Struggling with Stoma Function - Need Advice!

Hello everyone! I'm a fairly new ostomate (had surgery April 2020) and since having the surgery, even in the hospital, I've had issues. Right after the ileostomy surgery, I had a nasogastric tube put in after having a cup of chicken stock, and wasn't able to eat anything for a week (they gave me ice chips). I wasn't supposed to leave the hospital until I was able to hold solid food down, but, since Covid-19 was in effect, they discharged me sooner.

I lived on a liquid diet for 2 months after surgery, and then started to introduce a little solid food in slowly. I haven't introduced many food categories into my diet because with the little experimentation I've done, I get partially blocked, causing me to have to drink my brains out. I chew my food until it's mush. I drink plenty of liquids (chicken stock being my favorite), and no matter what I do, liquid will bypass the food I take in, and the solids get stuck. I've been living on eggs sometimes with a couple small cubes of avocado or roasted potatoes for literally 4 months. I eat once a day, at dinner time because of this reason. . . I wake up every night at 2-3AM with no output and drink liquids like no one's business. The only thing that is helping me along is the fact that I take Reglan 4 times a day.

Is this normal? Is this my new life?

Any help would be greatly appreciated!!

Thanks in advance,

Gemini

Hello Gemini. 

Welcome to the forum and thanks for your question. I don't have an ilieostomy, so cannot contribute specifically about that. However, I feel sure that there are lots of people who can.   Meanwhile, I would encourage you to take a look at some older posts on the subject, which can be found at the top of the page in 'COLLECTIONS' --> 'Premium content' --> 'iliostomy'.

I often wander through these old posts to educate myself into the wisdom of previous ostomates on all sorts of subjects.  I suspect that the problems and solutions are much the same from one generation to another.

Best wishes

Bill 

I don't think this is at all normal.

I've had an ileostomy for many years, and have never had problems like you are having.

I strongly suggest that you consult with a new colo-rectal surgeon for advice.

Best wishes.

Hi, Gemini16! Sorry that you're having these issues. Your instincts are correct that it's unusual to experience partial blockages when you are eating only soft foods + hydrating well. On that diet, you should be having easy output! However, I nearly had a blockage when I ate too many mashed potatoes, too fast...so potatoes can be a problem for some in the "right" circumstances.

When someone has a situation such as you describe, it could be due to an anatomical feature partially blocking output. Muscles in the abdominal wall can form a ring around the intestines, the ileostomy may make too sharp a turn as it exits the abdomen, or another feature of your anatomy may be involved.

Most concerning is the possibility that some of the small intestine has kinked itself a bit, but not enough to stop blood flow to the intestines or completely block food passage.

Probably a good idea to go back to your surgeon to have it investigated or consider a second opinion. Sooner rather than later.

Wishing you all the best,

NWAO

Hi Gemini, other comments are right. You need to see your surgeon or your regular doctor. I've had my ileo for 35 years and had problems like yours from scar tissue due to Crohn's. They probably need to do a CT scan with contrast to look for a kink or stricture in the bowel. Good luck.

Thank you for your reply, Ron. I had a small bowel study and they found nothing. I get burning under and around the stoma and in the large intestine and colon... I went to a colorectal surgeon and he said you have a very complex problem and no doctor in the area deals with your issues. He recommended Cleveland Clinic.

Thank you so much for your input.   I actually was wondering the same thing with the abdominal wall. Will look into that!   I just haven't felt well before and since surgery...

If you don't mind, I have a couple of questions for you, or anyone else who would like to reply.

Is it normal to feel pressure behind the stoma?  When I feel that, I press on the top of my flange and usually air or thick output will come out. Is that normal?

Is it normal to be very "airy"?  I wake up full of air no matter if I eat dinner the evening before or not, but I'm more "airy" when I eat dinner the night before.

Once a week I have a day when my stoma is on overdrive and shooting liquid output like he's on steroids, but other days of the week he's just a lazy bum.  Is that normal??

I drink Chicken Broth throughout the day and most of the solids from the chicken broth don't come out with the liquid, and I usually press them out. . . Normal?

Even eggs and coffee "solids" make my stoma "putt" and come out slowly and very thick. . . I drink copious amounts of raspberry water and try to flush myself out.  Is this how it's supposed to be??

My eggs for dinner start trying to come out before I'm even finished eating. . . is that normal?

Again, Thank you sooooo much for replying to my original post.  It means a lot to get comments and advice from anyone who takes the time to reply.

Gemini

Happy to help, Gemini! I would love for the rest of this community to share their experiences, too. We are better together. Many of your questions don't have a clear answer (sorry!), but I'll do my best.

