Chronic Constipation After Four Intestinal Surgeries

[Math_Person]

CHRONIC CONSTIPATION AFTER FOUR INTESTINAL SURGERIES

I have now survived colon cancer surgery, cancer free, for two years. But serious chronic constipation plagues me. I had to have THREE hernia surgeries after the cancer surgery, all due directly or indirectly to the initial tumor removal surgery. That's four surgeries involving my intestines within 16 months! No MD, GI MD, or anyone in my town can seem to help. Seems they don't know how dysfunctional and irritating/painful/dangerous chronic constipation can be. No real dieticians in my town. It seems constipation and/or diarrhea can follow surgeries on the intestines. I have trouble managing the daily constipation. . I have delved deeply into the literature on soluble and insoluble fiber. I even found recently that five types (not just two) of fiber have been identified! I try to get my fiber, especially insoluble fiber. But that often goes along with carbs, which leads to weight gain. I end up debating: Short term gain of less constipation via insoluble fiber/carbs that go with it, but risks of weight gain and all that goes with it? Or: Long term gain to avoid cardiovascular/overweight problems by not eating so much insoluble fiber to avoid extra carbs, but suffering constipation daily and all that goes with it? Gaining weight is a long-term possible threat on my cardiovascular health, even possible obesity! GI MD's won't give me the new chronic anti-constipation prescription med's on the market. They say the long-term effects are unknown and could be dangerous. Seems there's little way out, except eating 'bird seed' chia seeds. I tried once. Very difficult to the taste and to swallow. Not even sure they would help? I need high fiber, low carbs diet, I think, especially high insoluble fiber intake. Ideas welcome. Thanks!

[Math_Person]

In the beginning it was. Now I'm on Miralax daily and stool softeners. So the stool is softer, but STILL not easy to pass. They told me Miralax is OK daily for a long time. I hope so. Seems I don't get any 'oomph' to pass them. And if I stray from my fiber diet, I really get in trouble and need a "Ducolex" bomb to start things moving again............this happens when I mess up one day and don't eat just right. Thank you for asking.

[Nicole_GCCA Partner]

Dear Math_Person ,Thank you for posting and congratulations on two years post-cancer! I'm sorry you are having such trouble with constipation. Your body has been through quite a bit, four surgeries - that' s a lot for your body to heal from and adjust.

My immediate thought is that you need to find a specialist that has experience with multiple surgeries. I am thinking of a few community members here who have posted about having issues following surgeries.

Is it an option to try out a few other doctors? Chronic constipation is so painful and can lead to some real issues if not treated. I am not a doctor, I wish I had more ideas for you, but I will look for some resources.

"No MD, GI MD, or anyone in my town can seem to help. Seems they don't know how dysfunctional and irritating/painful/dangerous chronic constipation can be."

I'm so sorry to read that - it is really important that you are seeing medical professionals that are taking your pain and concerns seriously. I'll try to hunt down some resources to see if there's anything that might be helpful - but truly, I believe a specialist with experience AND a willingness to work with you (it may take several attempts at diet and medications) is going to be your best bet.

Thank you again for posting and I hope we'll be able to help you find some resources to get to your relief.

~Nicole @ GCCA

[Math_Person in reply to Nicole_GCCA]

Many thanks. The 'irony' is I live in a college town.....Gainesville, FL......where the U. of FL is. Mind you, I was not referred to the UF hospital by my G. P. for my surgeries. So I'm not blaming Shands Hospital (part of UF) for this. Still my GP is quite frank, and he told me I would not find a true dietician to help me here in town. The best my MD's could do was to refer me to GI MD's. They were and are of little use, seems.

You are so kind. I really believe in you. Closest big city that may do better is Jacksonville, FL. A Mayo clinic is there. But it is 1.5 hours away by car, and we have Covid.

I suppose I could somehow be seen at Shands. But what department? Nutrition and diet therapy are STILL not taken seriously in med school, it seems. At any rate, my ranting about this is in vain. You are right, I need a professional. Nutrition and diet therapy are not sexist issues!!! For decades, we know they are serious medical issues, much of which is still a mystery to us all. MD's don't deal with this seriously.

Again, end ranting. I appreciate your message so very much. Hope to hear from you soon.

Sincerely,

Math Person

[Nicole_GCCA Partner in reply to Math_Person]

Math_Person - responding to this comment separately from the one I just posted.

It is disappointing that diet and nutrition were not proactively presented to you as part of your cancer treatment, recovery from surgery, and even to reduce the risk of reoccurrence of colorectal cancer. Diet and nutrition play a major role in all of these areas!

Check out this information from the Colorectal Cancer Alliance - ccalliance.org/colorectal-c...

While ideally there would be a team of doctors with various specialities proactively working together on your various health issues and concerns, it is possible to build a health team and encourage that they consult with each other.

Many survivors share that their greatest advice is to fire their doctor if they aren't taking their concerns seriously. We encourage you to be your own health advocate and continue seeking medical advice and support from others who have experienced similar diagnoses and experiences.

Please keep us posted - we're here for you!

~Nicole @ GCCA

[Math_Person]

Many thanks!!! I will go to my local CVS ASAP to get this syringe. One question: Do you lie on your back or stomach for the five minutes??? So much thanks. Some hope here. Yes!! So kind of you.

[Math_Person]

Many thanks. I fight anxiety as well. Doing my best to overcome it. Counseling, mindfulness, exercise, etc.

I'll make sure to lie on my back. Interesting that anxiety can affect one's colon, but, then again, not surprising. Probably anxiety contributes to inflammation as well (Just a guess). Thank you.

[Nicole_GCCA Partner]

Thank you Hidden for your advice and for sharing your experience. Some of the best coping tips and tricks come from community members like you, so thank you!

MathPerson, please be sure to read all instructions carefully. Whenever something is being inserted into the rectum, be gentle, and also take precautions to ensure a clean environment/reduce the chance for infection. So when it comes to cleaning the syringe after use, as well as if the water is recommended to be distilled or boiled first, please look into that before using.

wbiC - and advice you have here would be great.

Risk for infection is why I'm wary of places that offer colonics - I've heard horror stories of people getting infections and/or injuries. Definitely not something you want to experience especially since you are seeking relief!

Please be sure to let your doctor(s) know about all over-the-counter remedies you are using.

There are teas and other natural laxatives that you might want to research as well.

Hydration is key when you are experiencing constipation and hard stools.

Keep us posted - hoping you get some relief soon.

~Nicole @ GCCA

[Math_Person in reply to Nicole_GCCA]

Many thanks Nicole. I already drink distilled water only, so I have a good supply on hand!!! I'll heat it and use it, thank you!