HealingWell
Search Close Search
☰

Post-op recovery (permanent ileostomy/completion proctectomy/jpouch removal)

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/2/2017 8:12 PM (GMT 0)
Hey all,

I had my Jpouch removed (see www.healingwell.com/community/default.aspx?f=38&m=3263001&p=7) 6 weeks ago. My perineal wound is doing quite well, but I am having a lot of issues with digestion still.

Eating causes what feels like gas buildup behind the stoma and generally it seems like output comes out painfully and slowly. Sometimes I feel stuff moving powerfully through my abdomen and can see my abdomen "inflate" and "deflate" in certain areas as stuff painfully moves through. If I eat a heavy meal, I find myself doing very poorly and becoming really nauseous. I am very low weight and malnourished, so I have to eat. I have tried gas-x, peppermint oil, and a few other remedies to help.

I am managing by eating many small meals over the day and continuing to use pain meds I think I otherwise would not need. Has anybody else experienced this after jpouch removal/other resection or surgery resulting in ileostomy?

Thanks.
Posted 3/2/2017 10:38 PM (GMT 0)
I don't remember having those specific issues but did struggle with eating in the first month or so. I started using a probiotic with digestive enzymes specifically for gas. It really helped me so much so I still use it everyday.

It was called Digestive Advantage Gas Defense but they renamed it and the newer version I've seen at Walgreens just says enzymes plus probiotic. I think it helps with my digestion and odor with the ostomy.
Posted 3/2/2017 11:04 PM (GMT 0)
I looked it up. The current version (same formula new packaging) says Digestive Advantage Daily Probiotic plus Fast acting Digestive Enzymes
Posted 3/3/2017 1:22 AM (GMT 0)
Was also going to mention ginger capsules. Those helped me a lot as well. Taken before you start eating can rev up your digestion to help break these down, also helps with gas and nausea.
Posted 3/3/2017 12:48 PM (GMT 0)
If you are very underweight, increasing your food intake will be painful - this is seen in anorexia (not that I am suggesting you are anorexic; you have had other reasons for not being able to eat normally). In your case, your intestines will still be recovering from surgery and producing additional gas, making it even more difficult.

Carry on eating as much as you can - eating lots of small meals is the way to go. Your intestines will eventually adapt, both from the surgery and the extra food.
Posted 3/3/2017 3:14 PM (GMT 0)
I was told it is more beneficial for people with ileostomies to eat six small meals a day. I don't do that, but I don't suffer with the issues you are having. Perhaps it would help with your digestion.
Posted 3/3/2017 5:27 PM (GMT 0)
Are you sticking to the low residue diet that is suggested for after surgery?
Posted 3/5/2017 1:49 AM (GMT 0)
Taking probiotics and ginger. I have been on low residue, although introducing other food hasn't really changed things. HOping it's just a matter of a little more time.
Posted 3/5/2017 1:29 PM (GMT 0)
I don't have an Ostomie ( Yet) but do have Crohns . When my digestion is bad I stick to home made soups and put in blender make smooth . Also rely on shakes made with Kiefer for probiotics . Make sure your water intake is high to help push things through . Be well soon .
Posted 3/5/2017 8:57 PM (GMT 0)
That stinks. Are you chewing everything up a ton? Maybe you should incorporate some health drinks until you get better? I remember I was able to eat just about anything shortly after my ileo, so it worries me that you're struggling. I had a blockage (i think) once, and it felt the way you say you feel. I hope things get better with time.
Posted 3/6/2017 3:14 PM (GMT 0)
You had a huge surgery. I think your body is taking longer to adjust than before.

The difference in my first surgery/ostomy and my final surgery were night and day. My first surgery I was out to lunch one week later eating almost normal. That was not the case with my last surgery. For awhile I could eat so little at once I would wake up in the middle of the night starving and eat cheese and crackers at 1 am.

I wasn't prepared bc the times before were so easy. But I was sicker and it was a much bigger surgery. Having your pouch removed is an even bigger surgery. Things didn't normalize for me until around 3 months.

I hope you keep seeing improvements. I had a hard time being patient.
Posted 3/7/2017 7:14 PM (GMT 0)
Honestly, I am a little worried like NSSG. 3 months sounds like a very long time and I'm halfway there. I hope you're right, but my experience has left me with very low expectations.

If thing don't improve soon I am afraid we're going to have to investigate, starting with an MRI...
Posted 3/7/2017 9:20 PM (GMT 0)
Hang in there Solomon, had my op 12 months ago and had pretty much identical symptoms as yourself. It took about 7-8 months for me to come to grips with all the annoying little niggles. I'm 74 so it won't take you anywhere near as long. I think a lot of it (in my case anyways) was trying to get my head around it. I'm getting there with a bit of herbal help and a fantastic wife and family.

Best of luck to you.
Posted 3/8/2017 4:18 AM (GMT 0)
SolomonSeal,

I have a colostomy. I can see and feel food go thru my system in specific places. At first it was really painful but as time goes on it is getting better. I still feel some pinches and sharp pains when my stoma is working hard. Eating 6 small meals is much better than 3 large. The large meals slow everything down and if I don't drink enough I can find myself in trouble...pain and pancaking..

