Ileocecal Resection

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leithcote

leithcote

Joined
Nov 27, 2010
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The countdown begins... approximately 4 weeks to go until I go under the surgeon's knife for a laparoscopic ileocecal resection. Hopefully I shall be able to document my progress as we go. Still in two minds about the op, on one hand looking forward to getting my life back and hopefully some energy (!), on the other worried about the procedure, the knock-on effects, and the scars (however small!).
 
Good luck! I'm right there with you..going through a resectioning friday! After that job and school once again! Are you on med leave from work or unemployed? I am scared about not being able to make it to the bathroom on time, losing weight, and getting dehydrated..I hope you keep me updated..I'll be posting after surgery.
 
Thanks guys :) I hope he's alright..So archie, how long did it take for you to recover? Did you ever have an accident or lose weight?
 
Pretreatment with biologics?

I am scheduled for an ileocecal resection on March 12,2012. I was hospitalized in December with obstruction, my 4th obstruction in 5 years. I have decided to go pro active and plan the surgery. I was more nervous about having to make the decision to have surgery in an emergency situation. I am now seeing the top doc in Boston, I am educated about the surgery and all the new treatments. In the mean time I am working on gaining some of the 15 lbs that I lost, going to physical therapy, and just enjoying some time off from my hi-level job.

Does anyone have experience in getting biologics(remicade) prior to surgery? I have strictures and fistulas, I'm on prednisone, but can't wean because I get pain when I go down on the dose. I am looking to get three infusions prior to surgery.

The research show longer remission on biologics, but ad long as you stay on it. I had a reaction to azpthioprine, it caused pancreatitis, so I a putting hopes into the remicade.

I would Love to hear any comments that you have.

Jo Ann from Boston
I've to
 
I've never used it, but humira is all human dna where as remicade is human and mouse dna..just thought that was an interesting tidbit that I learned. There's plenty of sites about the two..it's on wikipedia as well.
 
Rain said:
Thanks guys :) I hope he's alright..So archie, how long did it take for you to recover? Did you ever have an accident or lose weight?
Click to expand...

Hi Rain it took about 5 weeks to recover and no def never had an accident, the opposite actually find it hard going sometimes but that is unusual for this type of surgery as diarrhea is common due to the IV valve being removed, I have 'dicky tummy days now more like IBS. I only lost about half a stone but have since gained it back. I was able to eat a low res diet straight away and was in hosp for a week. The first week was quite rough with gas pain and it took 6 days for my bowels to wake up but I felt much better after that. I had an epidural which actually gave me more probs than the surgery and actually I wasn't that sore in my tummy anyway so in hindsite didn't even need it. Good luck an hope it all goes well.
 
BEst of luck. I had one of these performed in October 2010. Gave me about 3 months remission and Ive been messed up ever since. Pain. Nausea. Feel like crap. MY disease wont ever give up. Hopefully yours brings you better luck
 
I'm sorry to hear that.. :( That's just awful..Did you have an ileostomy before getting re-sectioned? I'm currently in the hospital right now. Surgery went well, but the pain meds and anesthesia are making me nauseated..Sadly the zoprahn doesn't help much, but marijuana always helped..Not legal in oklahoma yet..Thanks for wishing me luck in all of this. I hope you start to get better some how. What meds are you taking? Keep me updated.
 
So... it's Sunday, and my surgery is scheduled for Tuesday morning. I had a very useful chat with the Staff Nurse last week, during my pre-op interview, who took me through the procedure and what I can expect to happen. The operation itself will be done laparoscopically, and I should be left with just some small incisions (for the camera itself, plus the various manipulators) plus one slightly larger one - roughly where my appendix was. Everything will be done under a general anaesthetic, but an epidural will be put in place beforehand, to allow pain relief to be easily administered one the operation is over. I shall also be catheterised for a few days, as the epidural means you can't control your bladder properly (lovely !). They are also going to try and fast-track me, which essentially means that they are going to get me up and about and moving as soon as I come around enough from the generalCookie—Cookieto encourage my bowel to start working asap — something I guess I'm not going to be looking forward to...

