Ileocecal resection for recurring intra-abdominal abscess?

[ausmike]

Hi All,

Firstly, it's awesome that this forum exists. Reading everyone's posts and comments has been a huge help already. I appreciate any info you guys can share on my situation (and sorry for the lengthy post):

Has anyone else out there has required an ileocecal resection due to a recurring intra-abdominal abscess and what has your experience been? I'm a little shocked/nervous as this has all come out of the blue for me. I'm 26 yo and to provide some context, here's how it's been going down...

I'm still in the process of being diagnosed with Crohn's - colonoscopy was yesterday and we are awaiting biopsy results - but both the gastroenterologist and colorectal surgeon are 99% sure that's what it is. It all started in early June when I was experiencing severe cramping/pain and a lot of urinary symptoms like urgency and pain after urinating. Eventually I got the chills, fever, and the pain was so intense that I went to the ER where they performed a CT scan. The scan showed terminal ileitis and and intra-abdominal abscess on the bladder - they suspected crohn's. The next day the abscess was drained percutaneously via CT and I was put on cipro & flagyl. The drain was removed 3 days later but I continued the antibiotics for a month.

Once I finished the antibiotics, the urinary symptoms and abdominal pain returned. I had a follow up CT enterography which showed the abscess had returned to the same place and the inflammation in the ileum was the same. I had a similar drainage performed and was put on cipro for a month. There was concern of a fistula to the bladder so I had a cystoscopy (ouch!) which seemed to show that was all ok.

At the start of August I completed the month of cipro and had a follow up MRI enterography. There is still persistent thickening of the terminal ileum and the abscess has again come back to the same place. I've shown no symptoms while on antibiotics and my BM's throughout the last two months have been normal. Now the recommended next step is an ileocecal resection...

Since roughly 3 months ago I thought I was 'fine' and now I'm facing surgery I'd love to hear if others have experienced similar sequence of events? Is this "normal"? Or have you had other treatment options that worked?

Thanks,
Mike

 

[Grumbletum]

Hi Mike and, first of all, a very big welcome to the forum. I'm so sorry you are having these issues but very glad that you have found the forum.
Reading your story, there are so many details that echo my own. The main difference is that they have identified Crohn's as the cause of your problems early on. In my case, they treated me with antibiotics for around 8 months and thought that my recurrent UTIs might be related to a grumbling appendix cos of the LRQ pain I had.
Like you I had an abscess, which was on my bladder, but I never had it drained. It shrank eventually after I'd been on antibiotics on and off, along with Mesalazine, Prednisolone and Azathioprine. I never had major D issues either, but the bladder problems were awful.
Even though the abscess shrank, and they thought the fistula had closed, I still had severe inflammation in the TI and they decided to put me on Infliximab. After the 3 loading doses I felt great, had a clear scope and they took me off it as I was deemed to be in remission. About 6 months later, I started getting the bladder issues again and tests showed that fistula had opened again. When they did the surgery, they found sever inflammation in the TI, even though I'd had another clear scope, so removed my ileocaecal valve and cecum along with a small section of my bladder.
I guess what I'm saying Mike, is that in this case surgery would probably be your best option. I know it's a huge shock, but intra abdominal fistulae are notoriously difficult, nigh impossible, to heal on medication.
If it's any consolation, I have felt absolutely brilliant since the surgery - the relief after 2 years of virtual bladder incontinence was amazing and the first time I'd felt normal again in 2 years.
If you have any questions, concerns etc, fire away Mike - either here on this thread ( might help others in the same situation ) or by PM if you'd rather.

 

[DustyKat]

Hey Mike,

Both of my children have Ileal Crohn's and have had ileocaecal resections due to complications.

My daughter was undiagnosed at the time of her emergency surgery and subsequent resection but with the complications they found, including a large amount of pus in the abdominal cavity, I believe she had a ruptured abscess amongst other things.

Due to my daughter's legacy my son's diagnosis was very swift indeed but despite this he quickly suffered complication after complication that culminated in a psoas abscess, phlegmon and fistula. When his abscess was located he had a pigtail drain inserted and few days later a sinogram which showed a connecting fistula to the terminal ileum. It was at this point that the Colorectal surgeons and Crohn's specialists agreed that fistulas emanating from the ileum are notoriously difficult to heal with medication. This is also where the abscess comes into play, they would not consider the biologics (Remicade, Humira) due to the infection present.