I chew everything 50 to 75 times. Even with a colostomy I have to drink 3 16oz bottles of water in the morning and 3 in the afternoon...plus my juice and tea and lemonade... I fairly slosh alittle at times but it helps tremendously.

Clo
Posted 3/14/2017 3:25 PM (GMT 0)
I'm two months out and something really seems wrong.

I feel like when food/gas reaches a point just behind my stoma I get terrible pressure, bloating, pain, and nausea. I haven't been able to get off of pain med at all since surgery. It's like output arrives below the stoma and then it stops up there and the area balloons some. If I press on the bulge sometimes gas will "pop" out.

I've been pretty glum about this. Trying to get in touch with my surgeon.
Posted 3/15/2017 1:11 PM (GMT 0)
I used to get those symptoms with a stoma occasionally. The area immediately behind the stoma is prone to getting blocked, 'cos the stoma has to be bent at a right angle to go through the stomach wall. What is your diet like, what sort of things are you eating?

Also, the pain meds may be slowing your system down as well, particularly if you are taking opiates/opioids. Laxatives can speed things up, but talking to your surgeon first sounds like a good idea. Do you have a stoma nurse as well?
Posted 3/15/2017 1:38 PM (GMT 0)
There's no way this is normal. I've had a stoma before and this never happened. My diet and the pain meds are definitely not the issue, I'm two months out now and should not be in this much pain.
Posted 3/15/2017 5:20 PM (GMT 0)
Yes, you know how you feel and if you feel something is not right, get over to your surgeon ASAP. We all know our own bodies and sometimes doctors try to tell us how we are feeling and I can't stand that. Insist on having an MRI or CT scan to see what is causing the problem.
Posted 3/15/2017 6:52 PM (GMT 0)
Well okay, I said you ought to speak to your surgeon (or a stoma nurse if you have one). I might be wrong but what you are describing does sound very similar to partial obstruction symptoms. Reason I asked about diet is because some foods are more likely to cause an obstruction than others.
Posted 3/16/2017 3:19 AM (GMT 0)
i can't believe you're having such bad luck. it's definitely not normal. when I had my ileo, i was almost 100% within a few weeks. I agree, maybe it's an obstruction. sad I just hope whatever it is, it's easily fixable. you deserve a long break from all this.
Posted 3/16/2017 11:59 AM (GMT 0)
I didn't mean to brush off what you were experiencing as normal and I hope I didn't come across that way - if I'm tired I get a bit brusque sometimes. I definitely think you ought to see your surgeon and get a scan to see what's going on.
Posted 3/16/2017 2:56 PM (GMT 0)
NCOT- I'm sorry if I replied curtly. I'm just sensitive to hearing the same old "are you eating GI soft, take your pain meds on schedule, sometimes it takes more time" mantra while I drop to a BMI lower than 16 and have way too much pain/nausea/other symptoms. I also have had ostomy surgery before and this is very different. Especially since I'm having the worst time getting a hold of my surgeon (this always happens when I need help the most), I am desperate for a game plan and hope.

I think that it does "seem" like an obstruction, but it's not really. I'm not obstructed for 2 months. I think that behind the stoma there is a kink/mechanical issue of some kind and that's why gas/output builds up there and why I am able to push it out by pressing on the area below my stoma at a weird angle.. I don't know what others know about this, but inserting my pinky, as I come close to my knuckle I feel like there is a bend that is almost "closed off."

Trying to keep my spirits up and not be depressed. I just feel like if things don't turn around soon I will feel the despair very strongly.
Posted 3/16/2017 3:50 PM (GMT 0)
It's okay, I understand the frustration of hearing the same old suggestions that you've been given about a million times. It's hard not to get impatient sometimes.

In the meantime your BMI is really low. I don't think doctors take low weight seriously enough sometimes, but that is worryingly low. Keep on trying to get hold of your surgeon and don't hold anything back when you do see him! It's a shame you don't seem to have a stoma nurse: in my experience they are far easier to get hold of and have more experience in some ways than surgeons do, given that they see stoma patients every day.

You might well be right about a mechanical kink. It's not an obstruction in the Crohn's sense of the word, but the effects are pretty much the same as one. At any rate keep hanging in there - try to believe that this is only temporary. Sorry if that's a cliché, I'm not very good at cheering people up :-/
Posted 3/16/2017 4:32 PM (GMT 0)
Thanks NCOT. I must look at the big picture. Chances are, this is resolveable (whether or not my assessment is accurate). My surgeon and GI at CC said they both expect a great outcome from my pouch removal. Hopefully, despite the short-term disruption, in a few months life will be back on track and I will be enjoying life with a well-functioning, pain-free GI system.
Posted 3/16/2017 10:38 PM (GMT 0)
I hope you get some relief soon! You deserve to forget about your intestines for awhile and live life!
✚ New Topic ✚ Reply
12