Surgery arranged - advice gratefully received!

[Tummy trouble]

Hi there, I'm new to this forum and to the idea of having Crohn's Disease. Since having the pill cam last month to try and identify the cause of bleeding and pain I was advised this week that I have a tight ulcerated stricture in my small bowel. The pill cam was able to film for just three hours before stopping at the site of the stricture and as far as I have been told it is still there!
I am booked in for surgery on 13 Nov for a small bowel resection and removal of the cam - it's all been a bit of a whirl and I'm looking for advice and support with regard to the surgery and post op recovery tips. I have been advised that it is probable that I have Crohn's Disease however further analysis will be done following the surgery on the affected area to confirm a diagnosis. I have always been told I suffer with Irritable Bowel Syndrome and would estimate that I have suffered with the symptoms of severe pain, bloating, nausea, vomiting and fatigue since 1997 when doing my finals at Uni. I have not received any medications for this condition during this time, although I have had admissions to hospital for severe abdo pain with little follow up.
I'm worried about the fact that surgery is the first line of treatment. I would be grateful of any advice ........:sign0085:

 

[Jennifer]

Hi and welcome to the forum!

In this case its not that surgery is the first line of treatment. They're simply removing the section that's obviously been causing problems and removing the pill cam to keep you from having an obstruction (which can be deadly). Did you swallow a fake dissolvable pill before you swallowed the real pill cam? Not that that helps the situation now but in the future it'd be best to take a fake pill first so you can try to avoid situations like this. There have been some people on the forum who've had to have surgery to remove the pill cam and some did have the fake pill prior.

If you'd like you can read through some of the surgery stories here (mine is there as well): http://www.crohnsforum.com/showthread.php?t=30212

You'll want to start getting up and walking around as soon as you're able to help wake up your bowels. They had me start getting out of bed the day of surgery because I wasn't given a cath, I'm sure you'll get one though. I don't recommend getting up the day of because its pretty painful.

Hopefully you'll get a formal diagnosis soon and can start treatment as soon as possible. Even after surgery maintaining remission is important so you can help prevent further surgeries in the future. I've been in remission ever since my surgery 13 years ago and took 6MP and Asacol for many years then just 6MP and have recently switched to Humira as maintenance. Keep us posted!

 

[Pistol]

With the camera stuck due to the stricture it is really imperative that you follow through with the surgery. Obstructions are very serious and living with partial obstructions suck. So in this case it's not really the first line of treatment however hopefully it will be life changing for the positive for you.

I had my resection last November the removed 13 inches and my terminal ileum. If I could turn back time I would have done it 5 years earlier. I was stubborn and scared of surgery though. The fact is medication can help with the damaging inflammation but no medication out there can get rid of scar tissue that has formed from years of untreated inflammation. I started with symptoms in 98 and didn't get fully diagnosed and start medication until 2006 (military moves can make a chronic disease difficult to diagnose everyone wants to say it's IBS).

Surgery - Your surgeon will discuss with you how they will operate. They did mine laparoscopic and hand assisted. That means I had 4, 1/4in incisions and one 4in incision where they pulled out the diseased section. They were upfront with me and said they may need to make a larger incision while I was under.

Talk about pain control and make sure your recovery team is made away of your plan. I had a pain med pump after surgery and it was nice not having to rely on the nurse doing her rounds on time to push IV pain meds.

Look into clinical studies after your surgery. Research is being done on treating Crohns as a bacterial infection and it is promising. I am with this school of thought, mainly because 6 of my friends in my graduating class have all been recently diagnosed with Crohns or UC and my graduating class was less than 250.

After surgery I was put on a normal diet once I had a bowel movement in the hospital. I was surprised but the surgeon assured me I'd be fine and I was. I didn't make it to the bathroom in time a few times in the hospital. I was moving slow and my poop was not. Try not to be embarrassed the nurses have seen it all before and you’re not the first nor will you be the last.

Things i wish I would have known going into surgery

• I took a bunch of pj's to the hospital and ended up not wearing them, the hospital gowns are much easier to deal with and they wash them if you have an oops.

• I brought gloves and lots of socks cause hands and feet are always cold. Make sure you bring socks with traction they won't let you walk in slipper socks.

• Don't leave valuables out while you’re sleeping. It sucks that we live in that kind of world but we do.

• You will have to cough and sneeze at some point. Your initial reaction will be to hold it in DON'T! It will make it a million times worse. Bend over brace your stomach and just do it. It will hurt but nowhere near as bad as when you try to hold it in.

