Surgey

[joo]

surgey

hey guys now in my third week in hospital seen surgeon yesterday and GI today i have internal abscess and now possibily a fistuala i was told two months ago had 10cm of crohns in teruim ileum anyways over two weeks on antibitiocs and steriods and pentasa the abscess hasnt reduced at all and and u can see the lump where it is both docs think i should have a resection?? having a ct tomorrow to determine things

my knowledge of this is that the cut away the 10cm (hopefully thats all wouldn of spread would it) and cut the abscess and fistuala out? i know i will prob have to where a temp ileostomy bag not happy but afraid of abscess bursting itself.. how long do u normally where the bag for?

what are the complications of this operation? they said a planned one is better could be having it tuesday(2 days before my birthday not a good year) as my body will only get weaker lost 5lbs in two weeks only 7 stone 10lb now

gi doc also said i will have go on meds like remicade or humira or imuran after op which is dissappointing as i taught having sugery would eliminate these strong medicines... only dx in feb and only 10cm really mislead myself thinking i was a mild case but surgery so early on in my dx is heartbreaking just leaves me thinking its going to lead to more and more surgery and im only turning 20 in a few days

anyways thanks for replies in advance the forum has reali helped me in this difficult time

 

[DustyKat]

Hey joo,

If you have a fistula then unfortunately surgery is the option open to you. My son had surgery for the same reason 4 weeks ago today and yes they will remove the fistula, abscess and the inflamed section of the bowel. If it has remained at 10cm they will take a little more than that so that the margins are free of disease.

My son also initially had 10cms of terminal ileum but his did spread during a massive flare he had back in January when he was in hospital for 3 weeks. They tried to avoid surgery then, which they did, until the inflammation settled. I am hoping for you that everything has stayed contained, fingers and everything else crossed!

Matt did not end up needing a bag but if he did he would have it for approximately 6 months. I think this is a pretty standard length of time for a temporary ileostomy.

Planned is always better than emergency as generally the outcomes are better. The docs have an idea what to expect when going in and hopefully less bowel is removed. Sarah's surgery was an emergency and she had no post op complications and Matt's was planned surgery with no post op complications. I guess the complications during surgery may be the docs finding things they didn't expect but that really isn't a complication and post op would be bleeding or infection.

Surgery will fix things for now but it is not a cure so maintenance meds are recommended. Everyone has varying views on this but in my own personal experience with my daughter it has served her well and she will be 5 years in remission come July. I don't know if daily Imuran has made the difference but we aren't going to change anything to see! :lol:. You will see in my signature that Matt is also on Imuran so I am hoping more than anything he has the same result Sarah has.

It will be okay joo. The last thing I wanted for my children was surgery but it saved Sarah life and it is certainly giving Matt back his, it is obvious even this early on his recovery. We can't tell the future, perhaps that is a good thing!, but with the treatments available now there is a very good chance you may never need another surgery.

:hang: joo and let us know how your CT goes.

Thinking of you, :hug:
Dusty. xxxxxxxx

 

[joo]

thanks dustykat youv been brillant at explaining things

hopefully i wont end up with an ilostomy but i am preparing myself for it and beggining to think surgery is the best option had to cancel my final year exams in college and a trip to the states because of this flare

i think the small bowel follow trough test showed there was a stricture aswell in that 10cm but im also presuming taking the diseased part out gets rid of this god seems to be so much going on in this 10cms

so the ct scan tomorrow will show up the abscess the fistuala and the extent of inflammation is that right?

i hope the surgery sorts things out for a good while i will be so careful of my diet and nutrient intake hopefully will contribute to it re occuring

how does imuran affect matt and roo are the prone to colds and flus and other common infections?

great to hear they're doing so well after surgery gives me some sense of confidence as they are around my age i know thay are people out there suffering from alot worse but heck this diseaes has turned my world upside down in the space of 2-3 months

p.s you should become a nurse in this area i find your post really understanding and helpfull

 

[DustyKat]

Yeah, an ileostomy can never be ruled out in these circumstances as the docs don't really know what they will find until they get in there. All the tests in the world can't replace the surgeon actually seeing things first hand.

A stricture wouldn't be surprising in view of all the inflammation that you have. A stricture (scarring/fibrosis) is a side effect of chronic inflammation.

If the fistula is large it will show up but if it is a micro perforation it most likely won't because the inflammation will hide it. If this is the case what they should see though is air outside the bowel. It will show the extent of inflammation. Matt had a fistula and abscess that was identified in January but when they opened him up they actually found another fistula and abscess. This would explain why he never picked up between January and his op. The surgeon said that when they knew it was there they could see it on the CT Scan but prior to that they couldn't. There is every likelihood that your CT will give you answers but that is what I mean by the docs never really knowing until they get in there.

Sarah and Matt have had no obvious side effects from the Imuran. I don't think they are any more prone to infection. It is early days with Matt but Sarah seems to be quite robust with her health.

I bet it has turned life upside down and inside out! :hug:

Ahaha, I am a nurse, just not a gastro one.... Hmmm maybe I should change disciplines!