Rain — hope the recovery is in full-swing. I can share recovery stories with you on the other side!

Archie — interestingly, I've been told that the surgeon will try and leave the ileoceacal valve intact, so I guess my "tricky corner" (as my consultant christened it) it is quite localised to an area just before this.

Tony.
 
Good luck Tony tbh the epidural gave more problems than the surgery I couldn't wait to have it removed as it was hitting a nerve and the actual surgery site wasn't that sore so in hindsite I wouldn't have it again. Don't panic though that's unusual to happen it's only cause I have a slight curve in my spine. I did have 2 before lower down when having children and they were a godsend and no probs with the epidural on those occasions!!! Wishing u a speedy recovery for tues I also had keyhole assisted surgery 3 tiny incisions and one 5cm incision through the belly button.
 
Ileocecal resection

My surgery is now postponed. The medical team wants me to go on Cimzia (certolizumab pegol). It is an injectable vs. intravenous. Does anyone have any experience with this drug?? I had a MRI that showed a 12 cm mass in my ileum and they are hoping to get some shrinkage and hopefully resolution of the disease before surgery is planned. I am now almost weaned off of the prednisone (10mg), I still get tremors when I take it, so I am looking forward to being off of this.

The Cimzia was delivered, but I am waiting to see my MD before I get the first dose.

I welcome anyone to comment on this drug.
 
It's the night before my surgery, and up till now I've been fairly ok with the whole thing. Starting to feel a little apprehensive, but I guess that's quite normal. I've had no solid food since 12 and my tummy is now gurgling away! I've been able to have clear fluids (black coffee, clear soup), but now have to stop eating or drinking anything - and I'm not quite sure when I'll be eating again! Got to be at the crack of dawn (well for me anyway) to be at the hospital for 7:30 am. So will try and get some sleep at least. Many thanks to all who've passed on their good wishes. Tx.
 
Aw, Tony, hope you can get some sleep and all the very best for tomorrow. Wishing you a speedy recovery and a long lasting remission. Big hugs x
 
Well, that all went quite smoothly. I didn't even realise that the anaesthetic had even been injected! I wasn't even convinced that I'd had the surgery until I sneaked a peak until the blanket and saw the steri-strips! I have three small incisions, one in my belly button, and a slighter longer incision on the right. A very neat and tidy job indeed.

I also have an epidural ithat is doing its job, as I really am not feeling any abdominal pain. Some pain in my right shoulder, which is apparently referred pain from the gas trapped under my diaphragm (they inflate you so that they can get good access to your insides), but it comes and goes. Recovery signs are also good, as I'm already gurgling away and passing wind! A catheter is dealing with the urine for now, whilst the epidural is in place- I'm also drinking like a fish, as I'd forgotten how hot these hospitals get!

Had a minor "moment" earlier today though, as they got me up and sat in an armchair. I was fine for a couple of minutes, but then got very sweaty, dizzy and rather nauseous. But the nurses responded very quickly, and got me back in bed pretty pronto, where my blood pressure then stabilised quite rapidly.

I've had some Chicken Consummé and I've been told that I can have Corn Flakes and some for breakfast. Yay! I'm sure tomorrow will be a bit more challenging, as they will dial down the pain relief from the epidural, but so far so good.

The surgeon has removed about 30cm of small intestine, plus the ileocaecal valve and a small bit of large intestine. Apparently the terminal ileum had gotten itself into a bit of a mess, and had folded up on itself, concertina like, and stuck together in a ball or mass. I was also told that if it hadn't have come out today, I could have been sure of another trip to A&E with a big flare-up! Glad I avoided that indeed.

Sorry for the long post, but it's good to write it all down. If anyone has any questions, I'm more than happy to answer. So goodnight from Brighton, in the UK.

