Post op recovery, new diagnosis

[ZestforZen]

Hi Guys, well it's been a helluva few weeks from diagnosis of Crohn's to ileocolic resection (day 4 postoperative now).

For me the story started approx 5 months ago with lower abdo pains gradually getting worse. These responded to a couple of courses of metronidazole but after the third bout I consulted a GI and was diagnosed at colonoscopy 4 weeks ago.

There was obvious structuring present at the ileocaecal junction however it wasn't certain how much was acute and how much chronic. I started on steroids and azathioprine, but pains kept coming. Inpatient IV hydrocortisone didn't settle it so into surgery to remove the strictured terminal ileum. Approximately 20cm small bowel and 5cm large removed.

I'm interested in other peoples' recoveries from similar surgery. I had postoperative bleeding and have required a transfusion which has delayed recovery a little. How long did the melaena last if you had the same?

What are your experiences re. Painkillers at this point in time (I'm having paracetamol regularly and ending probably 4 times a day, feeling ok on this)

Also they don't seem to tell you much about the diet you should be on, what did you avoid in those early weeks?
How long was return to work, lifting kids etc?

I am likely to be on azathioprine and metronidazole postoperatively to prevent recurrence. Worried about immunosuppression as work in health care industry, but also worried about recurrence of Crohn's!

Thanks for your advice,
ZestforZen.

 

[Catherine]

No experience with surgery here. But one of the NSW parents DustyKat children I believe have had similar surgery.

Wishing you a speeding recovery.

 

[highlandsrock]

Hi ZestforZen

I had the same operation in October 2010 but ended up with a temporary stoma. I kept a diary going whilst in hospital which describes my recovery. If you're interested have a look here - http://www.crohnoid.com/p/oct-2010-post-op-in-hospital.html

I had an epidural for the operation itself but once that had become dislodged - 2 days post op - I only took paracetamol but very few. I was on Azathioprine post op. but I have had issues with it and was told to stop taking it.

I was allowed to drive after 6 weeks, once I could do an emergency stop without getting pain but lifting anything heavy was a lot longer. If you have keyhole surgery then these times do come down quite a bit.

After the op I was told to eat crisps, doughnuts, sweets + 3 Fortisips a day to build up my weight and strength. I was also told to put salt on my meals to make up for malabsorption from losing the end of the small intestine.

Hope you have a speedy recovery

 

[wildbill_52280]

for diet try trade milk for cheese to lower lactose consumptoms and avoid foods with refined sugar(sucrose) and large amounts of fruits. this is basically teh SCD diet, read the book called breaking the vicious cycle.

also, there is a new treatment in FDA trials that restores damaged intestinal bacteria and in a small trial may have cured another form of inflammatory bowel disease called Ulcerative colitis.it is currently being studied for crohns as well. read about it here- http://www.crohnsforum.com/showthread.php?t=52400

 

[ZestforZen]

Thanks for your replies, already feeling a lot better, going home tomorrow. Melaena has stopped just the runs now! (Sorry for the details!)
Looking forward to feeling normal again soon. Already enjoying eating again but have to build up as have lost a lot of weight, low albumin and low haemoglobin too.

I've always been a "bolter" of food so I'm going to try to slow down and chew everything really carefully, to make it easier on the bowel and also have the benefits of realising when I'm full not when it's too late. Plus I think you enjoy your food more when you are focusing on eating mindfully, anyway that's the aim.

Cheers, ZestforZen.

 

[DustyKat]

Hi ZestforZen and :welcome:

I am sorry for the late reply. I have two children with Crohn’s and both have had the same surgery as you, it was open surgery for both. My daughter’s surgery was 7 years ago and my son’s 2.5 years ago. They are both on Imuran as a maintenance med and both have been in remission since their surgeries.

I'm interested in other peoples' recoveries from similar surgery. I had postoperative bleeding and have required a transfusion which has delayed recovery a little. How long did the melaena last if you had the same?

Neither of mine suffered with maelena post op.

What are your experiences re. Painkillers at this point in time (I'm having paracetamol regularly and ending probably 4 times a day, feeling ok on this)

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. Pain was not really an issue for her post op but I think that was because she went undiagnosed for so long and as such pain became a normal part of life for her. Once the PCA was removed she didn’t take anything.

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 was 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.
Once the PCA was removed he was also on Panadol 4 times a day, stock standard for the colorectal ward I think!, plus Endone when needed. He used this a few times in hospital and once discharged I don’t recall him using the Endone again but he continued to use the Panadol occasionally. His pain was primarily on movement, so from laying to sitting, sitting to standing, that sort of thing and it was about the 4 weeks before he could fully straighten up without discomfort.

