Diverticulitis and fistula, need advi...

Diverticulitis and fistula, need advice from anyone who had both.

Posted in the Diverticulitis Forum

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Stephen UK

Totnes, UK

#1 May 4, 2010
i have both and been living ok with it for about 2 years, but over the last 5 weeks i have a recurring water infection, been on a multitude of antibiotics, but dont seem to be clearing up.

im after some tried and tested advice on living with the problems until i get to see my Specialist later this month, been advised probiotics, from some members on here (thanks), so will go with that for now, but anything else i can do to get my life back, as all i seem to be doing it loo, tv, sleep, loo, tv sleep, tried going out for a walk but felt very insecure and with the infections get warn out very quickly.

im sure i can feel the air passing via the fistula, which is pain like no other, and i also feel very tender around the bladder area if the slightest pressure is applied.

will g

Chillicothe, OH

#2 May 4, 2010
i had a fistula and diverticulitis, and i know probably not the advice u are looking for but you need surgery if you have had it 2 yrs. i was urinating feces and food ,and had the air before that ,i was very nervous about the surgery but with the fistula it is a must,it is the best way to get back to normal, also for now try the low residue diet and drink lots of water. any more questions feel free to ask me.
Stephen UK

London, UK

#3 May 5, 2010
Will, thanks, so after surgery, how has it effected your life?

what i mean by that do you find any restrictions by having the operation?
will g

Chillicothe, OH

#4 May 5, 2010
im 3 months post op and for the most part i feel great, better in fact than i have for years, all of the problems related to the diver & fistula went away immediatly ,had to really take it easy the 1st month after but have been doing more & more,i would say i had many more restrictions prior to the surgery living with diver,i eat whatever i want but have been trying to eat more healthy,i cant say enough how positive it has been just going ahead and having the surgery is,im 35 so they said i have healed up really fast, so i guess different for everybody,but i was soo worried about it all before but really not as bad as you may think to just have the surgery hope this helps feel free if i havnt covered something here to ask me
Stephen UK

London, UK

#5 May 6, 2010
Will your a star, thanks, thats helped more than you will ever know..!!, im only 33 myself and was diagnosed at 30, and i was told by my specialist i was the younger person he had ever treated. i have been worried about how it will effect me after the OP but if there is nothing to worry about, im happy with that..
Will Sherratt-UK

Reading, UK

#6 Oct 17, 2010
Hi Stephen,
I don't know what happened with you since these, but I am 35, and am in my third week of recovery after having keyhole surgery to remove fistula caused by diverticulitis.
I had not been diagnosed before and spent alot of 2010 getting sicker and sicker, in hospital once for trapped wind, a second time for blood in my urine (after which two CT scans showed diverticulitis, and how the fistula between bladder and intestine had formed). Like you, all surgeons couldnt believe it because of my age, and each one who examined me was asking "are you SURE this is you", I seemed well. All the time since late July I passed air every time I urinated, and got urinary infections time after time after time, with different degrees of severity.
I was speaking with consultants and having examinations and on my birthday (17th sept) had another severe urinary infection. As a note doctors told me urinary infections cause confusion etc. and that has certainly been the case with me each time.
I ended up in hospital and the attending surgeon was the bowel/keyhole specialist. The operation itself I was very nervous about - having never had surgery, or even really been ill with anything in my life - a totally new experience.
Anyways when I woke up that night, they had me on a morphine drip - it is one where you press a lever and it releases it through an IV into your blood. I had that for two days. I also had a catheter (in the penis which drained the bladder)- the doctor couldnt stitch the bladder, so this drains it enabling it to heal. I had that for 3 weeks. I was up and walking the next day, and was eating food within a few days. They let me home after one week - I had nurses visit me to remove stitches, clean wounds and remove catheter.
Its still week 3 of recovery, you have to be patient. For many times I feel Im totally recovered and want to get out, back to training, back to work, back to being full on active, but I can easily get tired - and it wont be gradual, I will suddenly just need to go to sleep. Food wise, I have been ok, bowels and urination are fine -there is really just a mental exercise - I got so used to passing air with every urination that I brace myself for it. And I still worry about relapsing - like with anti biotics they would kill me for the 2 weeks, and then Id feel great for a few days, then get infected.
Scar wise, there is a small swelling type scar around my belly button and then a small one to the right of my abdomen. There was one on the left but you can;t see it at all.
The thing here, everyone was really great and helpful to me during my experience. They told me all the answers and had time for me. The stoma nurse has to mark out on your stomach where they would put colostomy bags if needed. But dont be worried about this one - its a very small chance. I know I was thinking, "but what are the chances of me getting this at my age, Im just unlucky", but in the end you have to trust the people.
I did wake from the operation apparently gripping the nurses very tightly and repeatedly asking "did I need colostomy bags" and asking every few minutes.
I honestly think you will make full recovery, I do seem to be on the way to that. I have another meeting with the surgeon in mid November - Im just not sure if I still have diverticulitis or if the operation has cured it. Either way, the fistula was incredibly severe for me, and Im glad its been removed. Its strange you mention the pain of the air, as it never hurt me at all, passing air, it was honestly like my penis "farting", even made those noises, but no pain at all.
Anyway, best of luck with the condition, please let me know how you get on.
Will Sherratt-UK