Tony.
 
well done your surgery sounds the exact same as mine and i've recovered well so wishing you a speedy recovery, remember take it easy i didn't believe people when they told me that but now I do!!!
 
Thanks Archie - glad to hear that your recovery is going so well. V. pleased for you indeed. I fully intend to rest as directed. I work as a Research Scientist, and will be glad for a few, relaxed, hopefully stress-free weeks before I return to work! Best wishes. Tony.
 
Wow! Didn't expect to hear from you so soon :) Sounds like a good job that you went for the surgery: don't think meds alone would have sorted that lot out. It's great to hear you sounding so bright and cheery. Rest up and heal well x
 
Thanks grumbletum. Have to say I too am quite surprised to be feeling so bright. Think I have the epidural for another day, then I suspect I'll be slightly more worse for wear. And yes, I think the surgery option was definitely right for me. I was still flaring even when on steroids or mercaptopurine, much to my consultant's concern. Seems obvious now why, as everything was having to negotiate brands hatch (formula 1 race course) or spaghetti junction (infamous UK motorway interchange)!
 
Got rather faint today when they got me out of bed and sat in a chair, rapid heartbeat, sweating and feeling very dizzy (apparently fairly normal after a general and abdominal surgery), unfortunately my epidural was dislodged as they got me back in bed, so that method of pain relief isn't now available - shame, as it was amazing. Now on Oromorph, a day earlier than scheduled, plus an injection of a heavy-duty anti-inflammatory (sorry, didn't get the name) to keep the pain under control. Not as effective as the epidural, but takes most of the edge off the discomfort. Still a bit bloated and distended, but it is only day 2! Catheter will come out later this evening, so one less tube to worry about. Still no sign of the elusive number 2, but toast, cornflakes and an omelette should help that along.
 
Yea, you're bound to be a bit wobbly after all the rootin' around inside, anaesthetic etc. I had stomach surgery years ago and a neat line of staples down my middle. I remember being quite nervous about that first post-op poopoo. I thought, even if I strained a little, I might burst open like a sausage!!!
( I didnt, I hasten to add. )
So how does it feel now you have a nice straight motorway? Lol. I guess it might be too early to tell the difference it made to the symptoms you were having?
 
Thanks grumbletum. I think I'll be a wee bit happier when I've managed to produce something! Early days yet, but food is going in, just want some to come out again.
 
Eek, using Tapatalk on my iPhone to look at this forum - It's all a bit too easy to do things you don't mean too! I've managed to unsubscribe from my own set of postings, and I think I may have banned someone by accident, but can't how to undo it. A million apologies if it's you! <hangs head in Oramorph stupor and shame>.
 
ha ha thats so easily done I think i reported someone by accident!!! my elusive number 2 took so long to appear even the porters had bets, oh the joys you have to laugh though or you'd just cry, I had a week to wait and my sister was feeding me something silly I thought I was going to burst literally... it did take about 3 days of laxatives also :~
 
Well, the food I eat yesterday did come out, just at the wrong end! Ooh, was that uncomfortable! Doctor's now think I might be one of those people who don't tolerate Oromorph :-(. A paracetamol and Tramadol combo seems to be working slightly better though. Archie - glad I'm not the only one who's managed to accidentally report someone! I'll also be more patient regarding the wanted appearance of an old friend. One day at a time eh?
 
Definitely the Oromorph. That's been scrubbed from my allowed prescription list. Vomiting has now stopped thankfully, and I've been up and about, and had an absolutely blissful shower! Mmm, clean! Been dosing quite fitfully today as well, but time really does go by quite slowly...
 
It seems like your doing quite well. :) I went three days before having a bm, after my surgery. They had me take a blue pill everyday to get my bowels moving again. After I started having the bm's, they released me the next day! I hope you go soon. :D Good to hear that your doing well. Keep up the good work!
 
