I know it doesn't make any sense. I have fatigue; weakness; dry hair; dry, pale skin; hair loss; cold intolerance; muscle cramps and aches; constipation; abnormal menstrual cycles; and some memory loss (probably just from being so tired). Those are all symptoms of hypothyroid. The symptoms of hyperthyroid are: heart palpitations; heat intolerance; nervousness; insomnia; breathlessness; increased bowel movements; light/absent menstrual periods; fatigue; fast heart rate; trembling hands; weight loss; muscle weakness; warm, moist skin; hair loss; staring gaze. There are a couple of symptoms that cross-over, but in general, I have more hypo symptoms than hyper. Weird, isn't it? My doctors aren't sure what to make of that yet. As we find out more, I hope they find an explanation.

I agree about the SIBO and acne connection. I also think that the stress that the body is under contributes to the acne, hair loss, etc. The little "periods" that I have are the same way- just a little bit of spotting, if that.

Reglan worked wonderfully for me for two days until I had a major neurological side effect. I developed tardive dyskinesia. I was 19 at the time. There are lots of videos of tardive dyskinesia online if you want to see what happens. I lost control of my tongue, lips, and jaw. They moved uncontrollably, and no one could understand my speech. I was very fortunate in that it went away after the Reglan was stopped and they gave me a huge dose of Benadryl. For many people, tardive dyskinesia is a permanent disability. The involuntary, jerky movements resemble Huntington's disease. I can't imagine having to live with that for the rest of my life. I don't think I would ever leave the house.

I have done three rounds (10 days each) of Xifaxan in the past. The first round helped for the first 3-4 days. The second and third rounds made my motility symptoms worse.
According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...
 
July 2007: Diagnosed with colonic inertia at the Mayo Clinic
November 2007: Total colectomy with ileorectal anastomosis
Post-op: Somewhat better, but I still have chronic debilitating pain (small intestine dysmotility)
 
Currently trying to figure out what my physical abilities will allow me to do career-wise.
 
Psalm 73:26
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 

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