Severe post-surgery pain after eating, seeking advice

Hi, this is my first time here, thank you all for sharing. This forum has been a partner since I got my surgery. This is my story:

10 weeks ago, I had a hemicolectomy after an intestinal invagination and a tumor removed. In total, they removed about 20 cm. The surgery went well, but after a few days, the suture failed and they had to operate again, putting me an ileostomy to take care of the healing intestine. A week later, there was another infection that was treated with antibiotics. Beyond small pains, after that, everything was going well until about 10 days ago when I started having a terrible pain that got worse after eating anything. The pain started in my stomach area but then radiated around my ileo, sometimes around my right ovary. It's really confusing. I went to the hospital, and they did all kinds of analytics, CT with contrast, ultrasound, and FX. Beyond a small collection of liquid (in an area where it doesn't hurt), they find nothing. The pain improved after several days of strong analgesics, but now it came back every time I eat something, whether it's rice or pasta. I mean nothing too heavy. The doctors tell me that in the studies, nothing strange comes out and that perhaps the pain is due to the rearranging anatomy, but it is really reeeeally strong. Anyone with a similar situation? I do not know what to do anymore. I can't deal with this every day, and I start to not want to eat to avoid pain.

Thank you all, cheers!

Way back when, I would have a terrific pain after eating a mouthful of anything with my Crohn's. When you put something in your stomach, it starts a whole bunch of processes going, many of which are preparing to process the food a while before the food actually reaches the affected segment.

It's possible that you have Crohn's or UC and just haven't been diagnosed yet. That would be rare though because when it happened to me, I had so many fistulas a blind man could tell from the films it looked like I had taken a shotgun blast to the gut.

Hang in there, but don't just accept the pain. It's trying to tell you something!

Dave

Hi linyera,

Any pain such as you describe needs to have the cause identified and treated. If I were you, I'd find another Gastro ASAP! At the very least, they can do a CT scan when you are experiencing the pain, without taking a contrast, assuming you don't live too far from the ER. Or if you get the pain reliably whenever you eat, they should image your gut when you are pain-free, then feed you, and then image you again when you feel the pain. This would tell them if you are obstructed, bloated, etc., and where. They could do the same with an MRI, but without contrast, it's a bit more difficult to decipher. Find better doctors.......it's 2019 and this stuff isn't rocket science anymore! I realize that might be harder said than done, but it's YOUR responsibility to find doctors who can help you.......and don't be afraid to tell those who don't help to hit the road and then try someone else. And do this quickly, as you could have a perforated bowel, fistulized bowel that's leaking, or something else that could lead to sepsis......which can kill you. If you have an elevated temperature, you may have a serious infection so go to the ER now, and don't leave until they tell you what the hell is going on! Let us know how you make out!

Regards,

Bob

Hey, thanks for your answer! They already did a CT scan with and without contrast, and everything looks fine. Also, my debit has been fine all this time, I mean it doesn't look like an obstruction. I have already been seen by a gastroenterologist, my oncologist, a colorectal surgeon, and a few general doctors because last week I was in the hospital for 3 days because of this pain, so they did every possible exam and they found nothing wrong (unless liquid in some areas that may be due to recent surgery). The theory is that, because of the intestinal piece missing, everything is still moving and looking for its place, and that hurts. Do you think that's possible? nbsp

Hi linyera,

Frankly, no.....I don't buy that explanation. And I'm not trying to be a wise-ass. You can certainly have some discomfort as your internals settle into their new positions, but not severe pain. After my operation, I'd get pain in my gut if I slept on my back for more than 15 minutes. It was a dull aching pain that would subside a few minutes after I moved off my back. Had it checked out and it was my intestines putting pressure on my gallbladder in that supine position. Over time, it decreased and is now not an issue.

I know you've been scanned, but I've seen with my own eyes two radiologists read my same scans and come to completely different conclusions. So what I'm saying is make sure your gastro is using a radiologist who he or she knows is familiar with IBD conditions, and have your doc request the same radiologist read your scans going forward. The other thing you can do is help your doc by taking notes. Record what you eat and when, and how quickly after you eat the pain starts, how long it lasts, etc. Check for blood in your bag, etc. Also, check your temperature a couple of times a day. Pain sucks! I hope they figure this out ASAP!

