Ileostomy Help? Need to vent!

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Matt's Girlfriend
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/13/2010 5:04 PM (GMT -6)   

They said it was UC or Chron's Disease - but they were wrong. He was being treated for Chron's disease ever since January. He finally, after the umpteenth blood transfusion, saw a doctor that got aggressive with him. They took a second colonoscopy and on June 17th was diagnosed with Colon Cancer. June 18th my boyfriend had 13 inches of his colon removed along with a cancerous tumor. They took the remainder of his colon and attached it to his lower intestine. They did this surgery laparoscopic. While his stay in the hospital he was experiencing horrible gas pains. But they said that they couldn’t keep him in the hospital for gas pains. He didn’t have gas pains – his colon broke loose and he was getting really sick. They did not do a CT scan to find out before releasing him home.

 

Once we got home, he wouldn't eat, he couldn't get up, he was in excrutiating pain all the while continuing his million Prednisone pills. He kept saying to me and his sister that he thinks he might be infected, but there were no signs. We all thought it was gas because that is what they told us at the hospital. We also didn’t know that the Pred would mask any infection because it was a steroid.  Finally he thought if he was at his mom's house he could heal. (There is nothing like mom's house I guess) But thank God we did! I took him to his mom's house on the evening of June 30th. He woke up with his belly aching and his mom got him a warm compress for his stomach. He then started to see pustules form around his incisions. So he stood up and the puss started to pour out of his incisions like he was urinating. He knew then that it was peritonitis. He went septic. He was crapping inside of his guts for over a week.

 

He was rushed to the hospital and right into surgery. No round of antibiotics will kill this. The surgeon said that he was 12 hours from dying. My baby is only 40. The surgery was 2 and half hours. It took 17 liters to flush out his system. And now he has an ileostomy bag. He was devastated. But even more so when he found out that he had an open wound that needs to heal from the inside out. The wound is about 10 inches long and now about 3 inches wide. We had no idea about this wound until his third day in ICU. He was knocking on death's door. I am so grateful I took him to his mom’s house. He would not be here if I had gone to work and left him at his house.

 

While he was in the hospital I had to be trained how to change his wound dressings and his bag. He has not been able to accept any of this. He is humiliated and won’t even look at his stomach. If he looked he would see that he has a huge cut that looks like a filet mignon sliced in half and an ileostomy bag that he craps in. He calls it the bane of his existence. I try and knock his pessimistic and negative routine off and tell him think of the alternative.

 

He clotted during the second surgery so he is on Coumadin and has to be for months. They can't do the reversal surgery until he is off the blood thinner. The surgeon keeps pushing the date farther and farther up and he is getting more and more depressed.

 

Right now I am trying to train him to change his own bag. He is having issues sitting up because of the wound and it has been so difficult. But if he can get up to dump the bag, he can get up to change it. He has been out of the hospital for almost three weeks now. He also has a home health care nurse come and check on him three times a week. It used to be daily, now just three times a week. He is healing up nicely, but not quick enough for him.

 

I need help! How do I comfort him? How is the reversal surgery? What can we expect from this point on? Have any of you gone septic and had to deal with the ileostomy bag and a huge open wound? Could you give us any hope? He keeps abscessing too! Puss everywhere! Yikes!

 

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 8/13/2010 6:09 PM (GMT -6)   
oh man. That is just horrible. i'm so sorry he is going through all of this, and that they took so long to diagnose cancer. After all that, now he is having complications. ugh

I haven't had the reversal surgery yet, but I have had both abscesses (peritonitis) and was in ICU for a few days. I had abd. drains in my abd. that was gross. Also, i got a blood clot post 2nd surgery.

I remember it hurting to have to change things after my surgeries. My husband did my changes for a few weeks. I had a hard time bending down to see things clearly. So, if you can be patient with him while he's healing, then that's one thing I would recommend. But, also be telling him everything you're doing, so he can get used to the idea. When he does finally change it for himself. He will get a feeling of independence again, and that will be a positive for him. It was a scary journey, but he can get through it.

