Functional bowel issue or adhesions/partial obstruction?

Hey folks,

I need some help from the community here. In another post a few months ago, I recounted my story of having episodes of extreme upper left abdominal pain, nausea, vomiting about 1-2 hours after eating which began in April 2018.The episodes come on for about 7-8 hours, then I go on a liquid diet, then can eat normal again for a few weeks. I've been tested for everything. CT, MRI, tagged white blood cell scan, upper/lower endoscopy, biopsies, celiac, c-diff, every possible lab and culture. In July, after seeing some looped sections on a CT scan, docs went in to "clean up" anastomosis sites from two other surgeries, and removed some adhesions and scar tissues laparoscopically. Six weeks later, my symptoms returned, exactly as before. No tests indicate active Crohn's. I've been on and off liquid diets for months, and most recently for two full months, all the way through the holidays. It's hard to go to work like this, and I am getting very depressed. Fast forward to today. Two new docs. New surgeon consult said that he would do full open surgery for possibly lysis of adhesions and anything else needed, however, just couldn't guarantee that this would do anything either since adhesions don't show on scan. There is a small section in right lower that is dilated, but nothing that indicates what in the world is happening upper left. He said that there is a very small chance this is a functional bowel issue, but in over 25 years, he's only seen that once. He even said that there's even the option that we do nothing if I can't handle surgery, and I just continue on a liquid diet for the foreseeable future (HOW IS THIS A REASONABLE OPTION?!)


Here's where I need your help: I do not know what to do at all. I have no desire to sign up for another surgery, especially one with a long recovery time, but if there is a small chance I could be normal again, and eat real food and not have every second of my day caught up with this, I may do it. But I keep asking myself how I would handle it if my symptoms returned again? Do I just take the risk and cross that bridge when I come to it? I know you all aren't doctors, but I'm hoping some of this may sound familiar to you all, and you can give me some more insight to make an informed decision, or even just commiserating would be great. I am sick and tired of being sick and tired. Thanks for allowing me to vent, y'all. It helps.

Stray dog,

I have a new GI and a new surgeon. My old GI left and old surgeon...well, let’s just say I wasn’t completely confident in him since I didn’t find relief after the first surgery, hence the 2nd opinion. You’re right, since I’ve already had four surgeries, there certainly are adhesions and scar tissue, and I know each time I’m opened up, it’s only going to create more. It’s the worst Catch 22 ever. How has modern medicine not learned to deal with this?! I’ve even considered going to Mayo or Cleveland Clinic, but my guess is that that I’ll be months out from seeing someone and then more months until a solution. Not that I should rush into this, but I just do not know what to do.

Juliet,
I am normally on the pain forum but was browsing this morning and your post caught my eye.

I do not have IBD. I do have history of several intestinal-based surgeries due to an initially grave perforation due to high dose corticosteroid steroid use - leaving me with a permanent end ileostomy and short bowel syndrome and a web of adhesions.

Functional disorders of the intestine are not uncommon, so I am surprised by your surgeon’s comment that he has seen only one case. It may be that, as a surgeon, your surgeon does not as a primary provider for those who present with functional motility disorders and thus his low engagement with the condition. Care for a functional motility disorder is most often provided by a gastroenterologist with interest or speciality in how the gut physiologically moves food down and through the GI tract.

Multiple abdominal surgeries can lead to development of slowing of the GI tract by subtle trauma to the vagus nerve as well as disruption of motility receptors embedded in the mucosa of the stomach/intestine that react to the transfer of key electrolyte ions involved in smooth muscle contraction (ex. Magnesium, calcium) and endocrine hormones (serotonin, epinephrine). Surgical trauma thus impairs the physiological motility of the small intestine. It can be manifested as intermittent or transient slowing or cessation of motility. Picture a to a car that is lurching toward a service station, sputtering and driving erratically.

Gastropareis is a functional motility disorder of the stomach. It involves slow and delayed mechanical churning of food by the stomach as well as delayed or prolonged emptying of stomach contents into the small intestine. Awareness of gastroparesis is growing as more people are affected by it. Type 2 diabetes is one culprit that can cause gastroparesis due to neuropathy of nerve fibers that regulate the stomach.

