Feeling hopeless after surgery didn’t clear up pain/vomiting...

Juliet... interesting that your issues are running alongside mine. I have tried to do dulcolax, senna, etc to get things moving correctly and still having issues. Intestinal pain that was so strong yesterday, I needed to take an oxycodone. I sent a message to my GI to see what they want to do next. I am feeling like they may end up having me scoped, too.

Something has to help things. I am scared of the ER due to their last response that they saw nothing wrong and thought I was faking the pain. I guess we will see, but right now I am trying to get things moving with that senna... intestines are pretty painful right now, though...

I went to a totally different hospital system ER last night, where I have some friends who work at. This experience has been tons better.. I felt like they were trying to fix me and not try to prove me wrong. I ended up getting admitted and they are doing a colonoscopy tomorrow morning at 8am, by my suggestion. Hopefully then we can figure out if I am having some adhesion issues, what this motility issue is, etc. I already pretty much did the prep with their bowel cleanout, so I am pretty much set for the morning. Doctor is a bit hesitant, as he isn't my IBD doc and it is a different health system, but my doc isn't doing these things and I think they are necessary to checking what is really going on.

I may end up switching docs because of all of this, as I am just frustrated. But at the very least, things are getting done that need to get done. Know you are in my thoughts, Juliet! I hate the hoops these places make you jump through sometimes.

Hey Juliet... just wanted to quickly update...

The scope shows that I have moderate disease in my large intestine into the small. That isn't even saying what is going on in the small. This goes against what my GI's have been saying, that my disease is only mildly flared up and my main issue is constipation. I am actually having some bigger issues here, and fortunately because this smaller health care system is spending the time on me... they are finding out that things are more severe than they thought at my current GI.

That being said, I am moving forward with care here at this hospital. They have given me the time of day, and are trying to get me feeling better. Next step is a biopsy of my lymph nodes near my small intestine, as they are enlarged and a bit concerning to whether cancer is there or not. If cancer isn't present.. then onto a biologic again.

It almost sounds like you may benefit from another opinion on things, too. I don't understand what makes some doctors think it is OK to not listen to their patients, but it seems to be becoming more common than not unfortunately.

Please make sure they ran a full celiac panel and not just the screening TTG blood test (antibodies) which does not catch all celiacs. Also make sure they take enough biopsies of the small intestine at your next endoscopy. Finally, diet may be key. A small study out of Scripps in San Diego placed IBD patients on the SIP diet (autoimmune Paleo). In just six to eight weeks they achieved about a 78% remission rate (patients stayed on on their medications). That is amazing! Too bad no one wants to fund a larger study since it is just about food and not a pharmaceutical.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

UPDATE: MRI showed some sections of tethered bowel, but surgeon insists it couldn’t be his surgery (or that he missed this when he went in). Brilliant idea to try me on prednisone for three weeks to see if it helps (with NO evidence from any lab/test to support a flare). I didn’t start it. Same week I went to new hospital/doc. First thing she said was “I’m so sorry you’ve been so sick for so long.” I cried. Someone listened. She ordered a white blood cell scan which came back negative for active disease (what a waste the prednisone would have been!). That means new surgeon consult on Monday. Looks like adhesions. Y’all, this has been 9 months of on and off excruciating pain and liquid diet for months. I am tired, depressed, and want to give up but am holding out hope that this might be the actual fix for symptoms that started last April. Wish me luck. Thanks for support here because it means a whole lot.

UPDATE: Hello all,

All testing regarding functional bowel issues were completely normal. I got a second opinion on surgery, and this doctor was fairly certain based on my symptoms (the very precise place I can point to where the pain happens each and every time), and the fact that every single test, scan, bloodwork, stool culture, etc. came back normal, that I have adhesions causing my pain. He was very hesitant to recommend surgery since it has not been a year since my previous one.

He recommended that I try eating some very small portions of very soft foods, and told me to add them very slowly. I counted macaroni noodles and at 10. Then 2 spoonfuls of mashed potatoes. And then I waited for hours between anything else. I drank ridiculous amounts of fluid and stayed active. I was able to handle this for a few days, and then the bottom fell out. I began with bloating like I was 9 months pregnant, then the nausea, then the pain that takes my breath away to the point where even the pain medication prescribed did no good. And then the vomiting. The whole episode was about 10 hours long.