Regards,

Bob

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi Linyera, I don't have any experience in the problems you are having. I have to agree with Bob. I would continue pushing your doctor to find the problem. The ideas he posted for you to help collect info for the doctor sounds like a good idea. Hope you can find some relief soon. Please keep us updated as you never know when it may help some others. Best wishes, Jean

I had a complication from my surgery, but the surgery for my ileostomy was in September of 2018 and in February 2019, I got a blood clot. It started with hunger pains on steroids, and when I ate, it made it worse. I was passing food to my bag, so I went 5 days or more, but the pain spread to my sore back. I finally was talked into going to the hospital, and after the CT scan, they found that from my intestine and spleen to my liver was full of blood clots in the artery and had to be removed surgically. After that, I was good other than taking blood thinners for 6 months. They think I did not stay on blood thinners long enough after my surgery in September.

Hope you feel better.

Hello Linyera.  Sorry to hear about your problems and we can all empathise with you on the pain front. 

As Bob has already posted most of what I might have said, I would simply endorse that - especially the part about keeping a diary as it is surprising what insights it can reveal when looking back on these incidents in detail.

On the ocasions when I was having agonising pain, I started keeping a diary and it quickly revealed that the pain diminished considerably after I had farted! That really said it all ,and I then needed to find ways to circumvent that happening. I know that trapped wind doesn't sound very serious, but the pain certainly is.

In my efforts/experiments to resolve the problem, I found out that my peristomal hernia was very tightly blocking the exit to the stoma and the wind was not escaping. Once I had identified the problem and found my own solution, I have had very little recurrence of that particular problem. Incidentally, after trying many different things, my solution was to use a stoma plug which lets the air thorugh at the same time as keeping the stoma tube open. 

I hope you find a solution to your problem soon.

Bill, I also have a peristomal hernia; and I've been having some new sharp pain to the right of my stoma these past few days. My output has been totally fine during the pain, so no obvious blockage suspected. I've been applying a hot water bottle to the painful right side area and sipping a lot of hot decaf tea which seems to help. After a while with the hot water bottle last night, I heard some stoma gurgling and was surprised to see a lot of bubbles in my bag. So I'm thinking my issue may also be trapped gas or wind (which is a huge relief because I was starting to worry that maybe it was another hernia or some organ issue starting). What exactly is a stoma plug? I've never heard of that. I was going to try taking Tums or something like that, but I'm not sure if that'll help. Any other suggestions for freeing the trapped gas?

Hi OU812,

One way to free trapped gas that I rarely hear people talk about is using an inversion table. When you invert, trapped gas may have a way to work itself out. I don't think much study has been done on using inversion tables specifically for this purpose, but they sure work wonders on your back... so think of it as a win-win. As always, discuss with your doctor first, as some folks have ailments that may preclude inversion.

Regards,

Bob

Hello OU812. 
You ask 'what is a stoma plug':  The ones I use are made by Coloplast and there is a photo of one on my profile page under photos. As explained, the plug is made of a sponge-like material which lets the gas through but not the faeces. (or that's the theory! but it depends on how liquid the out put is) I hope this helps you envisage what a stoma plug is.

Best wishes

Bill

I found that lying on my left side helped me get gas to move the last time I had too much soda. It took about 20 minutes.

But if this is an ongoing thing, I'm wondering if you have some sort of stricture too.

Dave

Hi everyone, I have a question. Okay, maybe some help with pain too. It's upper stomach and back. It's a pulling feeling. And when I eat, it's been very crazy. I sometimes feel better or worse. What's a stoma plug? I have an ileostomy that prolapsed, but doctors say it's okay. And a hernia to watch. I'm drinking grape juice, it seems to help with going poo. I always keep grape juice and peppermint tea, really a lot of teas, and coffee. And I was trying to eat different stuff and helping my nephew. Well, I was showing him how to bake cookies, so I ate a few every day and M&Ms this past couple of weeks. And I think I'm feeling more pain and discomfort. I don't know if it's from candy and gummies... I seem to have a problem with many foods I eat. And I'm saying eggs, pancakes, chicken, turkey, potatoes, and sweet potatoes. I can only have a few bites, they would make me have a blowout all the time.

Hello NewlifeVictoria.  A stoma plug is used to prevent output instead of a bag. There is a photo of one on my profile if you want to see it properly. However, unfortunately, it would probably not work very well with an ileostomy  because the output tends to be steady, liquid and too much for a stoma plug to cope with. It is only really useful for those of us who are fortunate enough to be able to irrigate and therefore have little or no output, so it becomes a failsafe, or comfort blanket in case something minor goes amiss. As mentioned in my post, the stoma plug (incidentally) lets air through,so prevents a build-up of gas. 

I hope this is helpful in answering your question.

Best wishes

Bill

Hi Bill. Thanks! Yes, it did answer my question. But I'm trying to figure out what to do for gas and pain... And ileostomy is definitely different than a colostomy. I had that as well in my first surgery on October 22, 2013. But anyway, thanks for replying back to me! Have a great day!! Victoria 

In my experience, the best "cure" for gas pain is walking.