Your symptoms of nausea/vomiting and intense pain after eating are common with a functional intestinal disorder. The intestine becomes overwhelmed by more than a small amount of food and essentially “shuts down” or slows to a crawl.

Add in intermittent entrapment of a segment of small intestine by a band of scar tissue and the frequency of similar episodes will be higher. The small intestine constantly squirms and squiggles like a snake under the moist fatty apron of the omentum. It is against this backdrop of constant slithering that a segment or loop of small intestine can be temporarily snagged by an offending band of scar tissue.

Functional slowing of the small intestine is also called “pseudo-obstruction.” The term is appropriate as the symptoms of pseudo-obstruction are similar to a mechanical obstruction or kink of small intestine. Functional slowing of the intestinal tract is every bit as distressing as a mechanical/kinked obstruction. The symptoms are the same (projectile vomiting, severe pain) although the etiology differs.

I deal with a slowed digestive system. That is, I deal with functional slowing of my remaining small intestine.

Here is what works for me:
1. Regular, daily yoga. Yoga serves as an internal massage for the intestinal tract and promotes motility and movement. The intestinal tract is a long tube of smooth/involuntary muscle that benefits from regular movement and stretching of the torso and pelvis as well as general physical activity.

2. Regular bowel program
Even with an ileostomy, I adhere to daily use of Miralax. The purpose of using Miralax or similar osmotic laxative (Milk of Magnesia,; magnesium citrate) is to make the consistency of digested food matter more liquidity. The thinner and more liquid the consistency of food matter the easier it will be for it to pass through tightened/narrowed intestinal passageways and the easier to mobilize with an underpowered intestinal tract on slow speed. Symptoms of functional slowing (nausea, vomiting, pain) occur due to bqckpressure as retained food matter builds due to motility that slows. Daily Miralax or similar is an excellent proactive means to help “flush” the intestinal system and keep digested material moving along even when the intestine decides to slow.

3. Eat sparingly, small portions
It is helpful to keep to small portion sizes of 1/3 to 1/2 cup. You do not want to overwhelm the intestinal tract with dense, heavy, bulky foods nor a large volume of food at any one time. I graze and snack as opposed to eating a standard meal. I will choose a creamed soup over a double-decker sandwich. I will admit that I am not a “foodie.” I do not particularly enjoy eating and never have. For someone who enjoys the taste of food and who enjoys the experience of eating, the necessary lifestyle changes to live with a slowed digestive tract may be met with emotional hardship and frustration. You will need to eat differently. Smaller portion sizes. Lighter and less dense foods that are easy to digest. Soups and smoothies and yogurt and Instant Breakfast and macaroni and cheese and peanut butter and jelly sandwiches. Avoid or moderate your intake of foods high in insoluble fiber (ex. Edamamte, asparagus, the membranes of citrus fruits, the skin of an apple or pear, coconut macaroon cookies, larger legumes such as black beans or kidney beans, celery stalks, pineapple).

4. Hydrate, hydrate, and hydrate some more
Drink clear fluids throughout the day. Have a liberal intake of clear fluids. You want to have adequate water in the intestinal tract to ensure that digested food material is flowing along. Lack of hydration will further slow intestinal motility. Purchase a Nalgene bottle and fill with sparkling water so that you have a hydration target each day. I flavor water using Nunn’s tablets. 100% Concord grape juice and 100% apple juice have flavonoids that stimulate intestinal motility (not a juice blend). I always have Concord grape juice on hand.

5. At the first signs of an impending “crisis” (pseudoobstruction) cease any further intake of solid or even soft food. Do not eat. Instead, consume only clear liquids. Sip, sip. Take an added dose of Miralax. Sip warm prune juice or grape juice. Take a warm shower to ease abdominal guarding and muscle contractions. Use a warm buckwheat pack. Stretch and move.

