Fistulas

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

Hello NavyMan.

Thank you so much for sharing your story. 

It is hard to imagine what you have been through and how you must have felt during this time. All I can say is that I appreciate the fact of you are sharing with us, because, if nothing else, it helps us to realise that our own problems are relatively small compared to those endured by people such as you. 

I sounds as if your body has probably done its own healing and there is little to indicate that the infection would be diverted eleswhere. Let's hope this is so and that you can now move on and enjoy a future life, free of all that hassle.

Best wishes

Bill    

Hi NavyMan,

I will be praying that this is a miracle for you and you will be healed! Best wishes for you!!!

Sometimes this does happen.. they heal after years of draining. Accept and be grateful our bodies are amazing! 

Hello NavyMan...I do hope this is your miracle for you sure have been through so much.  

Thank you so much for your kind remarks, Bill.  I have suffered tremendously.  Never told that healing was a possibility.  I also have molecular dementia from all the drugs I took after being over radiated for stage 4 prostate cancer.  Ha--that was 19 yrs ago so at least that never returned as of yet.  Lucky to have a bladder as well. The sale of my home is carrying my nursing home expenses and I'm unable to care for my mother who is now 97 yrs old and had to go into a home as well.  The blessing in all this is we have a family member (cousin) who has been by our side for the last 3 yrs and 4 months, through thick and thin.  That's why I'm alive today.  I had covid and lived through it---my mother just had it and is having a rough time coming back.  It is wonderful to find a group of compassionate people to learn so much from each other.  Things you never learn from professionals.  God bless you for your empathy and helpful information.  My best, Navy Man

Thank you so much!  It seems unreal after so many failed try's to just live.  My health is better since the draining ceased.  I believe somehow this poison gets to the brain even if minutely, and makes one feel horrible and more confused.  The body is a remarkable machine!  Thanks again and hope you are doing Ok.  Navy Man 😄

Thanks yku for your prayers--that means so much to me.  Hope you are well and doing ok at this time!

best,

Navy Man

Thanks yku for your prayers--that means so much to me.  Hope you are well and doing ok at this time!

best,

Navy Man

Thanki you so much.  I never knew it was possible.  I am rejoicing for this gift.  Wonderful site to hear from others with experience!!

My best,

Navy Man

Hi Navy Man, you sure have been through a lot. I pray you will get through this and please keep us informed.

Hi Navy,

 Welcome to the show!  Well hey........YOU sure got a lot going on! I'm not sure I'm following everything your saying, but your infection certainly could have healed up.  I guess what I'm struggling with is.........if you had a perforated colon.......and fistulas in said colon........why didn't they just remove your colon when they gave you the loop ileo......and be done with all the issues involving your colon?  

  Regardless........sure, your infection could have healed up......happens a lot.  Are you on Humira (Adalimumab)?  It's known for closing fistulas.  I was going to say have them check your white blood count to see if the infection has calmed down, but with everything you got going on your WBC might not change much if the infection went away.  If it got diverted somewhere else you'll know it..........the body has a habit of not liking infections anywhere in it.  Is the infection from a fistula draining..........or something else.  Sorry, I didn't understand everything you were saying.  

thanks,

bob

Thank you earth angel.  I'm so happy just to think this is possible.  Drs. Just sent me out to die. Unbelievable the road I s travelled--but I'm grateful to find this group!  😜. Take care and be well-Navy Man

Thanks for your reply Bob!  You offer me some good advice and I'll follow up.  Never was offered that Med for my condition.  To fill in the gaps, when my colon ruptured, I was already somewhat septic.  They operated and did the   Loop 2 days after going to ER.  At the time they put me on the best drugs available to see if I could heal.  I had abscesses on both sides pressing on my thighs and they did surgery to drain them.  Took about 2 months when they decided on a debridement, which I had to wait to go to another hospital that could perform this.  I was very sick the whole time. They put drain tubes in and tried to clear the infection.  I was a mess--once I had the debriedment, I had 5 tubes coming out of me--and placed on high powered drugs. They made me sick and I could not eat.  Went to rehab only to go back and forth to reinsert tubes that fell out.  Pus ran continuously.  Then They put me on IV tube feedings which did not help. They finally said the colon and rectum needed to be removed but because of my inability to eat and dementia i was not a candidate for the surgery.  From prior radiation my intestine was not healthy and healing was not expected.  Therefore I was sent out on palitive care with hospice.  Tubes kept coming out and I kept going back to ER and hospital to correct.  Fistulas were apparent and communicating through the abscess from rectum and both sides of peritoneum.  I also had osteomyelitis as well. The debridement helped somewhat with this.  As time went on I developed two pathways but drain was placed to both of them.  I suppose these pathways healed as a pierced ear would and no infection could enter the blood stream. I spent two yrs in rehab unit and was well liked and cared for with the help of my cousin, my advocate and POA. She is the reason I'm alive.  When I was sent out after the dr said he couldn't operate on me for a successful outcome I was on one last try of meds.  They did not work and when I stopped them I began to have an appetite and started eating.  That began my journey back--I got healthy and went through covid, survived and was then on antipsychotic  drugs that were not right choice.  Cousin demanded removal and I went back to my old self.  I now have trouble with short time memory and have learned to get stronger through falling all the time.  I can now do some caretaking for myself, get in and out of wheelchair.  I haven't walked since I started with testicular pain when this all began and Drs couldn't get to source of it. I also have periferial artery disease in hands and feet that limit me. 

I'm so grateful that this could be true that I'm healed on the inside but will take your advice. I'm in a memory care facility where people are so worse than me-but a few that can talk and carry a conversation. I have never accepted my ostomy psychologically, but try.  My hands shake so I can't change it so therefore I have to have care by Home Health agency and they are great.  On call 24/7.  My medi al needs keep me here as well as molecular dementia. 

Thanks again for the information--I've learned a lot from all the good people on this site as well as you!  Take care and God bless!!  Navy Man

Hi Navy,

  Here's the blurb from the web regarding Biologics and fistulas........."Biologics known as TNF inhibitors may be prescribed by your doctor if you have a fistula because they're so effective. The FDA has approved biologics specifically to treat fistulizing Crohn's disease and to maintain fistula closure."  Humira is just one of the Biologics, so your doc should be able to determine which of them would suit you best.  Humira is self injected via a pen, some of the others are IV infused once a month or so........so there are options.  Keep us abreast of your progress.......and post when you get bored!!

regards,

bob

Tahnks again Bob, for all your help.  I will feel well informed to have this powerful knowledge!   I will keep you in the loop.  Enjoy this ite so much!

Naby Man