New ileostomy and pain - need help

[Smithamd]

My husband has his colon removed and got a permanent ileosotomy last Friday. He had a small bowel perforation which led and large bowel blockage which led to this surgery. He was on NG tube till day before. He slowly started eating and drank some broth yesterday afternoon. Ever since he has very bad pain in the stoma site , he says it is on the stoma site and radiating up and down. Has anyone had any such issues after the surgery? He has pretty high pain tolerance, he barely took pain medications till yesterday, but yesterday he had to take pain medication every 3 hours and was still in pain. His blood pressure also high now. Please help.

[Mysticobra]

Hi.
My experience is a little different but same time frame.
Bowel removed. Pouch created and temporary ileo.
A week later I had intense pain at the site.
It turned out to be a twisted bowel.
I went in for immediate surgery. Not immediately. Took em 14 hours and couldn't find it digging in my stoma that long. But after exploratory surgery I was told it had twisted. Which shuts it off so nothing moves through. Most intense pain I had in my life.
I'm not saying he has this but it put that in my head.
Is he still in the hospital? Or home?

Richard.

[Smithamd]

Thank you for the reply. He is getting plenty of things in his bag. Just the pain after he eats.
We are still in hospital. He had lots of inflammation before the surgery itself due to him being sick for very long time.

[Diane C]

Smithamd,

I switched from a colostomy to an ileostomy on Nov 1. I was prescribed Tramadol for pain but rarely took it, preferring to rely on Xtra-Strength Tylenol as I feared my system would slow down and I might have a blockage. At one point, in the hospital, I needed the nasogastric tube as things were not moving and too many toxic substances were in my stomach just sitting. Was in the hospital for 10 days but my surgery was extensive. Then 10 days in rehab where my abdomen felt huge, the pressure caused intense pain, and I was VERY distended. Surgery showed much inflammation -- no surprise -- as my intestine had gotten strangulated once below my stoma and I had a large hernia and other problems over several years.

Like many, I experienced severe bloating for a long period which caused pain. GAS! Kept walking the halls but it barely helped. I don't think you are referring to distention? That will pass but is not fun -- and still have much bloating months later. This is my condition, I believe.

During an ileostomy, so much tissue and nerves nerves are cut. They must regenerate and seek out new locations to grow and this causes pain, sharp tingling, and other symptoms. The formation of a working stoma takes time. Karen/Button has explained this healing process well in other posts. Is that the kind of pain experienced?

At the rehab (skilled? nursing care center), I had one night of extreme pain. My stoma was working but I felt clogged. A nurse kept coming to me throughout the night with warm prune juice and a heating pad. I kept trying to breathe deeply -- not easy. Those procedures eventually helped, I slept, and when I awoke, the sharp pain had subsided.

Am unsure what to suggest except to confer with the surgeon or GI specialist. I had several Xrays while in the hospital to solve some issues and allow healing to continue. Many here have had tougher ostomy surgeries than I although I had much removed and it was no walk in the park. But if the pain and high bp continue, DO seek out medical help immediately.

Wishing you good luck!
Diane C.
2000 MACE Prodcedure – Pelvic Floor Syndrome, Non-Relaxing Puberactalis – Constipation/Distension
2002 Colostomy
2018 Ileostomy; removal of MACE, colostomy, rectum, anus

[Mysticobra]

My twist was a complete blockage so the pain was intense. Could be a partial twist.
I don't know. Most of what I went through is lost in my memory and a fog. I had a hard time and many complications. I couldn't keep track. Some can keep track. I couldn't.
Except the last surgery because it went so well and ended what seemed like a month if Sunday's of frustration and pain.
It just sounds like something is clogged. Bei g in the hospital it seems they would have it figured out by now. I know when mine was going on it got to the point they knew it was gonna kill me or do some serious damage so the opened me. Again. I would wish this on no one. I hope they get it figured out. So his life can move on.
Sorry I'm not much help.
Richard.

[Diane C]

Since you're still in the hospital, I'd think an Xray or CT-scan would reveal the problem. I sure hope so -- and that it can be resolved ASAP! I don't know much about perforations and blockages -- luckily -- although my intestine was strangulated below my stoma. NOT fun.

Wishing your husband freedom from pain. Don't be afraid to speak up loudly and clearly. You're there so he can feel better. Help to ensure he does! We're supporting you. Keep us posted.

Diane C.

[Smithamd]

The doctors say that pain is normal and will get better. But this pain starts soon after he eats. The pain is now keeping him from eating much. I do see lot of gas build up in the bag also.

i was not able to find the posts from Karen/Button about the healing process. Can you please direct me to that?
All this is very new to us and not sure what to expect at each stage.

Thank you for all the responses.

[Button]

Smith land:
Individuals with long-standing UC or Chron’s often go into surgery in a weakened and decompensated physical and emotional state of being. While removal of the affected/inflamed colon does bring about relief of the underlying disease condition, recovery is not an immediate light bulb event.

Your husband’s recovery will be a gradual process that will span several months. Look at measuring progress week to week, not day to day.