I found physicians to be sorely lacking in offering any advice or suggestions to my slower intestinal status, despite repeated hospitalizations and 2 open surgeries to snip away offending adhesions. I finally connected with a integrative medicine provider who provided me concrete ideas to implement.

Anyway, this gives you ideas to work with.
Karen

Looking at Karen's response... I do agree with her on a lot of the functional bowel issues. And there could be "referred pain" that you are dealing with. I know my issue stems from things getting stuck in my large intestine, but the thought is that it is affecting my small as well, with some of the distention issues. I also believe there is some scar tissue and adhesions from my last surgery that are causing some "sluggishness".

Nightly, I have been having extreme pain for the last few nights. I have been actively trying some things to get things moving better. Though I am wondering if I am going to have to do full "cleanouts" every other week or something, due to the constant issues I am ending up with. I started taking 3 senna every night, and now one around lunch to keep things consistently moving. I still haven't hit the "magic" combo to get things working right, so we will see.

Fortunately, I have doctors who believe me, but there isn't much in terms of answers for things other than getting my Crohn's under control. Not sure if that will fix this mechanical issue with my intestines (as I am sure my 3 surgeries have caused some of what I am experiencing with my intestines "misfiring"), but I am sure it doesn't help.

Karen... I so appreciate your comments and advice! As Juliet is struggling... seems her and I are running paralel on issues right now and sounding quite similar.

Miralax has been the common one doctors have wanted me to take. Unfortunately it hasn't helped me a whole lot outside of drinking the entire bottle in 64 oz of Gatorade such as what they do for a colonoscopy prep. Smaller doses don't help at all.

I wonder if MOM may help some...it has been years since I took that stuff but remember it coating my stomach nicely too.

Could the senna actually be harming me more than helping? I feel like I have gotten into a bad spiral these last few days.. since maybe Friday... where pain gets worse through the day then unbearable at bedtime. I have been taking Nucynta for my stomach pain since the beginning of ghe month and didn't have these issues originally... so I am guessing this isn't related to that. Nucynta unfortunately has issues crashing this nighttime pain. I have to basically knock myself out with a muscle relaxer to get to sleep with this pain... in the morning it is gone.

I see my GI again on Wednesday. One thing that did change that goes with the symptoms is my weaning off prednisone from 40 to 30 mg last Thursday. I also have been alternating out nortriptyline with gabapentin for migraine pain relief and just dropped to 20 of nortrip and up to 500 mg of gabapentin at night. Going to end up at 600 mg gaba and 10 nortrip prior to my next PM doc meeting in a week. I also read that gabapentin could cause constipation as well?

Either way... this is all very complex as I am dealing with constant pain from intestinal damage and adhesions... but also dealing with constipation pain. So complex. I really empathize with you, juliet!

Jake:
You are dealing with a number of factors, individually and collectively, that are likely affecting you.

Pain medication: You may be new to taking opioids on a regular basis. Opioids are notorious for slowing intestinal motility. Opioids compete with receptors for serotonin and epinephrine embedded in the intestinal tract. Opioids disrupt intestinal motility to a slow crawl. Opioid induces constipation is real and not a laughing matter. For anyone on daily opioids, a bowel program is essential.

Senna is a stimulant laxative. So, too, products such as Ex-Lax or Dulcolax. Stimulant laxatives should be avoided as laxative dependency can develop quickly. Meaning, the intestinal tract “forgets” how to function and becomes physiologically dependent on a stimulant laxative to evacuate. That you are having to take 3-4 senna a day is worrisome.

Miralax has the same active ingredient as prescription bowel pre forumulations (ex. SurePrep; GoLytly). Miralax WILL get even the slowest of bowels movin’ along, unless they are more serious underlying issues not known (ex. a sizable tumor obstruction; significant stricture or volvolus; injury or metastatic process involving the lower lumbar/sacral vertebrae or cauda equina).