1. Pressure behind the stoma: Some people might feel this when a thick bit of output is passing through. Pressing on the flange may force more air/output out. Massaging around the stoma can be done, but best to be sure your flange is not bruising the stoma/peristomal skin. It may be better to use a knee-to-chest position or warm shower (I realize you may not want to take a warm shower in the middle of the night!). However, pressure behind the stoma can also be a sign of a hernia and/or bowel obstruction. Best to follow up with a surgeon or other healthcare provider.

2. Passing air: What you described sounds pretty normal. If I manage not to wake up in the night to empty (rare), my pouch has a lot of air. Reglan may be increasing this for you.

3. Stoma active some days and less active others: There could be a lot of reasons for this (liquid diet, Reglan, etc.). When we eat a primarily liquid diet, the GI system becomes less able to absorb nutrients and increases the liquid output. Reglan may also be playing a part as it keeps the GI tract moving. Side note, a dietitian consult might be of benefit.

4. Output coming out in "spurts"/before finished eating: Output can look like spurts because of the change from higher pressure in the stoma to the lack of pressure outside. Also, the rhythmic small intestine muscle contractions (plus Reglan) on the output make it "spurt." Mine absolutely does this and I've seen several others act like a fountain, very inconveniently! Everyone's output time is different depending on what they ate, what was in their GI tract already, how much small intestine they have, etc. For some people, it is not unusual to see their food as output within 20-30 minutes.

Normal is different for every ostomate. Best to follow up with a surgeon, GI, and/or ostomy nurse if you have concerns.

Wishing you the best,

NWAO

Gemini,

They should not have discharged you unless you had normal output from your stoma. Your description sounds like an obstruction. But it can also be caused by how large the hole is cut on the wafer (either 1 or 2 piece pouch system). How does your stoma look? And how large is it? An ileostomy stoma should be about the size of a small strawberry and have a healthy red hue to it.

If the hole for the wafer is cut too small, it may constrict the waste from voiding properly. You would know because your stoma will swell to about the size of a plum or tangerine and you would have the pressure you describe plus the episodes of overdrive waste. The hole for your wafer should be as wide as the largest circumference of your stoma. It may expose a small portion of peristomal skin, but you can use a skin barrier to protect it. Hopefully, it is that simple. If not, you should speak to your surgeon or get a second opinion. Do you have an ET nurse? If so, speak with him/her as well.

Bain

Hi Gemini, the pressure behind the stoma is what I felt before I had resection surgery 2 years ago when my stoma shrunk to the size of my pinky, about half an inch long and about 3/8 of an inch wide. I always had pressure behind it and it got worse after meals. After surgery, my stoma sticks out 1 1/2 inches and is about 1 inch in diameter, and the pressure is gone unless I eat a hearty meal. I would definitely get a second opinion for peace of mind. Good luck.

Gemini,

An ET nurse is an Enterostomal Therapy nurse. Before your surgery, a decent surgeon would have had you consult with one so you would know the ins and outs of having an ostomy. If your surgeon didn't suggest one, then he is a moron...lol...sorry.

I can't recommend a surgeon in my area since I had my surgery out of state but one of the other members might suggest one in NJ or NY. I did find a link for an ET nurse in Dubois, PA through Interim Health Care. Check out the link below.

https://www.interimhealthcare.com/duboispa/our-services/wound-care/

It sounds like your stoma is healthy and that you're doing everything right. But you shouldn't have to be limited to what you are eating. Below is another link for an ostomy food chart that shows how foods affect you.

https://www.ostomy.org/wp-content/uploads/2020/04/Food_Reference_Chart_2020-04.pdf

If you can't find a surgeon or ET nurse nearby, it might be wise to consult the Cleveland Clinic. But prior to that, look up Enterostomal Nurses in that area or in your area. And with COVID going on, you might be able to get a video consult. Keep us informed on how your search goes.

Bain

Thank you for taking the time to answer my questions!

Thanks, Bain!  I appreciate the help.  I will look into the two links you provided.  Off topic, awesome ride (motorcycle)! 

Hi Gemini 16,

There have been a lot of great suggestions and experiences written here, especially from the nurse. She has put forth the wisest suggestions for aid to your problem. I myself have had blockages, some caused by my own silliness and some by other physical issues. I have overindulged in things like mushrooms, etc., and had to pay down, apply heat, drink a little, and eat crackers (typical remedy to get something to pass). I have also had a hernia and constriction due to scar tissue that caused issues. If your situation does not change, then I would definitely seek out a doctor (GI or surgeon who is really experienced with ostomies) who will have you go through some testing and radiology to verify your true physical condition in order to see what could or could not be an issue.

Best of luck and never give up!

DAVE

Hi Gemini, I find if I'm constipated or my bowels slow down, I drink plenty of fresh orange juice or anything fresh like mango, apple, plenty of fruit. Prunes are good too, they will get things moving. If nothing natural works, try senna or dulcolax or Epsom salts???

I think you need to look at your diet as well. Eggs are very binding, like bananas. Anything with bran or fiber should help too. (Fibregel sachets)

Take care, Adam