Reading, UK

#7 Oct 17, 2010
I did post a (really long) reply, and arent sure if it worked or not.

One thing I didnt mention was that it occured to me that at age 35 Im probably in far better condition than I will be at age 55.

The meetings with surgeon and continual passing of air when urinating and urinary infections meant that the problem was never going to go away. Even if my problem had not been as severe its worth realising that at this time the only thing they know is surgery for a fistula. While that may change in 20 years, it still occured to me that whatever treatment I need my body will be older and less fit and less able to heal itself, plus how many other complications can it cause in the time its given?

Again I arent trying to talk anyone into surgery, and I certainly am no medical advisor, just sharing my opinion on the subject. To me, the sooner the better.


Clemmons, NC

#8 Apr 10, 2012
just spent 9 days in hospital with infected diverticulitis, had another scan while there and they found an abscess and a fistula, meds around the clock and no food , am home now but surgery is set for the middle of May,i am really afraid but trying to be brave....anyone have all these things going on at the same time? please let me know how it went in surgery? thanks

Stoke-on-trent, UK

#9 Apr 10, 2012
Donna, I had a fistula from colon to bladder, but it didn't make the surgery any more complicated or longer/risky etc... than a 'normal' resection.

They take the fistula away together with the damaged part of the colon that it is attached to. Your bladder is repaired at the same time, if it needs it.

Don't worry about the surgery - you'll be fine.

Hopefully the abscess should have healed by the time of the surgery -which is probably why they are waiting until May -to give things a bit of time to heal and settle down so your chances of having a colostomy are reduced.

United States

#10 Apr 10, 2012
Hi Donna,
I guess I feel the need to say I'm so glad they found the abscess and Fistula while you were still in the hospital. We have a lot of people that frequent this forum that are going through, or have gone through what you are and have already had surgery. I just have Diverticulitis and haven't had an attack for awhile. I am sorry for what you are going through. My only thought is please be very careful what you eat. Go by the Mayo Clinic Diverticulitis diet if you are going to be eating any solid food. If you want I will post it. Please do not eat any raw food. It will irritate an already irritated colon.

Kansas City, MO

#11 Apr 10, 2012
donna wrote:
just spent 9 days in hospital with infected diverticulitis, had another scan while there and they found an abscess and a fistula, meds around the clock and no food , am home now but surgery is set for the middle of May,i am really afraid but trying to be brave....anyone have all these things going on at the same time? please let me know how it went in surgery? thanks
Hi Donna--

Your story is almost identical to mine so we are on the same path. I got out of the hospital after a 10 day stay last Wednesday.(This is my 4th attack and 3rd hospital stay in the last 12 months.) This time they found and abcess with a fistula to the colon. I was supposed to have my sugery in mid April, but now it is toward the end of May/early June. I have so many antibiotics in my system that I think I have more antibiotics than blood and more anti-nausea meds in my system than anyone should need in a lifetime. I also have a drain in the abcess and appointments with radiology as a result, etc.

But I can tell you this--now that they found the abcess and are treating it along with the standard DD things, I am starting to feel better than I have all year. I still have the stamina of a newborn, but it's starting to get better. I am on different antibiotics now (not Cipro and Flagyl anymore) which helps.

Yes, I am nervous about the surgery but as I hear the stories of those who have been through it long ago, a year ago, and as they go through it I am encouraged that I will feel so much better afterwards and not have all of the problems. Yes, I am scared, but I am also excited to get back to just being me and my colon not running my life.