You may need to take more than a single dose of Miralax. It is not uncommon for people with a history of repeated abdominal surgeries to need a double dose of Miralax. Individual dosing of Miralax will vary. Also, it takes an initial 2-4 days of consistent dosing with Miralax to see full effect. For someone with slow intestinal speed, transit time from mouth to anus can be quite prolonged - approaching 5-7 days. You will need to stick with Miralax initially for several days before tossing it aside.

Also, taking Miralax (or Milk of Magnesia or other) is best consumed as divided doses through a day rather than as a single dose chugged with a glass of water. People will often portion out the days’ Miralax total dose that works for them and then mix small amounts from this total Miralax dose into beverages as they drink during the day. Others will fill a large Nalgene bottle (48-64 ounces) add the days’ Miralax and then sip sip sip. Completing the Nalgene volume by the end of the day.

Teachings: You may need more than a single capful of Miralax a day. Many people do. Hold the course as you begin a daily Miralax regimen, knowing that it may take 3-5 days to see full effect. Miralax is available as single dose packets which is handy in keeping tract of exactly how much you are taking, as opposed to a rounded tablespoon. You may need a full 1 and a half or 2 packets a day. Hydration is critical. The intestine needs a goodly volume of water when it is on a slow speed setting. This is where eating solid foods can be counter productive, as it works against a slowly moving intestine. Choose a soup for lunch instead of a slice of pizza. Track how much you are intaking of clear liquids, as a starting point. People often are intaking a lower volume of clear fluids then they think.

Milk of magnesia is also a good choice if Miralax is not agreeable to you. The active ingredient in MofM is magnesium. Magnesium is a key mineral that crosses the cell membrane of smooth muscle cells to elicit muscular contraction. That is, MofM (and Miralax) both provide a needed kinetic nudge to move the intestines along. MofM is non-habit forming and can be taken safely for the long-term. That is, it is not a stimulant laxative as is your current Senna.

Your intestine, unfortunately, may already becoming dependent on the Senna. This may also make your transition to Miralax or MofM take a little longer and require that you take a double dose of Miralax or MofM - at least initially.

Chemotherapy, as I understand you completed, may also be playing a role in your functionally slowed intestine and in the pain you are experiencing. The platinum based chemotherapy agents, especially Oxi, are know to cause peripheral neuropathy of the hands and feet. What is less discussed, is the similar neuropathy that is inflicted on the GI tract. Platinum based chemotherapy drugs do cause small fiber neuropathy of the GI tract. Gastroparesis, pseudo-obstruction and slowed small bowel and large bowel motility are less discussed but real effects of chemotherapy often employed in treating colorectal cancer. Small fiber neuropathy can also lend to diffuse abdominal pain, similar to neuropathic pain people are familiar with affecting the hands and feet. I do not know why physicians are so restrained in discussing the wide swath of residual effects of chemotherapy. My sense is that your prior history of chemotherapy has a contributing role in your current symptoms and distress.

Titrating off of prednisone as you are will also have you feeling off-Center and not yourself. The effects of prednisone are body-wide. Tapering is not always a simple process, especially if you have had several prior periods necessitating corticosteroids. We can save this for another time.

For now, focus on hydration hydration hydration. That alone can often have people feeling better. Introduce Miralax or milk of magnesia to replace your current use of senna. Divided doses of Miralax or MofM, take small/divided doses spaced throughout the day. Each small portions of food at any one time, graze. Steer clear of dense/heavy foods and foods high in insoluble fiber. Walk daily. Add in yoga or basic stretches as is comfortable for you.

Diagnostic testing: There is diagnostic testing for motility. A Gastric empty study assesses the stomach (you eat a piece of toast with a radioactive tracer which is then followed by imaging). A small bowel follow-through study assesses the small bowel (you swallow or have an NG infusion of gastrograffin into the duodenum which is then followed by imaging). A sitz marker study assess the large intestine (you swallow small capsules that are not digestable and are followed by imaging).

So there are definitive studies that you can discuss with your MD in the future. I have had the small bowel follow-through on two occasions. Not fun but not too onerous.