• Get out of bed by rolling on your side and pushing yourself up to a sitting position with one arm. (I have occasional issues with my larger incision site and still need to do this sometimes)

• My LOA from work was 3 weeks. It was enough time to heal and get off pain meds. I was in the hospital for about 4 days (yours may be shorter or longer everyone’s different)

• Don't be a rock star when you get home. You will get tired quickly and for several weeks if your out doing something and hit a wall it’s ok to go home and rest.

• Do what you can make sure you move and walk at home but let someone take on the bulk of work. I don't know your home life but try and have someone stay with you for at least the first few days your home.

• You'll probably have loose poop for a while. I still do if I’m not taking probiotics or if I eat poorly ie lots of refined starches , sugary foods, fatty foods.

• Probiotics help A LOT for me but when I first start them I have bad painful gas. It’s your stomach rebalancing and recolonizing with good bacteria.

Sorry I know this was long. I had a hard time finding good tips on this surgery and what to expect after surgery. Everyone is different but if you have any questions feel free to ask I'm not shy.

 

[Tummy trouble]

Dear Crabby and Pistol,
Thank you so much for your replies, as you can imagine it's a bit of a worrying time, so many questions and I didn't think of them at the time when I saw the surgeon.
I have had previous abdominal surgery - 3 caesarean sections -so I'm not too worried about the pain post op as I think it may be on a par with this, and it was definitely a case of get moving as soon as possible and keep moving! I am however concerned about how I will manage to eat post op, how I will react to foods and any further weight loss. I am also a single parent to three boys who are lovely but need their Mum to be recovered as quickly as possible, although I will have good support from family and friends too.
I don't know how they will manage the condition post op, but I suppose that depends on what they find after analysis......
Thanks again for all your advice, the support means a lot to me

 

[Jennifer]

I know for me I did a liquid diet for about 3 days post op then was finally allowed food on the 4th day. I don't recall having any issues with the food at all. My biggest issue was the healing since I was still on steroids so I got an infection which made my recovery a lot longer. Just take it slow at first when you start adding food. If you're throwing up, might want to stick with the liquid diet for a while (another member on here kept vomiting after surgery yet the hospital kept trying to force food for some reason). Try softer foods in the beginning and work your way up. Keeping a food diary post op may also help.

They usually let you out of the hospital within 5-7 days but recovery continues at home. Don't do heavy lifting for a while and might want to basically just rest and take it easy for a couple weeks.

If you notice any extreme pain, start vomiting, fevers etc (signs of infection), then go back to the hospital right away. I laid down and just threw up all night until my surgical site broke open. Didn't realize I had an infection.

Hopefully yours goes as smoothly as possible with a very quick recovery and no complications!

 

[warge]

thank you for the clear description of what happens after the op i am due to go in on 9th Nov and was worrying a little but you have set my mind at rest a little and i will go through this knowing a little more, thank you for being so helpful

 

[Tummy trouble]

Hi Warge,
Glad this thread has been helpful to you with your forthcoming surgery. If you don't mind me asking what are you having done, perhaps we can support one another since our ops are happening around the same time ??

 

[warge]

I am to have 50cm of the small intestine the valve and a small amount of the large colan. I think it is called the terminal illieum. It will be done by keyhole surgery and hopefully it will be mean my recovery time may be quicker.

I go in on 10th Nov at 7am and they have said i will be in 5-7 days. Hopefully I will be up and about and healing quicker.

Good thing i like walking a lot, shame it is winter. Never mind you cant have everything.

It has been a bit of a whirlwind situation for me. Have had problems for about 18th months or so which have been getting worse. Have had all the test, endoscopy, colonoscopy, sigmoidoscopy, MRI, CT scans and still not got a proper diagnosis. They keep saying it is consistant with crohns. I suppose once this is done I will know for definite. Apparently the tube is scarred badly and inflamed. I am now on a low residue diet which I hate and am so tired.

I also have lots of allergies so the anaesthetist is going to see me on Friday to go through things with me. Just a wreck I think but I have a good sense of humour and think of the glass half full so I will be OK.

I am so grateful that this forum is here so that I can see how other people cope and what happens to them.

 

[Tummy trouble]

Hi there, I can fully appreciate the 'whirlwind' that you describe and also having to wait for surgery to confirm diagnosis. I think through reading some of the surgery posts on here the trick to successful post op recovery is to go at your own pace but to be determined to get moving....good job walking is so beneficial, I think we will both be doing plenty of it on the run up to Christmas!
Good luck with your surgery