Hang in there. It sounds like we are on the same schedule. We'll be doing this together.

Lubbock, TX

#12 Apr 10, 2012
Mom do you mind sharing what antibiotic you are using?

Kansas City, MO

#13 Apr 11, 2012
Mary wrote:
Mom do you mind sharing what antibiotic you are using?
They put me on augmentin and bactrum. It is still big doses but it isn't making me sick the way the flagyl and cipro did. The cipro and flagyl make me violently sick so I am glad to have an alternative. They chose the augmentin and bactrum because when the cultured the abscess they found it was sensitive to them and a few others.

I have noticed that several people on the forum have had augmentin instead of the cipro/flagyl cocktail.

Greensboro, NC

#14 Apr 11, 2012
Thank you every one who shared info on this problem, I feel
a bit better now, will see my md in about 10 days, waiting for date for surgery, could be in hospital after surgery for about a week, i sure hope i dont get the green room again, lol, after 9 days looking at green walls i will never paint anything green!Donna

Panama City, FL

#15 Apr 16, 2012
I had diverticulits that developed into a fistula and thus poop coming out in my urine. I was very ill and on antibiotics for about 3 months pre surgery. My advice is to not procrastinate. It has been about 10 weeks since surgery and I have recovered well except for nagging urinary issues - I developed a bladder and urinary infection from the feces in my bladder and I was cypro resistent so it got worse and worse before getting on the right antibiotic. I still have these urinary symptoms even though my tests show now infection - the urologist says it will take time.

My surgery was laproscopic and I was out of the hospital in 3 days. Great doctor(s)- and if anyone reading this is in Northern Indiana and not sure of who to consider for a surgeon, email me and I will call you and tell you about my guy - fantastic.



Springview, NE

#16 Jul 8, 2012
Hi all, thank you very much for your stories as I'm dealing with similar stuff.. divert that formed an abcess on my bladder.. fistula ? is still out there even though I have had 6 sets of CT scans in the past month. Not sure why I have no complete picture. Abcess formed on the bladder and now in week 2 of the second drain tube.. Doc's say if this time does not work surgery will be needed. Have taken many rounds of antibiotics and now on Cipro/ Flagyl for two weeks. Get checked by radiologist Wed to see if drain tube can be removed ( interventional radiologist ) and next will be colonoscopy etc.. Sure hope to get this fixed and behind me... thanks again everyone for sharing your story.. Has anyone had similar experience as mine ? Drain abcess twice and returned etc.. Glad you are all healing and feeling better. PS I'm 53 female.

London, UK

#17 Jul 10, 2012
I had a fistula but it was diagnosed by a simple urine test -fecal particles in my urine.

Greensboro, NC

#18 Jul 15, 2012
had my surgery may 9th had part of colon removed, fistula repaired,when he went in he found scar tissue from other surgery 35 years ago and had to scape it away as it had attached to the bowel, Then he could do the surgery , did end up with being cut in 3 places instead of the tiny holes we were hoping for, BUT except not being able to snap my jeans because it is still tender there by the belly button, which does not look like one any more, i am doing great, and thank God every day that i didnt wake up with any extra baggage!!!!!best advise i can give is do not wait...my dr just kept telling me if it happened again i could end up with a bag....so i went for it now....

Harrow, UK

#19 Jul 16, 2012
Congratulations, Donna, hope you have a swift and uneventful recovery.

Spokane, WA

#20 Dec 17, 2012
I had my first diverticulitis event in the spring of 2011. Diagnosed with a CT scan. They gave me antibiotics and pain meds. I felt better in just a few days. Within a month, I was feeling sick again. So I went back to the docs, and they gave me more of the same. Spent the entire summer that way. The antibiotics would get me feeling better for 10 days, then within about 15 days I was back in the docs office with ABD pain, and painful urination. Then in early November...it happened... I had penile flatulence. This scares a guy! I went to the docs again complaining of the same ABD pain, painful urination, bloody stool (this was new) and the gas passing. I was in surgery within the week. I got the bladder fistula removed, and about 12" of my colon. I was out of the hospital just in time to not eat Thanksgiving dinner with my family. But I was home.
Since then I have been great...better than great! No diet restrictions whatsoever. But now I do include a lot of fiber in my diet.
So here it is over a year latter and I can not recommend the surgery more.
I hope this dialogue will help someone out there.
I am a 45 year old guy with only one diverticulitis event that lead to a fistula within weeks. All better now!

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