I hope this helps you in some small ways. Take what information might help you and disregard the rest. There is necessary trial and error to find what will best suit you and your body.
Karen

Juliet:
To clarify . . . Adhesions and scar tissue are opaque to imaging studies. Adhesions and scar tissue is normal connective tissue, but connective tissue that is thickened and misplaced and on hyperdrive. Adhesions and scar tissue, by itself, will not be apparent nor visible on CT, MRI imaging.

What can be seen are acute findings of scar tissue, if present. Example: Where an area of small intestine is entrapped by a band of scar tissue, the area restricted will be visible as enlarged or dilated intestine above the stricture. Example: A good volume of fecal matter retained in the large intestine will be seen, and suggestive of scar tissue or underpowered intestinal motility.

On thing that is apparent . . . Physicians have become increasingly reliant on CT and MRI imaging to the exclusion of any other information. But CT and MRI are grossly limited. They identify structural or anatomical abnormalities. They are only as useful as the radiologist interpretation.

Imaging has NO usefulness in indentifying functional disorders nor disorders in the “how does an organ or body system work.” Imaging studies completely neglect physiological issues.
And yet there are innumerable physiological conditions that can account for GI problems and distress. The reliance on imaging studies is a huge failing to patients who have ongoing sysmptoms and no diagnosis.

A slow speed intestinal system alone can account for severe nausea, pain and vomiting that you are experiencing. Pseudo-obstruction means that the intestine is underpowered and not moving digested food material along as it should. Pseudo-obstruction is equivalent to mechanical obstruction. Make no mistake. But pseudo-obstruction and functional motility disorders still do not capture the attention of physicians as they should. Personally, I think it has to do with the fact that pseudo-obstruction and motility disorders do not have a diagnostic basis in imaging studies or endoscopy procedures (which physicians favor as they are easy to order and generate revenue). Adding that functional disorders are challenging to treat and take time and attention and patient education and counseling, which does not fit well with a medical model that only allows for 15 minute appointments.

The truth is that if you and jake are experiencing functional dysmotility (which I would guesstimate that you both are), there is not one-size-fits-all fix. It will largely be a bit of trial and error on your part. Trying the suggestions that I have imparted. A bit of this and a bit of that. Recognizing that how your digestive system functioned before may not be how your digestive system functions now. Adapting and adjusting will be ongoing. Learning what foods work for you and which give you distress. Portion sizes. Hydration. Identifying a daily bowel management program (Miralax or MofM or supplemental magnesium or cod liver oil) that works for you, and keeping to it daily - even when symptoms dissipate. Recognizing that some days will find your digestive system irritated and angry for no particular reason. But isn’t that true of everyone, to a degree?

Physicians like to treat conditions that have readily available fixes and cures. Physicians shy away and become less engaged with chronic conditions. Which is a sad truism.

Do not be afraid to reach out, as your do here, and learn from others who are in similar circumstances or dealing with similar problems. There is much to be said for the model of people helping people. There is much that medical science does not know. There remains much of how the human body works that remains unknown and not of the provision of current medical care.

Honestly. I remain under-impressed with what medical care has to offer.

When you look at it . . . A appointment with a physician often ends with a prescription pill or medication. Most prescriptions have their own side effects and secondary miseries.

If you have access to an integrative physician, give it a try. Integrative medicine takes a more wholistic view of the total person and merges both conventional medicine with holistic/natural medicine.

A small bowel follow-through study would give you and your physicians information on HOW your small intestine is percolating and moving along. A small bowel follow-through study would give you information on the functionality of your intestinal tract as opposed to structural-anatomical information of a CT or MRI.

There is an important distinction between the physiology of the body (how the organs and body systems work) and the anatomy of the body (physical structure).

I suspect both of you have more functional issues of the intestinal system and less acute physical/structural issues.

And, yes, Jake . . . I sense chemotherapy has left you with neuropathy findings that are manifesting both an underpowered and slowed and interrupupted intestinal tract as well as annoying neuropathic abdominal pain.

I am glad that you found each other on this forum and can commiserate. It can be a lonely place when expected healing or recovery does not happen as expected or hoped for.
Karen

Jake:
I know that you have vested much hope in your new physicians, so I will tread carefully trying not to undermine their communications with you.