As a result of the fistula the drain stayed in for 3 months until his surgery. There is no point in removing a drain if there is a fistula feeding the abscess as it will only reform when the drain is removed. They waited this length of time before operating as they wanted the inflammation to move from acute to chronic. Doing this reduces the amount of bowel that needs to be removed as healthy bowel ends are required to anastomose (join). It also reduces the need for a temporary stoma as the inflammation will have reduced down to the permanently damaged areas of the bowel thus only removing what absolutely needs to be. So having a temporary stoma or waiting for surgery, if possible, becomes a bowel saving measure.

Aside from the drain remaining in place Matt's treatment over those three months was Imuran, weaned off Prednisone and two antibiotics. Flagyl for the intestinal infection and Crohn's and Augementin Duo Forte to keep the abscess infection at bay. The drain and antibiotics did their job very well.

Both of my kids had normal bowel motions throughout their pre surgery period too.

They have both done very well post operatively. They do have bile salt malabsorption diarrhoea but both control it with psyllium husks, plus there has been some natural take up over that time. My daughter had surgery 7 years ago and my son 2 years ago and both have been in remission since their ops.

Good luck Mike and if you have any further questions please don't hesitate to ask.

Dusty. xxx

 

[ausmike]

Helen & Dusty - Thank you both so much for the detailed responses. It really helps to know others have gone through similar situations and are now feeling really well.

In either of your scenarios was there the follow up need of monthly B12 injections? The surgeon mentioned that they'll need to remove approx 20cms of the ileum and that I'll require these B12 injections from then onward.

They would like to do the surgery asap to avoid having a fistula form, the abscess rupture, or having the inflammation spread further. Currently scheduled for the week of Aug 26th.

What was the recovery period like post surgery as well? I was told it will take a month to be back to normal.

Thanks,
Mike

 

[Grumbletum]

Hi again Mike
When I went for my post op appointment with my GI, I asked him about B12 but he said I didn't need it as my levels were very good. That was about 3 months after the surgery I think. I should maybe go for another blood test, but I feel so well and don't feel overtired at all which I think I would if my levels were low.
Recovery time depends really on the type of surgery. I would say that if it's laparoscopic ( mine was ) then a month is a good estimate. Maybe a couple of weeks longer for open surgery.
Something I'm a wee bit curious about, since they are saying a fistula has not formed yet, is why they are not maybe trying you on a biological ( such as Remicade or Humira ) to heal the inflammation and abscess.
Appreciate your thoughts on that Dusty

 

[DustyKat]

Hey Mike,

B12 - My daughter had quite an extensive resection, 69cm, so from the outset she was commenced on B12 injections every 3 months and this regime has been sufficient for her.

My son's resection was 28cm, 20cm of ileum and 8cm of caecum. So I am not sure if they are telling you the area of affected ileum only or are giving you a total resected length. Why I say that is when you have this type of resection done you need to have margins free of disease so a couple of extra cm's there and when disease is located in the terminal the valve and caecum need to be removed regardless of disease activity due to the anatomy of the small and large bowel...

As you can see, the ileum is attached to the caecum via the the ileocaecal junction, the caecum itself is a pouch at the start of the large bowel. To be able to anastomose the disease free end of the ileum successfully the valve and caecum need to be removed and the ileum attached the where the caecum meets the ascending colon. Of course you loose your appendix too. The caecum is about 7/8 cm long.

It was questionable as to whether Matt would need B12 supplementation post op so I went down the path of monitoring it. The terminal ileum is the only area in the body that B12 absorbed and bear in my mind that the body can store B12 for quite a significant period time so a deficiency may not be apparent for some time. If you do not have supplements, and some people don't require them, I would would monitor levels every 6 months. Matt has blood tests every 2 months due to being on Imuran so it is no bother to monitor. Pre op his level was 580 but by 3 months post op it had dropped to 237/238 and has stayed consistently there. This is within normal levels but at the lower end and from a personal perspective I am have not been happy with it, I want him back up over the 500. David has an excellent thread regarding B12 with loads of great info contained within it...

http://www.crohnsforum.com/showthread.php?t=28156

...as to Matt, he has just started having B12 injections 3 monthly.

I supplement according to deficiencies and what I have regularly monitored are:

Iron Studies
B12
Vitamin D
Magnesium
Zinc

It is not uncommon for those with Ileal disease to be deficient in Vit D, Magnesium and Zinc. Matt certainly is and I supplement these. They are not run of the mill tests so need to be requested. My daughter lives away from home and so is in charge of her own health but I do suggest to her the same as I do for my son.