Had a BM yesterday. It seems quite obvious in retrospect that it'll mainly be made up of blood(!) but a little shocking never the less! Food going in is still a little tricky, as I'm getting a lot of uncomfortable trapped wind. But, been up a few times now, walking up and down the corridor, and then back to bed! Quite exhausting. Obviously this isn't the most pleasant thing in the world, but so far it's pretty much what I expected, somewhat better in fact. T.
 
Ouch! Trapped wind is horrible. Sipping hot water can help sometimes. Congratulations on the BM and hang on in there. Sounds like you are doing pretty good :)
 
Today I declare a good day - minimal discomfort, minimal pain killers, up and walking around, and staying awake for more than 15 minutes at a time! Plus some lovely guests, although they did go to the wrong hospital initially, doh!
 
So, still no formal BM - the previous one's apparently didn't count as they don't consist of food put in at the top end :)-O !). But Rice Krispies this morning, and two small pieces of toast, plus two bowls of (well-cooked) vegetable soup yesterday, things should hopefully start to happen soon.

My love/hate relationship with all things Opiate seems to continue. Although I can seemingly tolerate Tramadol, it does brings on a temperature "rush", making me very hot and bothered, and rather sweaty for a period of 20 minutes or so. However, for the pain relief it offers, I think I'll just grin and bear it and cope.

The dressings on my tummy were changed yesterday. I was a little apprehensive, as the Nurse uttered the immortal words "this shouldn't hurt" - yeah, like right, when does it not ever hurt! But he was absolutely right, no pain whatsoever. Scars, what I see of them, are going to be small and neat, although they didn't change the dressing on the longer incision, so I don't know what that is like yet. The one in my belly button looks a bit odd too! But I am blessed(?) with the biggest "inny" in the world, so it should hide most things!!

I'm hoping / likely to be discharged at some point tomorrow, all going well today - so fingers crossed. I'll probably be updating my little surgery diary a little less often, but will keep posting - as I think it's valuable to share these experiences, so that other Crohnies can get an honest viewpoint of what to expect (although I know everyone's experience will be different, not mentioning the UK/Europe/US/World differences in approaches to treatment and surgery!). Right, enough waffling for now. Tony.
 
Goodness, like waiting for busses... and two come along in short succession!

Just seen my surgeon, being discharged tomorrow - Yay!
 
Yaaaaayyyyy! That's great. Enjoy the escape. Have you got folks that can help you out at home? No overdoing it, now. Nag! Nag! x
 
At home, safely ensconced on my sofa, watching yet more daytime TV. Been sent home with a cornucopia of meds though! I should set up a Pharmacy.

Thanks, Grumbletum, I do indeed - my partner has taken the week off work, and is relishing the role of nursemaid; I'm sure it'll wear thin quite quickly though!
 
So into the rest and recuperation period now. Daily dosing of Paracetamol (2 x 500 mg; 4 times daily!) and Tramadol (1 x 50 mg at midday, and 2 just before bed) is keeping most things under control on the pain / discomfort front, which I have to say is surprisingly minimal.

Toilet, is though (as to be expected) a little erratic. Some very loose stools today - but hey, stools nonetheless. Maybe a little early for scrambled eggs?!

Been outside for a short walk around, which was lovely, but quite tiring. So back on the sofa for a bit.

Follow up appointment with the Surgeon in 4 weeks time.

Tony.
 
I had my surgery on Dec 7th, 2011. I did a half-marathon three days before. It helped with recovering faster because I was in great shape. However, I lost about 40 pounds of muscle mass after surgery. I have put ten back on, but it is a lot harder without the help of predisone, lol. DON'T RUSH to eat meat!! I ate a steak a month after surgery and now I just eat fish.
 
why just fish? I was expecting the worst after my resectioning. I only have nine inches of colon and yet two days after surgery I was able to eat anything I wanted (aside from nuts, seeds, and popcorn), so it was all surprisingly good. It's been a month since the surgery and I am only going 2-3 times a day. I hope it will be the same for you. :)
 
I'm still in the early days of recuperation, but I'm certainly going to try everything! I've had to avoid mainly spicy food in the past, but am definitely going to try and eat a curry (mild to start) again!
 
definitely! It's best to start slow of as you know, but I don't see any reason to avoid eating things once your healed up more. Why deny yourself the food you love!
 