Also, b/c of my blood clot, I was on coumadin for 8 months. I wasn't anxious to get a reversal, because i wasn't ready and I knew that wasn't around the corner. But, I wanted to be able to try to get pregnant, and i didn't want to deal with blood thinners, so I wanted to get off them b/c of that. I just kept reminding myself, that it was only for a short time. Things will get better.

I think mourning is a natural part of the healing process. Nobody wants to go through this crap. Nobody wants to feel deformed.
He'll be depressed, angry, scared. And that's ok. I think your job will be to just listen to him. Have patience with him. Support him in everything. Don't rush him into anything, but be encouraging. Remind him to be patient with himself. And just be understanding. I know this will be a strain on you too (ask my husband), but it's important to be there for him (I know you will, b/c you are asking us :-))

You can lean on us too.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 8/13/2010 6:19 PM (GMT -6)   
It does sound like your boyfriend was very lucky! As bad as things seem please understand the human body is very amazing. The healing process will seem long
some days but he will heal. Keep a close watch as I am sure you are and be patient...its hard! but its worth it. The illistomy is not the worst thing to ever happen. Some of us..like me MADE them give it to us!
Keep the faith I had my full open surgery in Feb.. Plenty of complications including a 3 week hospital stay and......today I played 18 holes of golf, in Texas, with the temps around 100. There is light at the end of the tunnel!
God Bless You
50 yr old man, Colon Cancer survivor 2005
90 % of colon removed 2005 The rest 2-23-10
Illistomy  Feb-23-10
Fishing in the Kayak somewhere the rest of my Life!
<*(((((><

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/13/2010 7:51 PM (GMT -6)   
that is horrible! i am so sorry to hear he went through all that!
I agree with Chassity that he probably will need help for a little longer changing the bag, esp if his wound is open, because of not being able to bend and twist properly.

As for helping it learn to deal with the fact that he has a bag, i'm a tough love kind of gal, so i would probably just say, deal with it, there are much worse things to have happen, you could be dead! tell him you are happy he is alive and don't care one way or the other. I would then say that he isnt' helpign himself by moping around feeling sorry for himself!
But that's me, and my approach doesn't always go over well. I dont know what type of person he is. Although, my husband told me almost exactly the same thing one of the times i was in the hospital with UC.
If you dont think he can handle that, maybe read him some of the stuff on here, where we all talk about our normal lives and how we do everything and anything! Maybe that will perk him up a little.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/13/2010 9:55 PM (GMT -6)   
Wow, you and Matt have been through a tremendous amount in the last 9 months, and being on Prednisone is probably messing with his emotions, too! Do you think he would take a low dose anti-depressant or anti-anxiety medicine, if his doctor prescribed it? I think it would help him cope better and feel more like himself again.

Most importantly, your love, patience, and support is really going to help him get through this difficult time. Just try to stay positive and keep encouraging him. Also, if you can help him do some things that he likes to do, that would help him feel normal again. That's what my husband did for me, and it meant the world to me.

For instance, I like going to the beach. So, when I was home recovering from surgery, my husband would take me to a beach where we could drive right up to it, so I didn't even have to get out of the car to see the ocean. It made me feel happy and gave me hope that one day I would feel well enough to walk the beach and swim in the ocean again, which I was able to do not long after.

Healing takes time, but it will happen, and he will feel better soon. Please know that you can come to us anytime you have questions or need support. We're here to help in anyway we can! :-)

Take care,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 8/13/2010 9:58 PM (GMT -6)   
WOW! This is rough. I agree, just remind him of the alternative and reassure him that you love him no matter how he poops, that's what it all boils down to.

Tell him I got my ileostomy bag rather than dying after I was severely damaged by 2 surgeons who were operating for a benign condition that I didn't end up even having (upon medical/legal review of my pre-op scans). They saw in 2006 surgery that I did not have a redundant sigmoid colon and proceeded to remove it anyway; then did 6 other procedures, most unconsented, then did not follow up to complications. (Yes, I am suing.) So I had to get my permanent ileostomy in 2007 rather than die, but I didn't need to be in that situation in the first place. Then due to all the unneeded 2006 surgery I had a ton of adhesions that had to be taken down in 2007 because they gave me continual small bowel obstructions. I had to look for 13 months to find a surgeon who could fix me up the best that could be done. In the 2006 surgery my rectum and colon were permanently damaged beyond repair.

