Slow transit constipation and surgery

I am sharing this in hopes that someone here might have suggestions as I seem to be running out treatment options.

About two years ago, I went from a lifetime of excellent digestion to digestive misery. Within the space of 5 to seven days, it was almost as if my entire digestive tract went on a kind of work slowdown and it has been there ever since. Symptoms are: constipation, bloating, pain, every stool type imaginable but not usually normal. And gas gas GAS. I never knew a human could produce as much as I often do. Pain in the lower abdomen is present more often than not, and tends to be localized in a particular area. I have lost about 80 lbs. since onset and cannot put on weight regardless of what I try to eat. Malabsorption is apparently a big factor.

The official diagnosis is chronic pancreatitis as part of IGg4 syndrome. This has supposedly been confirmed with both bloodwork and a needle biopsy of the pancreas. But I think what is causing my discomfort is some version of SIBO, as I cannot imagine anything but some kind of bacteria causing this kind of gas and bloating. I take Creon for pancreatic insufficiency and seem to do better with it, but I am still losing weight.

The docs seem to think I am an unusual case. The oddest thing about this (to me anyway) is how rapidly it started.

Thanks

I’ve had same symptoms. Turned out to be partial obstruction of intestines turning into full obstruction. Had multiple obstructions due due adhesions and scarring from RE sections
Now take Linzess 290 and Colace (softener) which has been working.
Good luck

I sure feel for you. When I was about 30 I ate an apple. No big deal but my stomach hurt afterwards and I became bloated and constipated and it lasted a full week. I spent years with reoccurring episodes and I never knew why. They always lasted about a week. When I was 60 or so, I finally became lactose intolerant which led me also to learn about FODMAP. Foods high in FODMAPs, I learned had to be avoided. I didn't have any idea about what was even about but now I follow the FODMAP diet and avoid all the foods high in FODMAPs. For example, foods that are high in FODMAPs are onions, garlic, pitted fruit, (apples are high also), beans.........I would encourage you to look online at information about it. It might be worth a try. I've learned through trial and error that there are a few things that I can tolerate without the week long side effects but I didn't try anything on the list of offenders and stayed with the low FODMAP foods. A good website: https://www.monashfodmap.com/ibs-central/i-have-ibs/starting-the-low-fodmap-diet/

Hello @jim70 and welcome to Mayo Clinic Connect. I am sorry to hear of your digestive difficulties. I have personally had 3 surgeries of the upper digestive tract for carcinoid cancer and I understand how volatile the digestive tract can become. I have a few suggestions that might be helpful.

First, I would suggest that you keep a food/symptom journal and write down everything you eat/drink and also record the type and severity of your symptoms. You might also jot down any activities that you are engaged in such as walking, other types of exercise, and also note any stresses you might be experiencing. This can be a good way to investigate what foods or behaviors are the main offenders or are helpful (such as walking after meals).

Another suggestion is to ask your doctor for a referral to a registered dietician at your medical facility. Dieticians can be very helpful in helping you modify your eating plan to produce the best health benefits for your digestive problems.

Have you tried any of these suggestions? I look forward to hearing from you again.

Will you post an update?

Heartfelt thanks for all the sharing and good advice here. The PA has put me on a course of Flagyl (again) which seems to help some. I have been given Xifaxan in the past and it has helped, but the price darn near puts it out of reach. I know from experience that benefits of antibiotics are limited but I will take whatever relief I can get. I have correlated a few foods--just generally--with worsening symptoms but haven't kept a food diary yet. Too much fat, or uncooked vegetables or fruit can put me in a tailspin. But the whole thing is so quirky anyway.

I have wondered about adhesions and I don't know if any of the numerous scans would have shown them. I take it they can be hard to image with scans ?

I am also trying a few of the non-pharmaceutical antibacterials such as oregano, garlic etc. Too early to tell there. The doc wants to place stents in my pancreas. This comes with substantial risk of full blown acute pancreatitis so I have declined this.

Jim

Hi @jim70

I can understand your frustration. I would like to connect you with some other members who are dealing with pancreatitis. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/pancreatitus-1/?commentsorder=newest#chv4-comment-stream-header.