Get well mate. :) I had my surgery in feb last year and been able to eat pretty much what I like ever since.
 
Hi there!

I'm 3 days post op here after an ileocecal resection (laparoscopic) and will be discharged tomorrow. Haven't gotten anything else but wind out so far, yesterday and today I've had normal food (soup, bread, sausage stroganoff & potatoes, ice cream, curd...) but still no poop yet. I've been walking a lot and I've used exercise bike too. Guess soon something will happen, b/c two days of normal food just can't stay in there forever! :cool2:

Glad to read you're doing well! Hope you'll continue posting how things are going for you.

Best wishes,

Suvi
 
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Hey Suvii - hang in there, it *will* happen! It took 6 days post-surgery to produce my first bona fide bowel movement. Just don't strain to go!

Stickman7755 - I'm SO looking forward to a bath. Most of my steristrips have come off now (after several days worth of showers!), except my longer incision which is still covered up. I've been told I can bathe once those have come off under their own steam as it were!
 
Ok, update time.

I'm doing pretty well I think. Painkillers are really just Paracetamol during the day, and Tramadol to see me through the night. I'm pottering around during the day, and venturing out for short walks. I get tired quite easily though, and so a lot of time is still being spent on the sofa(!). Saying that, I am trying to do a little more each day.

The steristrips covering my two small (1cm) incisions have come off, and well as the one in my tummy button; which is still a little swollen and bruised. My long incision is still taped over, and doesn't seem to be budging yet - I shall leave it well alone!

Still having a few issues with low blood pressure though, especially after eating and getting up out of bed, or off the sofa. Think I might need to get my blood count done, and make sure I'm not too anaemic. Shall sort that out tomorrow with my GP.

Apart from that, little by little, I'm getting back to some resemblance of "normality"; whatever that may be. Still another two weeks before I attempt to return to work - initially part-time.

Tony.
 
1st March Update

Ok, another little update. Things are progressing very nicely indeed. All steri-strips have come off (with a tiny bit of assistance), and I'm religiously rubbing in BioOil every day (apologies for the product placement).

I'm still getting tired quite easily, and my blood pressure is still on the low side. Popped along to my GP today, who's agreed to take some blood and do a whole series of tests, including B12, to see what's happening.

Apologies for the image linked below - hopefully not too graphic - click for the full sized image! ;) - but I thought it would be good for others having the same type of operation, to see what they can reasonably expect. And note, this is only 2.5 weeks after the actual surgery!



Tony.
 
That particular surgery took me to 360 deg. better afterward. I hope it is the same for you. They didn't have this procedure available with laparoscopy when I had it in 2001, so it is good that you will have less time under anesthesia, a quicker recovery, very little/minor scarring. You may want to consider a low-FODMAPS diet, basically less sugar and complex carbs once your valve is removed, as I have found that very helpful for better/ more comfortable digestion in the long-term. I think you'll be really pleased with being rid of the area of inflammation! Many symptoms lessen greatly or go away with it. Take care.
 
How is your diet?

I have been considering surgery for years now, and am really curious to know how your healing goes.

Thanks,
Dave
 
wow, Tony! Your incision sites look great! they are soo small! I'm glad things are going so well. If you don't mind me asking...what type of job do you have? I'm a nurse aide, and it's been a month since my ressectioning. I am so afraid to go back because I know I'll have to do a lot of lifting.

Here's a pic of my scars.
 