Also they don't seem to tell you much about the diet you should be on, what did you avoid in those early weeks?
How long was return to work, lifting kids etc?

With major abdominal surgery you should not lift anything weighty for 6 weeks.

Diet advice from doctors normally isn’t forthcoming to a large degree. Also you will find from reading on here that it is highly individual and what suits one won’t necessarily suit another.

My daughter, over time, has moved to a vegan/raw vegan diet, very limited sugar and no oils/fats. This is what she has chosen and it suits her.

My son prior to diagnosis had, what I realise now, pretty much moulded himself into a low residue diet, so quite bland. He has pretty much kept this up post op as it seems to be what sits best with him.

Neither found a great love for red meat post op and that has continued. They both also avoid fats/oils to a large degree as this is the one thing that will have them bolting for the loo.

They both use psyllium with great effect to control the bile salt malabsorption diarrhoea.

I am likely to be on azathioprine and metronidazole postoperatively to prevent recurrence. Worried about immunosuppression as work in health care industry, but also worried about recurrence of Crohn's!

My kids are not in the workforce full time and neither works in the health field but they do go to large universities and use public transport, my daughter in particular, and neither seems to pick up more than anyone else. TBH they seem to less inclined to catch the bugs that circulate.

Good luck, I hope the rest of your recovery is speedy and uneventful!

Dusty. xxx

 

[ZestforZen]

Thanks for your reply Dusty, very comprehensive! I am 11 days postoperative now, bleeding all settled by the day I went home from hospital (day 6 postop), pain very manageable on Panadol 8 hourly and endone once a day, probably able to stop endone in next day or two.

For others having similar surgery: definitely needing help in terms of bathing kids, getting meals ready etc but able to change nappy on floor, help kids get dressed and prepare simple meals now. I have arranged help for the next week though, as things like hanging out washing, vacuuming floor etc, are not really possible and do still get tired and sore in the afternoon.

Overall though feeling better each day. Thanks for your responses, they were really helpful when I wasn't really sure how I should be feeling, and just knowing that support is out there.

 

[ZestforZen]

Back in hospital again with high fever and chills yesterday. On IV antibiotics, having CT scan tomorrow to see if there is an abscess / collection.

Not having pains except for right iliac fossa pain (right where the op site would be internally!) with movement, thought I was just overdoing it but I guess should be pretty much pain free 18 days postop.

Feeling much better since antis, I tell you what though, I'm a bit sick of the whole thing! Looking forward to going home and staying home and feeling better!

 

[steph_irish]

Wow that was a whirlwind for you!!! I'm so sorry your having complications and I really hope you feel better soon. I'm just days into diagnosis myself, still waiting on results to see the extent of what I'm dealing with, I know my stomach's involved also. My consultants reaction says severe.... Ooh what fun Please keep in touch

 

[ZestforZen]

CT showed a cyst in the upper part of the liver, which may or may not be an abscess. Plan is to have 2 weeks of oral antibiotics then reassess by ultrasound /MRI / ct (not sure which yet) to see if resolved. I am also to see a liver surgeon. If it needs to be drained due to it's position they would need to go through the chest....needless to say I am not keen on this idea!

Hoping to catch a break for once and have it respond to the antibiotics! At least I will be off prednisolone tomorrow and also I am home for Christmas!

 

[steph_irish]

HI It's steph again.
Wow everything seems so aggressive for you now. I'm praying that you respond to antibiotics and catch that break.

I really hope you have a good Christmas x

 

[ZestforZen]

Thanks Steph, yes I was saying to my family it's about time I had some luck here! Fingers crossed the antibiotics work.

Hope your symptoms settle soon and you can enjoy your Christmas! Are you on a break from work or are you at the airport over the Holiday period?

 

[steph_irish]

For sure, my fingers are crossed for u also x
Yep I'm off until Feb, doc wants to get symptoms under control...I wish I had the energy to enjoy it.
SOoooo Bored of feeling ill, how bout u??????????
I love my food and ringing in the new year with a bottle of champagne (ALTHOUGH LAST YEAR I HAD 2 BOTTLES, that's another story )so feeling a little hard done by this christmas...it's the time of year we should gain a few pounds...not lose it
I went to docs today she prescribed buscopan..not settling yet, will just have to see how it goes.
take care of yourself x