The abscess - As to the biologics, they are generally contraindicated when an abscess/s are involved but this would be down to each individual case. What I would like to know from the doctors is why the abscess keeps recurring if no fistula is present.
What tests have you had done Mike to show the extent of inflammation present in the small bowel?
When you had a drain in did they ever do a sinogram to rule out any connections to surrounding structures?

As Grumble has said recovery will be somewhat dependent on the type of surgery you have. Certainly a laparoscopic procedure should provide a quicker recovery time to an open procedure. Both of my children had open procedures due to the complications involved. This will give you an idea of their recovery, ignore the time frames given in years as I have lifted it from an old post:

Sarah:
had a right hemicolectomy 5 years ago and has been in remission since that time. Her surgery was an emergency, she was undiagnosed, and so was performed as an open procedure. This is an outline of her post op recovery...

Surgery day - She was in theatre for approx 4 hours. When she returned to recovery she had oxygen, two IV's, two drains, an NG tube and an IDC (urinary catheter). She was in ICU overnight. She asked to go back to the ward the next morning. I think the surgeon wanted her to stay another day but she couldn't get out fast enough! Oxygen therapy ceased.

Day 1 post op - Moved to the ward and spent the day on bedrest. IDC removed. NG tube on free drainage and morphine IV remained on PCA (patient controlled analgesia).

Day 2 post op - No change with drains and tubes. Physiotherapy commenced. Up out of bed and gentle ambulation commenced twice a day. Although Roo refused to use a pan so started walking to the toilet that day.
Started eating ice chips.

Day 3 post op - One IV removed and condensed IV morphine and fluids into one. NG tube removed. Increasing mobilisation. Ice chips.

Day 4 - Bowels open. Commenced on clear fluids. Mobilising.

Day 5 - Tolerated fluids from previous day and throughout this day so commenced on light diet at tea time. Both drains removed and IV removed. Oral analgesia and antibiotics commenced.

Day 6 - Discharged home.

I don't know if being paediatric made a difference but each day she was visted by the surgical team twice, the physiotherapist twice, the pain management team once and the dietician once.

Sarah was in very poor condition prior to surgery so I felt that she didn't truly recover for a number of months. I would say she was running on about 80% for the first few months and reached full recovery after about 6 months. She returned to school 3 weeks after the operation and has now been in remission for 5 1/2 years.

Matt:
had a right hemicolectomy in April. It was planned surgery that was required due to an existing fistula and abscess. He had a pigtail drain in for 3 months prior to surgery.

Surgery day - He was in theatre for about 4 hours and recovery for 2 hours. When he arrived back on the ward he had one IV that consisted of the PCA (patient controlled analgaesia) and other IV fluids for hydration and IV medication. He also had one wound drain, a urinary catheter and oxygen.

Day 1 post op - No change with IV's or tubes and drains. Started mobilising and about an hour sitting in the chair.

Day 2 post op - Still no change with the tubes and lines. Commenced on clear fluids and continued with gentle mobilisation.

Day 3 post op - Urinary catheter removed, still on clear fluids, mobilising well.

Day 4 post op - PCA removed and started on oral analgaesia, remains on clear fluids, started farting, only one IV now left.

Day 5 post op - Last IV removed, commenced on free fluids, bowels open.

Day 6 post op - Commenced of light diet.

Day 7 post op - Commenced on full diet, drain out.

Day 8 post op - Discharged!

Matt had no issues post op and I feel that the start of week 4 post op was the real turn around in his recovery. It was at this point that he really started to move freely and shades of his old self started to appear. His recovery has been much quicker than Sarah's. He returned to school 3 weeks after surgery, was allowed to drive short distances after 3 weeks and long distances after 6 weeks but he was driving longer distances at 5 weeks. Started soccer training at about 5 weeks as well. He is also in remission.

The life savers in hospital for them were...TV, mobile phone, iPod, laptop with DVD's, ear plugs, comfortable loose fitting pyjamas/clothes, footwear that is easy to slip on an off, like slippers, magazines/books and short visits from friends when they were up to it.

They have both been on maintenance meds (Imuran) following surgery.

Dusty.

 

[ausmike]

Thanks again for the very informative and detailed responses!

Regarding the abscess itself, the doctors felt there is no fistula feeding the abscess since I have been off antibiotics for 10 days and have not had a recurrence of fever or night sweats. From their perspective, currently the abscess isn't currently being fed or infected. They thought that previously the abscess recurred due to the high level of inflammation and the perforations in the ileum would not heal over - which apparently now they have. To your point though Dusty, they never did a sinogram with the drain. I've only had 2 CT scans, 1 MRI and the colonoscopy where the GI doc says he was able to get into the inflamed area of the ileum and he saw pretty severe ulcerations (both MRI and the scope were in the last week). The colorectal surgeon mentioned that while they don't think there is a fistula now, the MRI isn't perfect and that's another reason we should do the surgery asap.