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Wow Rain, looks like they had to do a lot more to you..(!) Hope it's all healing nicely now though. To answer your question I'm a Research Scientist, and I run a team of people funded by Cancer Research UK, who are trying to understand the various processes that can lead to the onset of Cancer, and to help find new avenues of treatment, i.e. new drugs. Luckily, I can tailor my return to work, and will spend a lot of my time at a computer, slowly returning to the bench, as and when I feel able.

I too would be a bit nervous returning to work, especially if heavy lifting was required. Can you get special dispensation/altered duties considering the type of surgery you've just had? Just show your work colleagues the pictures or even the real thing?!

I have another week before I return to work, and am quite looking forward to the mental stimulus! Daytime TV really is rubbish.

Here's to rapid healing and minimal scars. Tx.
 
Illeocecal valve removal

Hi everyone !! I 'm new to this forum.
I had an illeocecal valve resection a month ago.
They also removed the cecum and centimeters from samll and large intestines.
Unfortunately I wasnt able to have it done laperscopically.
But that actually worked out to my benefit. When the Doctor opened me up he discovered that my small intestines was attached to the mesh that was put in to repair a hernia. So he took care of that.
I was in the hopsital for 9 days. I stayed longer due to the fact that the incison geot infected and they had to open it up. I now am dealing with blister that they believe came from the staples.

My bowel have been still been loose.
I was first put on a low fiber diet ; but now I was told that I can eat what I like with the exception of seeds and nuts. I haven't really been eating and have lost weight.


I was wondering if anyone has experienced pain after they eat or pain under there rib cage . Also vomiting.
You know that doctors can only tell you so much. I dont want to run back and forth to the doctors every minute for every little thing.
So I'm wondering if this is normal. Because according to the pathology report they didnt find any active Crohn's disease.
 
Here's my scars photographed on the 13th postoperative day. They're so tiny and little - couldn't be happier! My surgeon also took off my two navel jewel scars, nice extra service, huh? :thumleft: You can see the two laparoscope scars and the incision above my belly button. Also there's one laparoscope scar just under my pantie line. The small dots and bruises are from Fragmin-injections. No staples, all of my stitches are absorbable (=melting?) too.

6820725616_1eb5bf503d.jpg
 
This is my first post. I had 16 inches of my terminal ileum removed on March 7th. They also removed my appendix and connected the healthy remaining ileum to my large intestine. I happened to be apart of the 2% of the population that had a second appendix (meckel's diverticulum) which they removed as well. It was all done laparoscopically. Only 2 days after the surgery I was able to pass gas at which point them put me on soft foods. A day later I was able to have a BM (loose). At that point on March 10th I was released from the hospital. The first day I was home I needed some pain medication. Since then I havent needed anything as the pain was not that bad. I guess I have a few questions from the people who have had similar surgeries.

1. I have a hard time standing up straight and my back muscles are so sore as they are doing all the work when I walk around. Is this common?

2. How do you sleep? I usually sleep on my stomach so that is just not happening. I tried on my back for a few nights but I found myself on my side but that hurt.

3. Ive had some pain where the incisions were made. I know that is normal because they had to get through the muscle layers but I am having some pain in the lower right section of my abdomen. It feels like pressure. If I take a deep breathe in or hiccup it hurts. Is this common?

ps- the surgeon took a picture of what they cut out. if anyone wants to see let me know
 
Thanks to all of you for posting your stories on this forum. It's a wealth of information that, quite frankly, can't be found anywhere else. I'm scheduled to have a right hemicolectomy on April 4. As part of that surgery, the doctor will remove the ileocecal valve. As far as bowel movements after the valve is removed, what is it really like? Are you running to the bathroom 10 times a day or is it pretty normal? I don't want to have a meal at a restaurant and all of a sudden have to dart to the bathroom praying all the way that I make it in time.
 
Switalski,
The ileocecal valve (IV) is a bit of a funny one. It's job is supposed to be controlling the flow of material from the small bowel into the large. For some people, it is a genuine valve, and when it is removed, they can have some problems with diarrhoea - although this can generally be controlled by diet and medication. In others, it doesn't really seem to matter that it's gone at all.