Dusty. xxx

 

[RFarmer]

Hey joo. As Dusty said, planned surgery is definitely the best option. And the meds aren't too bad.

If they take out that 10cm, then yeah, the stricture is completely gone. Unless it's not in the 10cm they want to remove. If that's the case, they'll probably just fix it while they're in there.

I'm on imuran right now, and get infections and viruses easily, and bad. BUT, I'm hoping it's going to put me in remission.

Good luck with your CT scan and possible resection!

 

[Ari]

Hi joo,

I had my surgery in mid feb and they cut a 20cm chunk of my ileum out. I had a growth that was affecting my TI, left ureter and my colon. They took it out and unfortunately for me they split my ureter in the process, so they had to put a stent in and wrap the ureter around it before they could stitch it up.

Apparently because my small bowel was severely dilated (you could see it moving under my skin) and the fact that they did some work to the colon as well they decided to form a stoma and the bag was the first thing I spotted on my tummy when I woke up in the ICU.

My stoma is only temporary and, as Dusty said above, I will have it for six months which is a standard length of time for people with crohns, although it can vary depending on the condition you have. When I was in the hospital there was a chap on the bed next to mine and he had a takedown after just 2 months, but his was due to bowel cancer, so I really don't know if we can compare.

The scariest bit for me was when they told me I had MRSA, but it was restricted to my abdomen only so they decided not to treat it with antibiotics unless it became septic. I was shocked, but I guess I underappreciated the strength of my immune system and now I'm fully recovered, apart from a few little things which are here to stay until they reverse my stoma and there's not a lot I can do about them.

Good luck with the scan and keep us updated.

 

[joo]

hey guys

got the ct results things havent changed abscess is still same size the described it as having a shell around it something like a orange and if you drain it you'd be left with all the skin inside the orange basically antibitiocs cant get at it cos of the shell and drainage wont be successful

surgery seems my only option have a fistuala going to my abdominal wall aswell so plan is wont know for defo till monday to go in take out the abscess fistuala and diseased bowel which is the very end of my small intestine the terminal ileum around 10cm they think and i hope not much more.

Gi doc says i will have a bag cause of the infection(of the abcess i think) team member of my surgeon said i'm more likely not to have a bag so i still dunno... for some reason i fear the bag the most just dont know how well i'l cope with it

i'm thinking my surgery will be tuesday but theyre not 100% sure the mrsa is gine from my open wound although the wound is quite small(from where the lanced the small collection of pus that rose to the abdominal wall) do yous think the will preform surgery with the mrsa there?

this pj drain thing does anyone know what that is will i have that?

how did they know about your uretha was it not until you were opened up sounds awful... did u have an syptoms when my bladder is full i get a real uncomfortable feeling i just think its from the pressure of the abscess and inflammed bowel surely the ct would of showed up if i had anything else wrong anywhere?

again thanks in advance for replies love this forum

 

[DustyKat]

Hi joo,

If you don't have any major complications, as in unknowns when they get in there, or extensive inflammation, the CT should have picked that up, then you shouldn't need a bag. An abscess in itself is not a reason to have a bag.

If they have no choice they will operate with the MRSA there. The fact that you have an abscess already deems you contaminated anyway! :lol:

Matt had issues with urinary frequency and discomfort and it was related to pressure from the second, unknown abscess. Both Sarah and Matt had problems with the inflamed bowel, terminal ileum, pressing against the ureter causing the kidney to swell, but Matt's resolved prior to surgery due to meds decreasing the inflammation and Sarah's resolved itself after surgery.

Do you mean a jp drain? It can be used to drain an abscess or if you are talking about post op then that is pretty stock standard following abdominal surgery. Matt had one that was in for about 6 days, it just drains fluid, blood/pus, away from the op site so pressure doesn't build around the wound. Better out than in!

CT Scans or any imaging can show a significant amount, however inflammation can hide things, and nothing will ever show exactly what is going on until the surgeon literally as a look.

Dusty.

 

[joo]

hey dustykat

just quick question what bacteria was found in matts abscess im on antibiotics for e coli as this was a bug found from a swab from pus from the abscess my surgerical team would rather my infection( e coli and mrsa) to be gone before preform surgery

i'm on tazocein for around 13 days now and gentimycein 13 days these foe the e coli and now vancomycein last 4 days for mrsa and possibily the e coli all iv's

how will the surgeons no the e coli wil be gone as my wound has stopped oozing? theres talks of me going home and coming back for surgery only thing is my abscess is still very much there?!?! was matt waiting long for his surgery?

the only positive thing i'm lookin at from waiting is possibily getting rid of all the infection through antibitiocs that their will be a better chance of primary resection and avoid the dreaded bag.... hope this is what my doctors are thinking too

any info on all those antibiotics would be great too the seem like alot and fairly strong?

hows matt doing his story seems similiar to mine only diagnosed and got a fistuala and abscess so soon lucky us eh?

oh yea always wondered what does hemicolectomy mean havent came across that word?

thanks

 

[DustyKat]

Hi Joo,

just quick question what bacteria was found in matts abscess im on antibiotics for e coli as this was a bug found from a swab from pus from the abscess my surgerical team would rather my infection( e coli and mrsa) to be gone before preform surgery

Matt had a Staph Aureus infection, so not the more complicated multi resistant one that you have. I can see why they would prefer to wait.

how will the surgeons no the e coli wil be gone as my wound has stopped oozing? theres talks of me going home and coming back for surgery only thing is my abscess is still very much there?!?!

