I'm new here and hope you will read my story

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Gerih123
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/21/2009 12:41 AM (GMT -7)   
Hi,

What a fantastic forum. I've been floating around on the internet for weeks now and sadly only found this site a couple of days ago.

I went in for a hysterectomy in February and walked out in April with an Ileostomy. I can't compare my experience really with you guys as you've been thru so much more with CU and IBS etc with years of suffering. I just suffered for years with Endometriosis and had to have the hysterectomy to finally get rid of the disease.

I got a bowel obstruction twice after my initial surgery. First they tried conventional therapy with a ng tube and the second time surgery. It did not work. I was in theatre for over 7 hours. My surgeon had to cut my bowels loose from adhesions cm by cm. I was in ICU for almost 2 weeks. Then got another obstruction. My surgeon removed the end piece of my colon where my appendix use to be and removed the bottom part of my small bowel. She said I was too sick by then for her to attempt to reconnect the two pieces and therefore did a Ileostomy to give my colon a chance to heal.

I was devastated. To be honest it was the most horrible 6 weeks of my life... I had the Ileo surgery on the 25th of March. I went home just before Easter in April. My skin had horrible burns from the acid in my stomach as we've not yet found the right bag by then. I do not have a normal stoma. In fact, it is very scary. My wound goes just underneath the stoma, and the wound is indented, so no bag could stick to that gap. I had leak after leak after leak. I literally cried the whole day, every day. It got so bad that the stoma nurse would come to my house, put on a new bag and I would not move for hours just so that we could get the bag to work for a while. The moment I got up it would leak. This lasted for almost two weeks. My then Stoma nurse phoned the surgeon and told her she gives up on me. She was not sure what to do anymore. And we are talking about a person in the business for 35 years. She was so sweet. She told me to go back to my surgeon for help. I went in to see my surgeon as we were worried that the wound was infected by constantly being leaked on and just for some emotional support. I must say that she is the kindest person in the world. She booked me into hospital straight away for pneumonia!! Spending all that time on my back after three major surgeries is not good for your lungs! But that saved my life. They put me on suction for the week to help heal my skin, I got to meet my wonderful second stoma nurse and after trying a couple of bags started hollister 8528 with strips and round sticky things and powders and skin spray etc. It worked, my skin started healing and the suction helped the bag stay on as the liquid did not have a chance to get under my wafer. I was saved.

I was still emotionally a wreck. I went home the Tuesday, and went to work the next week. I leaked half way thru each day. I would have to go home, and wait for somebody to come and help me after work as I can't put my own bag on straight due to not being able to see the stoma properly. I would lie there alone and just cry. Wanting to die. But, as time went on it became better. My wound is still infected, it still leaks and cause my bag to lift, but you figure ways out to overcome it. I can now go for between 2-3 days before having to change. I feel better emotionally as well, I suppose because it takes time to deal with it.

My reversal is the 3rd of June. That carries me as well. I can't wait to have it done. I applaud everyone on this site that is so positive. You've been dealing with much worse diseases and symptoms and I almost jumped off a bridge. You've made me feel better about living with my bag for the next couple of weeks. I really wish I found this site 8 weeks ago.

I apologise for the long letter, and will understand if nobody wants to read it. It just feels so much better having rid myself of some of the trauma by putting it down on virtual paper. Ha ha ha. I will continue reading the posts and thinking of everyone that is so positive on this site.

Much love and hope to all

Geri

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/21/2009 1:30 AM (GMT -7)   
Geri,
I am so sorry that you have had to endure so much in such a short period. Yea, I certainly would have been frustrated as well and would have shed a few tears. That is normal. Losing control of your body, not being able to successfully manage the ostomy, well that just sucks. But you have found the right place to vent and to seek some suggestions. Your reversal date is just around the corner and if waiting to be reconnected is what it takes to be totally healthy again, then hang in there. It will pay dividends in the long run.

Do you have any questions for us?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Gerih123
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/21/2009 2:02 AM (GMT -7)   
Hi Peggy, thank you so much. As I mentioned, my wound runs almost next to my stoma. The surgeon made the incision from just below my rib sideways towards my navel and pelvic bone. Because it got into contact a lot with the fluid from my bag it got aggravated and started leaking fluid. I can't seem to get it under control. I've not had a bag leak in over a week now, but my wound is still leaking??? Nothing I've put on seems to dry it out. Whenever I take my bag off, if you look at the bottom of the incision, you will see a lump with liquid in. Almost like a blister filled with liquid. Just not thin skin. It has veins and stuff and will bleed and hurt whenever this blister starts leaking. I don't know if somebody else had this problem and can give some advise?