The best preventative is to reduce air intake. No carbonated drinks. That stuff just seems to expand and expand once it's inside you. 4 oz of soda can take a couple of hours to clear! Don't drink through straws; the straw has more air in it than you realize. Chew really well; that will release the air hidden in the likes of baked goods etc...

Gummies?!? Dear god, are you suicidal?!? LOL

What's your output like? If you can figure out what went in based on what came out, then you probably aren't chewing enough.

Keep a food diary and a pain diary. You might be able to compare them and find foods that cause you problems.

Dave

Hi Linyera, I was just going back over some topics and saw this one from you. I was just wondering if you had found out what was causing your pain. I hope you found help for it. Please update us if you feel like it. Sometimes when we find answers to some of our problems it may help some others. Best wishes

I'm not sure you're talking to me? Merry Christmas and a happy new year! I don't understand why I'm treated like I'm not being honest, but I am and not many replies back to me? Anyway, I guess no one likes an angel and I only want to say I'm not here to just complain. I'm here to maybe find very good people that care about a person with a big heart and not judge me... also a great personality, champion, and unconditional love and respect... I hope this message finds EVERYONE in good health, happy, and doing great. May you have a great new year 2020. Everyone reading this, Victoria.

Hello Victoria. Thank you for your message wishing us all a great New Year and I wish you the same sentiment. 

Also, I do hope you find a solution to your pain problems. Sorry I wasn't able to be more help in that department, but, when I cannot find answers to my own problems by immediate correspondence, I usually resort to surfing through past posts in the 'collections' section. There I find many of the discussion threads had previously dealt with almost everything I might wish to know about managing stomas. Plus, there are many other associated problems that have been discussed over the years , which I find quite interesting. 

Best wishes

Bill

Bill, hi! Merry Christmas! Thank you very much for replying. I appreciate it very much! I hope you have a great day! Thanks for the info, Victoria. 

Hi Victoria, sorry you feel like there was not enough answers to your question. I don't think anyone was trying to ignore you. There was a lot of replies about pain because someone else had some pain problems also. So the answers could have been for both of you. Please continue to ask questions. Happy New Year to you and I hope you will take the advice to continue to seek a doctor to find out your problem. Good luck.

Lovely, thank you for your message, and I hope you had a great holiday. Merry Christmas and happy new year! I don't see anyone saying anything about pain. I'm really not writing much about what I go through as I go through stuff no one does, and I really appreciate anything. Maybe some feedback would be appreciated so much, and I'm under doctor's care. I'm waiting for a call back now as I understand it was Christmas, but I'm going through a lot and wanted to ask some questions and maybe get answers! I hope you're having a good day, year, and happy. I appreciate you writing. How are you? Have a wonderful day and a very happy new year! Sincerely, Victor

To everyone who is here, I want to first say hello and it's nice to meet you here! Merry Christmas and the happiest New Year!! I hope everyone had a very nice Christmas. I was very uncomfortable, but anyway, I'm trying to figure out stuff and I have been talking to others and doctors. I go often for check-ups. Anyway, I'm still waiting for doctors. Yes, it's Christmas, but there are days in between that I could go get a CAT scan if nothing else. I have also been going to the bathroom, so I'm trying to eat a little and baby foods and smoothies. It's been a lot for me. But here, I wish you a very healthy and happiest new year!! I'm here also and open to different diets and vitamins. Or tell me your story and always here to listen and take advice... Thank you for everything and hope to hear from everyone. NewlifeVictoria Sincerely, Victoria. Have a great day!

Hello

I have read your post .... and there seems to have been a cycle of events.

And intermediate points where things have happened and then short-term improvements.

Perhaps you may need to be persistent in order to have another scan to check ...

In my own experience [not related to your own particular circumstances] but nonetheless - I have found that despite reparative surgery - and even after a time of OKness - then can be a further slippage of a section of the small bowel which may pertain whereby it may be so arranged against your abdomen wall, that it becomes 'trapped' as the system begins to work .... So although there is no hernia or apparent external symptom [physically apparent] - just perhaps there is a movement and a section of your bowel becomes trapped against the stoma - hence the pain immediately after eating, i.e., once something enters the system the 'peristalsis along is promoted and just perhaps that is when the intense comes when the 'trapping' occurs .... you may need a further scan.

The point is - NEVER give up - just because scans have not shown up any particular cause in the past does not mean to say that the current situation is not a 'new' development.

Good Luck ....

But please, do not make any presumptions - just persistently ask for a re-evaluation.

Best Wishes

Jayne