Blood tests will help determine how the infection is going, WCC and CRP, and perhaps they will do further imaging before they do operate so they have some idea of what is going on and how the bowel and abscess have responded to treatment.

the only positive thing i'm lookin at from waiting is possibily getting rid of all the infection through antibitiocs that their will be a better chance of primary resection and avoid the dreaded bag.... hope this is what my doctors are thinking too

That was how they proceeded with Matt, wait until the infection and inflammation settle and then operate, so hold out until the inflammation goes from acute to chronic. Remember too that infection may also equate to inflammation.

any info on all those antibiotics would be great too the seem like alot and fairly strong?

I am not familiar with Tazocein but combinations of antibiotics is common under these circumstances. When Matt was in hospital in January, for 3 weeks, he had IV antibiotics for much of that time and was on Flagyl, Ampicillin and Gentamycin. Matt was discharged with a drain in place and remained on oral Flagyl and Augmentin Duo Forte until his op. I wouldn't worry too much about the antibiotics, they are a necessary evil with the infection you have going on. Have you had IV Hydrocortisone? I'm a little surprised they don't have you on Flagyl.

Was matt waiting long for his surgery?

When Matt was first admitted they gave a projected surgery time of 8-12 weeks and he ended up having it at about the 12 week mark. They really wanted to avoid emergency surgery because of the extensive inflammation, as that would almost guarantee a temporary ileostomy. He had one major set back with infection raising it's head again, whilst in hospital, but he overcame that and they were able to keep things under control for the 2 months he was home. So yeah, he waited 2 months from discharge in January for surgery but it was planned that way.

Hows matt doing his story seems similiar to mine only diagnosed and got a fistuala and abscess so soon lucky us eh?

Yeah, real lucky...:ylol:. Matt is 4 weeks post op now and doing well. It really is the best he has been since he was diagnosed 6 months ago. My fingers and toes are perpetually crossed in the hope it stays that way!

oh yea always wondered what does hemicolectomy mean havent came across that word?

In the true sense of the word it means having half of your large bowel removed but I think it is one of those things that take on a broader meaning over time. The surgery both of my children have had is an ileocolic resection but it is more commonly referred to as a right hemicolectomy even though they have had nowhere near half of their large bowel removed.

HTH!
Dusty. :sun:

 

[joo]

hey dustykat

2 months really? and was the abscess not sore or uncomfortable for him? if i do too much activity the pressure of the abscess really takes it out of me

yea when i was admitted i started on hydrocortisone for 5 to 6 days then when on to oral pred at 50mg now at 30mg leaving me there for a while also on pentasa

i was also on flagly iv for over a week and then orally for over a week but since the started this vancomycein the stopped flagyl.

i have no drain thats what is kind of worrying me the abscess is going to fill up with nowhere to go and brust:shifty-t:

well my doctors know how freaked out i am about having a bag although i admire all those with one theyre really strog people so maybe they are holding out to try their best to avoid one.

where did matt have his crohns? i have mine in the terlium ileum that connects to the large bowel doesnt it? so i'm guessing theyl cut away some of the large bowel too?

oh was also told my abscess has like a honeycomb centre with sort of a shell around it so radiology drainage wouldnt be much effective... getting to really hate this abscess of mine :mad2: also have an entocorteanous fistuala from this abscess although no drainage......

i'm eating good enough and having bm's gained 2 pounds in a week and bloods are improving having been told figures love to know facts lol
dont have a fever now and again have hot flushes that last for a couple of minutes,

tonight theyv stopped vancomycein as my bloods were a little high semingly this antibitoic reacts with your blood.

thaanks dustykat and send best wishes to matt and sarah

 

[DustyKat]

Hey Joo,

Yep, 2 months. He certainly had issues over that time but more related to having the drain in...hindered him a bit and by the end of it he hated it with passion. He also had issues with discomfort and pressure that would come and go to some extent but they could also palpate another mass. The did query a small abscess when he was discharged back in January and over the 2 months they had difficulty actually identifying the cause. Was it another abscess or inflamed bowel, the CT didn't really give any clues as to what it may be. Turns out when they opened him up he had another fistula and abscess that the inflammation was hiding, this abscess was more like a phlegmon though, that had adhered to the abdominal wall.

Sarah and Matt both have Crohns in the terminal ileum and yes, that is where the small bowel meets the large. If it is right at the distal end they will normally take some large bowel during the resection to ensure the margins they join together are free of disease.

I hope things settle and you can get things sorted soon! Sounds like you have had more than enough!

Good luck and keep us posted.

Much love, :Karl:
Dusty. xxx