Your husband will have continued diffuse inflammation within his abdomen. This is often referred to as “inflammatory stranding” as seen on imaging scans.

It is not uncommon to have a a low appetite after surgery. Even a few bites of soft food can feel overwhelming. The stoma and 6-8 “ segment of intestine behind the stoma can be particularly vulnerable to swelling/effusion and discomfort as digested food material passes through. The stoma is secured to the surface of
The abdomen with sutures. The sutures do not allow the stoma to expand as food material passes through, which can make for increased pain.

Slow and steady will be your husband’s mantra in recovery. Slowing increase walking. Slowing increase intake of oral fluids and soft foods. Slowly.

I was not able to eat more than 1/4 piece of white toast and 2
Bites of scrambled egg at a time for several weeks. Any
food with even a hint of fiber had my intestines in agony.

Your husband has had long-standing UC with long-standing inflammation. It will take months for his body to find a balanced place of internal calm.

Keep eating easy and relaxed, soft foods and strained soups, with minute portion size offered frequently.

When he gets home, plan some short outings to get out of the house and outside for fresh air and scenery. Plan some things to look forward to on the calendar.

The mind-body connection to the experience of pain has validity. Taking care to aide your husband in emotional healing and emotional resiliency will also help with his physical recovery and mediating his pain.
Karen

[Smithamd]

Thank you all for the response.

They put him on stronger pain medications. And that seems to help. But whenever he waits to see if he will get pain and pain starts even for a bit, his BP goes high , very high heart rate and slight fever kicks in. He is on 1000 mg tylenol every 8 hours also. That does not seem to help much with pain.

He is hungry , but dilemma is what to eat that will not cause more issues. His protein levels pre-surgery was very low. So trying some boost supplements for now.

[Diane C]

Smithamd,

Sure hope the doctors are listening and advising tests if necessary. I know you are paying attention and supporting your husband. Always great to have an advocate in the hospital although I hope you're getting some rest.

When I had my ileo surgery and more, I was given Tramadol. It's an opiate but not as potent as many and I was warned it could slow down my system and cause a blockage -- the last thing I wanted after a hernia and constipation. So I took only 2 tablets once the heavy-duty painkillers were off the schedule. At the skilled (?) nursing center after surgery -- and later at home, I relied on 2 Extra-Strength Tylenol every 6 hours which rarely helped me before but DID for the surgery. It doesn't sound as if this would be enough for your husband and I'm reading Karen's words.

I dealt with a LOT of gas and still do. It's my GI system but I think it goes with the territory of surgery. I thought by now this would no longer be an issue with surgery back on Nov 1 but it is. Because I'm also dealing with a post-surgical wound (not at the ileostomy site), I'm taking a collagen mix called Juven (very costly at Amazon) which has little protein and also found what I THOUGHT was a great protein powder without dairy, gluten, sugar, soy, etc. The jury is out as I think it's contributing to my distention. But 2 scoops in a glass of almond milk -- of if your husband drinks dairy -- have 20 grams of protein which is quite a bit -- in a healthy way. You may want to look into it but I imagine the doctors will advise him to use Boost or Ensure. I purchased Bio-Trust Harvest Chocolate (and Vanilla Caramel) Protein powder -- and it's really good -- but am concerned re the gas which neither your husband nor I wants. It's not to replace a meal but when gas gets to me, though I'm trying to ingest quite a bit -- even if VERY slowly -- and hydrating often, it's easy to get down. https://www.amazon.com/BioTrust-Harvest ... rnull&th=1

Wishing you both better days in the near future.

Diane C.

[Smithamd]

So his fever went up again today with lots of pain.
Another CT done revealed an abscess. They are planning to drain it tomorrow. Anyone has any idea about this?

[agichk]

Smithamd: how is your husband?
pain better after the abscess drained? did they put in a drain to prevent build up? Antibiotics?
Sure glad not an obstruction.
I was on TPN for 3 months and not able to eat. That stopped very quickly after line infected. I have been eating for 3 weeks now but no fiber I was told for 8 weeks. I am doing boost high protein. the hospital tried to get me to do ensure but the taste was horrible. Thankfully they had boost (not high protein) but better than ensure. I have done boost for the last 18 months after 1st bowel surgery as only way to get calories at times and protein.
My surgeon had a long surgery as the bowel was severely twisted and had to be tacked down while doing ileostomy. I try to eat whatever I can that sounds good at the time. My appetite is not there for months now. I had my surgery on 3/4 with 2 weeks IP for infection and collapse of both lungs with fluid in both lower lobes. I was told months for recovery as anemic, the inability to eat for so long & TPN for 3 months. They were trying to get TPN to optimal for surgery that was planned for 3/29 but changed as admitted constantly.
I try to get out daily though I can say several days just not feeling like even walking the driveway. I joined the local ostomy group and found the meetings (2 so far) to be so helpful. Our local chapter as "visitor" program where someone who is volunteer with the same type of ostomy visited me pre surgery in the hospital and post surgery in the hospital but also can email her anytime for help or call her. You guys might see if they have available for you even if not a member. I have found very helpful
Kathleen