Grumble - The reasoning provided by the docs for not draining the abscess again and starting Humira first was (taken from the email he sent me): "Again, there is no right or wrong answer in your current situation, but we shared two concerns with Humira first; one is the possibility that the residual abscess makes you sick while you are on Humira due to immunosuppression. The other is the possibility that you develop bowel obstruction (from stenosis at ileocecal valve) while on Humira. " Ultimately they left the choice up to me and I decided to go the surgery route and start down the road of recovery and maintenance with a clean slate.

For the surgery, its meant to be laparoscopic and set for Aug 28th. They are putting me on cipro 500mg 2xday until then just to make sure the perforation doesn't reopen and there is no need for emergency surgery. It's a good point you raise Dusty about the length being removed. I think the 20cm only referred to the ileum portion but I'll check with the doc.

Overall, I'm feeling much more confident regarding the surgery, which I definitely owe to Dusty, Grumble, and just reading all the other posts throughout the forum.

Thanks,
Mike

 

[Grumbletum]

Thanks, Mike, and not long til the surgery then. I wish you all the best with that and hope that it sees you as well as I am afterwards. I could tell within a week of the surgery that I was going to be a whole lot better.
And thanks Dusty, as always, for the benefits of your knowledge and experience. I have another fecal calprotectin test in a couple of months, so I'll ask them to do a blood test to check my B12. Can't do any harm, right?

 

[DustyKat]

:lol: No harm at all Grumble!

Ah okay Mike...yes, the problem with the biologics is they do have the potential to heal a diseased area very quickly but in doing so it creates scar tissue, which in not ideal given the aperture of the ileocaecal valve and the small bowel in general.
Unfortunately no test is perfect so there is always a margin of error and microperforations can be difficult to pick up if they don't see air outside the bowel in a scan. And with that in mind I assume the surgeon has said to you that they won't know exactly what they will find until they see for themselves? The tests will be a good indicator for the surgeon Mike but just know that inflammation can mask/cover complications. That is not to say that the outcome you expect will be any different but don't be surprised if they say that they found this or that while they were in there. :eek2: :lol:

A planned op is far better than finding yourself in an emergency situation. Having seen both it goes without saying that a planned procedure provides a far better outcome all round.

Good luck Mike! I hope you have an uneventful surgery and super speedy recovery!

Dusty. xxx

 

[Melly92]

Hi Mike,
i'm sure you will have already gone in for your surgery by now but i thought i would share my story with you anyway.
i had Ileocecal resection surgery 4 weeks ago tomorrow.

i was diagnosed with crohns disease in late june last year and ever since ive had an extreamly hard time trying to get my inflammation under control. ive been on imuran to start with but the dose i was on was not helping so it was upped and then the constant UTI symptoms begun. i became very unwell and was started on humira in feb this year. Seemed like everything was going well since the start on humira until about 8 weeks ago. i had an attack which left me with vomiting, diarrhea and extreme pain. after 5 days it all past and i thought i just had a bug. i had X-rays and blood tests done but all showed nothing so my specialist just let it go.

unfortunately 2 weeks later the symptoms came back and i was admitted to the E.R that same day. i was then moved to a ward and given the devastating news that i was going to require surgery as it was quite clear that medication was no longer working for me. i was in the hospital on high doses on cortisone for 5 days before the got me in for surgery.

i had 19cm of bowel removed and it surgery was a success. The removed bowel was severely diseased with fistulas and narrowing. The first 2 days after surgery were pretty rough, the original medication they had be on for pain relief was making me sick so eventually after a lot of complaining of feeling sick i was swapped to a constant ketamine drip which helped 100%. I was forced out of bed and to start walking about 15 hours after my surgery which was horrible. after about 3 days i was moving a little more easy.

i went home 5 days after the surgery and getting home after spending almost 2 weeks in hospital was like heaven. each day gets easier and easier.

i am on flagyl for 3 months after my surgery to make sure i don't get any infection, the only problem for me with that is that i cant sleep on the it. so it will be a long sleepless 3 months but in the end it will all be worth it.

Anyway so far so good, i'm 4 weeks down the track and i'm feeling good, i'm back to work tomorrow after 5 weeks off.

Wishing you all the luck in the world for a successful surgery and also a very speedy pain free recovery!

Mel