We also have a discussion on the topic of the Fodmap eating plan which @donnacarp mentioned in her post above, https://connect.mayoclinic.org/discussion/fodmap-eating-plan/. I know you are looking for something to help and this eating plan might be worth a try.

Finally, as you mentioned the possibility of scar tissue (sometimes referred to as adhesions) being a problem, here is a discussion on that topic. From what you will read, scar tissue might not be easy to diagnose. Here is a discussion on that topic, https://connect.mayoclinic.org/discussion/abdominal-adhesions/
I would specifically like to invite @thull and @astaingegerdm to this discussion. They might be able to help answer some more of your questions.

I hope you get a handle on an eating plan and meds to help you. Will you please post an update as you are able?

Hi, I’m new here and see your post is old. I’m having colectomy for severe constipation and motility.I have not passed a stool in 14 months.I only pass water with laxatives which I’ve been on for 14 months.I also go to PT. I’m scheduled end of September for colectomy. I’m terrified but have no life living on laxatives. I have tried it all. I’m 66 and so afraid but my life is terrible like this. I’m also allergic to pain meds so that’s another issue.not sure if you’ll ever read this. I’m new to site looking for any info.
Thanks…Joanne

Hello Joanne I just had to write to you. Even though my situation is different than yours, my heart goes out to you. I was given an antibiotic that wreaked havoc in my body. Clyndamycin was prescribed for a dental issue that left me with a bacteria called C-diff. I truly thought I was going to die. I was very sick. Then I was given Vancomycin to fight the C-diff. I was terrified to take another antibiotic. It did work though and got rid of the C-diff. But I've been left with having to rely on meds (laxatives) to have any elimination. I understand how you feel like your life revolves around this issue and sometimes it's terrifying. I understand. I hope that someone writes back to you that has experienced what you are going through specifically. I kept reading and writing about my issue and I had a lady respond to me about what her son has gone through and I'm now beginning a regimen that worked for her son, and he spent two decades trying to find something that worked. I'm hopeful. And I'm hopeful for you that someone reaches out to you. Sometimes the patients and their experiences can be more helpful than the doctors. You will be in my thoughts and prayers. Jacque

Thanks for writing. C-diff can be awful for some and not so bad for others. I retired from a hospital lab but never was on the hospital floors to talk with patients. My body is so used to laxatives that sometimes they stop working. If I at least had 3 bowel movements weekly this surgery would not happen. I just have never heard of someone completely stopping passing stool. I always suffered constipation but had it in control. Just last June 11 it stopped and nothing has happened. It is just so weird to me. I’ve seen so many doctors and also doctors for second opinions and everyone says it won’t come back either live this way or remove colon to shorten distance and it should be fine. I’m hoping someone reaches about about colectomy recovery.it would really help to get a perspective from someone who has done it. Wish you all the best, Joanne

Hi Joanne Actually, I know two people that have had some of their colon removed. They are both doing well. The one lady, probably 60 years old, just told me recently that she was SO glad she had it done. I can understand how you think it's unfair and so strange. I will tell you that I've NEVER had, as an adult, three BM's a week on my own. No one ever suggested a colectomy to me. But I can see if the laxatives are not working anymore that is a horrible issue. I'm so sorry you're going through this. And to top it off, the world around us goes on and everyone expects you to go on as "normal". I find on the days that I take the laxative, I'm so weak and uncomfortable, and restrained to home, etc., etc., that it is difficult to be "normal". I will be thinking of you and hope this surgery is a beginning of a new life for you that is so much better than what you have been dealing with. God is watching over you. Please keep me posted. I want to know how you are doing. And I wonder,....I may be facing the same as you. It's unnerving to have to depend on laxatives for normal bodily functions. I was told that the Bisacodyl is considered a stimulant and will not make you become dependent upon it. Hmmmm,....I questioned that from the beginning. But I was told they have changed the content of it and apparently that shouldn't happen. Then why do I need it to have any elimination? I have also changed to something called PruneLax which should be easier on my system. Maybe I mentioned that before in a previous message. I'm just beginning on it and it may take a week to adjust. I'm hopeful. It is a natural product VS chemical. I hope it works. Best wishes to you Joanne. And like I said, keep me posted. I really do care. Jacque