I was wrongly diagnosed with Crohns in June last year but diagnosed with a Lymphoma (DLBCL) in Feb of this year and started chemo. In late March of this year I had emergency bowel surgery following an obstruction caused by a volvulus. They untangled my intestines but gave me a loop ileostomy, hopefully reversible once well enough.
A couple of weeks after the surgery they had to re-open the bottom of the wound down my abdomen and lots of stuff came out which was just like what comes out of the ileo. From then on I had paediatric drainable bag on the wound. This continued to drain but over time the content stopped being like that of the ileo and eventually more like a clear bodily fluid which dried up and the wound closed. Recently during a bout of cellulitis it re-opened, or rather burst open, and more yucky stuff came out again.
Had several tests and they believe there is a leak somewhere under the stoma which connects to the cavity under my wound. Some call it a fistula and others just a leak due to the weaknesses left by the damage of the lymphoma. My surgeon seems happy that he can sort it all when he does the reversal. Until then he wants me to keep the wound open so that any fluid that collects can drain to avoid an infection. This is becoming increasingly difficult as the hole is closing and sometimes have to 're-open' it with a cotton bud soaked in sterile saline - the only thing I can think of to do. The content is now quite similar to that of the ileo again.
I want to know if anyone has any experience of this or anything similar.
I also wondered if anyone has any experience of ileos while undergoing chemo or of reversal after. I suffer from such extreme fatigue that often find it very difficult to get motivated to change my bags which I have been advised to do once a day or every 2 days at the most.
I know this is quite a general question/post but any feedback would be appreciated.
A couple of weeks after the surgery they had to re-open the bottom of the wound down my abdomen and lots of stuff came out which was just like what comes out of the ileo. From then on I had paediatric drainable bag on the wound. This continued to drain but over time the content stopped being like that of the ileo and eventually more like a clear bodily fluid which dried up and the wound closed. Recently during a bout of cellulitis it re-opened, or rather burst open, and more yucky stuff came out again.
Had several tests and they believe there is a leak somewhere under the stoma which connects to the cavity under my wound. Some call it a fistula and others just a leak due to the weaknesses left by the damage of the lymphoma. My surgeon seems happy that he can sort it all when he does the reversal. Until then he wants me to keep the wound open so that any fluid that collects can drain to avoid an infection. This is becoming increasingly difficult as the hole is closing and sometimes have to 're-open' it with a cotton bud soaked in sterile saline - the only thing I can think of to do. The content is now quite similar to that of the ileo again.
I want to know if anyone has any experience of this or anything similar.
I also wondered if anyone has any experience of ileos while undergoing chemo or of reversal after. I suffer from such extreme fatigue that often find it very difficult to get motivated to change my bags which I have been advised to do once a day or every 2 days at the most.
I know this is quite a general question/post but any feedback would be appreciated.