Tell him that I have been cruising ever since the life saving ileostomy surgery. Now I dance on cruise ships. Have been on a world cruise, circle south america, Greenland, Iceland, Antarctica, Caribbean. In October I plan to head off for Africa. My place of employment let me go and I lot my professional career and all anticipated income, so I thought what the heck. Go see the world. Sure not the path I had planned to go down.

Wish him well for me and from all of us. THis is a great group. maybe he could post when he's up to it. Rosemary

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/14/2010 8:57 AM (GMT -6)   
Stay strong! Like it's been mentioned, he is grieving the 'loss' of what he feels is his life...that will turn around, please be patient. I think flchurchlady's suggestion of a anti-depression medication could help. Many, who have not had an experience like his, find great relief with them for short periods of time.

Let him know that he can look at things in his own time...I remember my first 'look' and I thought what the H--L! That was more than ten years ago and after I had that one reversed I actually ask for another! Maybe if you ask him to hand you things you need or prepare the wafer he could feel better about getting involved?

We are here for you! Let Matt know he is welcome, too, you'd be surprised at some of our experiences! Maybe he could ask a few questions of the things that concern him the most?

take care<3
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Matt's Girlfriend
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/16/2010 9:02 AM (GMT -6)   
Thank you Everyone!
 
There is hope out there. I know he is going to heal up fine. But not on my watch. I really appreciate the responses I received.
 
I will keep you posted.

carrotjuice
New Member


Date Joined Jul 2007
Total Posts : 14
   Posted 11/4/2010 2:19 PM (GMT -6)   
My boyfriend was diagnosed 6 years ago with UC, he had a heart attack and went septic and had open heart surgery to remove a cherry sized blood clot, later on he had a PE (blood clot in lung), and now has an illeostomy. He has had to have blood transfusions several times, and taken coumadin and lovenox. He just gets bad news after bad news. He tried every medication for UC and nothing helped long enough. He ended up abcessed and hey had to do the illeostomy surgery. He was devastated too. He has been very depressed over the years which he goes to a counsler and takes medication, but the depression is still there. After the first surgery he ended up going to the phsyc ward in the hospital because he thought he might commit suicide. Its been 8 months and went in to get his last surgery to get get reconnected witha j-pouch but was told that something is wrong with the pouch and it cant be used now. They think its crohns, blood clots got in it, or the tissue just died. So he will probably have the bag forever now. If it isn't crohns the doctor referred us to a doctor in Cleveland, OH who redoes j pouches and he might try again. I just feel horrible for him. I love him no matter what but theres nothing I can do to help him cope really. He's negative about everything. I tell him to be thankful for being alive and all but he just gets angrier. He just turned 24 in June. I'm 23. We have been together for 5 years. I don't know how to deal with it either. But Im just trying to stay by his side even when he wants to take it all out on me. It really makes you feel helpless. But also know that you aren't the only one going through this. You aren't alone.

carrotjuice
New Member


Date Joined Jul 2007
Total Posts : 14
   Posted 11/4/2010 2:22 PM (GMT -6)   
I wish one of these guys would tell us how to deal with it and handle it and approach it in a way that makes them feel loved and better. I know they dont want us to feel sorry for them, but we cant be stern and seem uncaring either. I wish they would tell us what makes them feel better. I feel like I ask him this all the time and it just aggravates him but Im not a mind reader.

Sometimes I think maybe I am trying too hard. Idk.

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 269
   Posted 11/6/2010 9:18 PM (GMT -6)   
carrotjuice- Have you suggested he come onto thie forum? I'm a new addition to the forum and have found it immensely supportive and everyone is so caring! I think you are doing everything you can for him. Being there and being supportive and listening is sometimes all you can do. And he's a guy...who knows how they think? His pride and dignity could be hurt with everything that has happened. Could be a reason why he's not really sharing about his feelings. I'm not saying this to offend you at all, but talking to someone who has experienced the same or extremely similar things can be much better than talking to someone who hasn't. Like I said, this forum is amazing! If he needs to talk to anyone who has an ileostomy plus other health problems, let me know! I'm around the same age (20 years old), so if he needs a perspective from someone around the same age, I'm here to help! :)
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