Senna is in a class of stimulant laxatives. It is a “natural” laxative in that it is derived from the leaves of the senna plant but its mechanism is to irritate the intestine to produce a bowel movement.

Stimulant laxatives disrupt the inherent rhythm of smooth muscular contractions of the gut. They act by triggering a forceful all or none response. Regular use of a stimulant laxative will lead to laxative dependency. That is, the intestine becomes “confused” and autonomic regulation of the motility of the intestine becomes impaired - successful bowel evacuation becomes dependent on taking the stimulant laxative and at a higher and higher dosage.

Stimulant laxatives, if used, should only be used on a short term basis. Stimulant laxatives: Dulcolax, Ex-LAX, Senna.

You can Google the question: “Is Senna a stimulant laxative?”

Senna-S is the same senna stimulant laxative with addition of a stool softener.

A stool softener acts to draw water into the large intestine. That is its only contribution.

Taking a stool softener alone, as in taking Colase, is a poor choice for treating constipation with an underlying slow moving intestinal tract. A still softener will add water to fecal matter in the lower colon and/or rectum. The fecal matter will become dense and weighty, like wet cement. It will sit stagnant in the lower colon and/or rectum and sit and sit and sit, as a stool softener as a single agent has no kinetic or movement enhancement effect. The result: You remain constipated with wet, dense fecal matter that is retained.

I do agree with your MD that your opiate pain medication is contributing to your miseries with cinstipation.

Opiates directly bind to receptors in the mucosa of the GI tract that normally serve as anchor receptors for seratonin and epinephrine. Opiates affect GI motility by occupying these essential receptor sites.

Anyone and everyone who takes an opiate for pain needs to follow a regular/daily bowel management program. Opiate induces constipation is real and not a laughing matter. You have approximately 20 feet of small intestine and about 4-5 feet of large intestine. That is a lot of acreage for fecal matter to be retained and to build up. ER visits due to the effects of constipation are not unusual. People fear that they have a bowel obstruction or other serious pathology . . . X-ray imagining shows significant retained stool due to opiate induced constipation.

A few years ago, there was a television ad that aired during the Super Bowl for a new medication (Azima) used to treat opiate induced constipation. The advertisement was ridiculed in the days after the Super Bowl. As a society, we can readily talk about little blue pills of Viagra for erectile dysfunction but we become shy and uncomfortable talking about the normal daily bodily function of a bowel movement.

Please look back on my earlier post in this thread regarding options for a regular bowel program.

Prednisone is not a constipating medication. However, abrupt withdrawal of prednisone (and like glucocorticosteoids) does have the effect of loose stool, bowel urgency, and diarrhea. Your one day absence of prednisone likely had the effect of ramping up your intestinal motility out of the distress the body feels with abrupt interruption of the prednisone you have been taking/prescribed.

Establishing regulation of your GI tract will take time and patience and finding the routine of a daily bowel management program. This is not a quick fix problem. The GI tract likes consistency and routine (see my earlier suggestions - Miralax, aloe Vera, even prune juice). The GI tract does not do well with irritating stimulant laxatives that disrupt whatever order and circadian rhythm you are trying to establish in normalizing daily bowel function.
Karen

Jake:
I am on Palliative Care due to seriously compromised health. I am also on a strong “pain cocktail” that includes a fentanyl patch and oral dilaudid. Even with an ileostomy and short bowel syndrome, I am careful to keep to a regular bowel program to avoid opiate induced constipation.

Miralax or Milk of Magnesia are both safe and wise choices. Both are osmotic laxatives that will work with the normal autonomic timing of your intestinal motility. Give it time to work. 3-5 days to gauge initial effects. You then can titration your daily dose depending on results achieved. Where you have ease of a regular bowel movement, stay the course with dosing. Where you are moving backwards to more constipation symptoms or have increased your food intake, add a bit more Miralax or M of M.
It really is a process of trial and error and determine a best practice for you as an individual.

Be well,
Karen