Also, around the edge of my stoma I've noticed a white build up of skin. I can't get that off either and is wondering if this is normal? This is where I've burnt most by the acid and was wondering if this is a reaction by my body to protect the old wound? I don't want to go into surgery and have people think I'm dirty LOL, I just don't know what it is???

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 5/21/2009 7:14 AM (GMT -7)   
Oh Geri!  What an experience you have had!  I could not imagine going in for one situation, not even considering the outcome being anything to do with your colon, and there you go!  The majority of us do have the preconceived notion that our end result will be with surgery, so the idea of having an ileo is always there, but that doesn't mean it's ever easy going through with getting one!
 
My neighbor (no joke...she's literally right next door to me) had an ileo after emergency surgery because she was sick and no one knew why.  She does have diverticulitis, but her doctor's really felt her issues have been caused by something else.  Anyway, she too had a very difficult time with her bags and leakage.  Though she's had the reconnect surgery she's still traumatized and I've suggested she join this site just for healing purposes.
 
I am so happy you've found this forum, as it has been a savior for me. 
 
smurf  
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/21/2009 11:28 AM (GMT -7)   
what an ordeal you went through! no wonder you were not dealing well!
I went into my surgery happy to be coming out with an ileo, so i cant imagine what it might have been like to end up with one randomly like that.

I dont have any suggestions about your sore, it sounds like you are already using the pastes and powders and all.

If you are using the paste though that might be the build up aroudn the edge of your stoma. I get that if i change my bag before i really need to.

Good luck!

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/21/2009 6:36 PM (GMT -7)   
Geri, Hang in there. You sound like a strong person who has managed so far. Don't give up the race when the finish line is in sight.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/21/2009 9:20 PM (GMT -7)   
Geri,
I would have someone take a look at the sore and maybe give you some advice. Have you used the stomahesive powder or skin barrier?

The white buildup around the base of the stoma sounds like adhesive, semi-dissolved. The easiest way to get it off is to use an adhesive remover wipe (like an alcohol prep pad) but it does not sting at all. Very easy to use. The adhesive will wipe right off after a few seconds,

Let us know what you find out or if the above works for you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/22/2009 3:35 AM (GMT -7)   
gerih123--wow, Geri, you've had to deal with a lot...Hang in there, like it's already been mentioned, your reversal is around the corner:)

Formula1female
New Member


Date Joined May 2009
Total Posts : 8
   Posted 5/24/2009 9:24 AM (GMT -7)   
Hi Geri
I can fully sympathise with your story. I had a similar experience in Dec when I had my ileo, 1 SCN was useless, but at my Mums where I was recovering, I found an angel who introduced me to Orahesive powders and paste and convex bags. Since my skin healed, I have investigated so many manufacturers bags and finally settled on Pelican Convex, with powder for when the skin breaks out, and use Cavilon spray barrier. But for me the most useful thin is a product by Eakin called Cohesive Slims. These are rings that are mouldable. I warm them and then place them directly onto the back of my bag. The bags may come adrift (without the seal would have resulted in leaks) but the seal always stays stuck. In fact last night, the only thing keeping my bag on was the seal and the belt that I wear with the convex bag. The seals are a god send, especially as I now have a huge hernia above my stoma. I am in the UK

Good luck to you. Ali
As a child, knee probs (patella tendon transfers and knee cap removal)
Endometriosis from age 18 and bowel problems diagnosed as IBS!
8 Laparotomies and numerous Laparoscopies
IVF x 2 (unsuccessful)
Hysterectomy and both ovaries removed in 90 (27yrs old)
Gastro Intestinal Neuromyopathy diagnosed in 91 (known as pseudo obstruction syndrome/slow transit)
Sigmoid and Left Hemi Colectomy in 95. Resulted in 5 yrs of relief!!!!!!!!
Probs started again in 2000, getting worse and worse
Diagnosed with Lupus in Nov 2006 (which they say could be to blame for all this misery!)
Loop ileo in Dec 08 (not sure how it can be slow transit as everything passes through in less than 1 hr!  Still have full feling in upper gut though!)
Now considering IRA!!!!!  Need advise please!  Thx :-)
 
 


Gerih123
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/26/2009 12:24 AM (GMT -7)   
Hi guys,

Thanks for all your replies. I'm 8 days out from my reversal and I'm really nervous. I really hope things will go well. I've read so many stories about reversal on this site, but I know I can't compare. I sleep terribly unwell at night, having horrible nightmares. Not even my Azor can calm my nerves anymore.

Will this operation be a success? Why do people get blockages in the first place? And me having had two previous blockages before the ileo, what's stopping my insides from getting blockages again? I'm a bundle of nerves. Pls lie to me if you have to, I just really want to know it's going to be ok. I have so many people around me, but nobody understand. You have to have had or have a stoma to know what it feels like. I'm really glad I found you guys.



Lots of love smhair
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