I'm headed to surgery on March 5th. I know it will result in another one and another one, but I am not ready to commit to a lifetime of not eating any foods just yet. I am trying to buy temporary relief, even though I know the likely outcome. It may not be the smartest decision I've ever made, but my physical and mental health are not in a great place right now, and I am worried what to do once this doesn't work again. Adhesive disease is one of the most challenging things to have, and it seems like modern medicine hasn't figured out a good solution at this point.

Wish me luck, and thanks for the support. I appreciate all of you!


Juliet

Karen,

Thanks so much for your response. I am definitely going to ask about the film. I had heard of it before, but it surely couldn’t hurt giving it a try if my surgeon is willing. I will also try your suggestions as well after surgery. I will try anything to avoid that kind of pain. I would do anything to make it stop. Thank you for the positive vibes as I will surely need them. I’ll be sending some back to you as well. ❤️

Juliette and Jake:
A turning point for me in living my best life with chronic illness was coming to realize that I could not count on standard medical care nor physicians to hold the answers or fix to my plights. I came to realize that my life was fundamentally altered. I came to to look to myself to find different ways and means to manage symptoms and give me a better quality of live.

I think you will both come to find that the best answers and solutions to bettering your intestinal function and reducing pain/intermittent obstruction will, ultimately, come from within yourself.

Jake . . . Your symptoms are suggestive of multi-modal origins. An amalgamation of inputs from your health history.
1. Chron’s and effects of inflammation (strictures, scar tissue, absorbtion of nutrients, pain).
2. Post-chemotherapy collateral damage (neuropathic pain, neuropathic functional slowing of the intestinal tract with intermittent pseudo-obstruction).
3. Post-surgical effects (scar tissue/adhesions, vagus nerve trauma)
4. Effects of opiates on intestinal slowing

Senna is a stimulant laxative. It acts to stimulate a bowel movement by irritating nerves of the large intestine. Senna is like teasing a resting cobra snake. The snake awakes, mad, and lashes out. Senna irritates the intestine and causes the smooth muscle to react in a forceful all-in-one contraction.

But I can understand why you feel compelled to use Senna. An intestine that is functionally underpowered or acting in a hapazard mode of contracting and resting can bring distressing symptoms of constipation, bloating, and a large volume of retained decal material. It extracts an emotional toll. You lose faith in your intestine and question each day if the day will be a day of diarrhea or constipation. Your intestines begin to rule your life.

With possible neuropathy from chemotherapy affecting your intestinal motility, I can see how you may need a “big gun” effect of Senna to get things moving along.

Miralax and MofM are a more gentle approach for long-term bowel management. Miralax is used as a full fledged bowel prep, so you can be assured that it will work to keep foodstuff moving along. Key is to use Miralax or MofM on a daily basis. Every day. You may need to use 2 packets of Miralax a day or 3-4 tablespoons of MofM.

I have an ileostomy and yet still use 1/2 packet of Miralax a day to keep my intestines functional. I am on a fairly high dose of opiates for pain associated with avascular necrosis of my hips. I aim for a consistency of chocolate syrup for my ostomy output. If I see things slowing or my output thickening, I add in more Miralax for a few days.

I will admit that I have had to make more substantial changes to what and how I eat then most people would accept. I was not a big “foodie” to begin with so that made some of the diet changes easier for me then will be the case for most people.

Basically, I subsist on a predominantly liquid diet. Smoothies, chocolate milk (my favorite), creamed soups, hummus with a soft pita bread, custard. What solid foods I do eat are soft (banana bread, pasta with sauce) and of a small portion size (1/3-1/2 cup).

Yoga and stretching is a daily routine. It serves as a form of intestinal massage.

Grape juice (100% juice, not a juice blend) is also helpful. Grape juice has flavonoids that thin fecal consistency and also promote intestinal smooth muscle. 100% grape juice is a staple item in my kitchen cupboards.

Living with intermittent intestinal obstruction/paeudoobstruction is not easy but it is doable. Look at your symptoms as they appear, look for trends and patterns that may have precipitated the distress. Keep a barometer in monitoring your bowel movements and consistency. Act proactively to quell an increase in distress. That is, add in more Miralax or MofM, ease off of eating solid foods and focus on hydrating with clear fluids, stretch and move, take a warm shower or bath.

I think, with time, each of you will find a pathway out of the woods - personal insights and collaborating with your physicians will give you tools and ideas to easing the distesss you have today.

Best wishes for a better tomorrow,
Karen