I guess I'm quite lucky, as even before surgery I really didn't have too many problems with diarrhoea, and I don't seem to have after either (and my IV has gone, along with my appendix). Saying that I am finding that some foods lead to more watery, loose stools - but not to such an extent that I need to immediately dash to the bathroom.

Good luck with the Surgery, I hope it all goes well for you. Thus far, mine has been the best thing I could have done. With regards, Tony.
 
Gmen,
I too, initially had a few problems standing up straight after my surgery - with some back pain also. After a few days of walking around and some v.gentle stretching, it soon sorted itself out!

Sleeping too, at first was a little uncomfortable - I have to say I relied on my painkillers (tramadol) to get me thought the night - but after a while I got used to sleeping on my back, and eventually I was able to return to my normal sleeping position (on my left side). Again, time and patience are great healers!

Pain and discomfort in the lower right quadrant, again is quite familiar! It will take a little while for things to heal, become less inflamed, and generally more comfortable - you *have* just had some quite radical replumbing! If the pain becomes intolerable, of course seek help, but I think, yet again, it will settle down with time.

I *am* surprised however that they let you out of hospital so soon! Just 3/4 days after surgery! So I'm not surprised you're still in some pain/discomfort. Take it very easy - and give yourself time to heal properly.

Tony.
 
Suvii - Wow! Those scars are TINY - you should let everyone know who your surgeon is, so that we can all get in on the act!

Tony.
 
thanks!

Leithcote thanks for all this, it is exactly what i went through too! I hope you are recovering well! here's some of my experiences, for others who may have it to come:

Gmen3983 – i found i have back pain too, think it is just trying to avoid pain by standing straight. The physio visited me after my surgery and encouraged me to walk with my head up and not bent over, she also stressed the need to take 5 big breaths every hour, because when your stomach hurts you are less likely to breathe properly, and not breathing fully can lead to a build up of mucus in lungs which leads to coughing (which hurts!!)
I have now just got to the point where i can sleep on my side with a pillow for support (12 days post surgery)- sleeping on your back is the only option! I have similar pain in right lower ab, and when i lie down that part sits up and looks inflamed- i’ve just concluded that its all still healing and the stitches in there are still binding?!
(I’d love to see what they took out Gmen3983!! – thats probably weird and gruesome :hallo3: lol but i’d love to see it!!)

Switalski – i was worried about the loss of the valve and up until now (12 days post surgery) i have been having a lot of diarrhoea :poo:, but today i had my first solid one!! Yey! I hope this is a sign of things to come and my body has just adjusted. (i love how this forum is the only place i can boast happy about a solid bowel movement!! :applause:)

Suvvi! Scars are tiny tiny! #jealous lol here are my scars, now 12 days after surgery, still healing! I have one incision at bellybutton approx 2 inches and 2 tiny keyholes 1 cm. (please ignore the flab lol im one crohns person for whom keeping weight on hasn't been hard, although i have lost 1.5 stone since all this happened (7lbs in past 2 weeks)!)



Rain i’m taking a month out of my job; less so about physical recovery but also emotional recovery- the emergency nature of my surgery and the diagnosis i’ve been waiting for... It’s been a tiring year and i need the time to come to terms with it all. Hospital was horrible, the pain was horrible :( and im still very emotional about it (although i hear that can be the [wiki2="Prednisolone"]prednisolone[/wiki2])- so i’m looking after my wellbeing!

DIET- i’ve noticed everyone is on different [wiki2="Diets"]diets[/wiki2] following surgery. I was told by dietician to stick to [wiki2="Low-Residue-Diet"]low residue diet[/wiki2] until things firm up (which they have today horaah!). I’m interested in the contrast then with these low carb diets, how does that work irishtarheel!? im still on low residue but think i may start adding veg now.

sorry looonng post! its just nice to share with people who are in the same position! x
 
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Hooray for Mia! :)

Yes, there are funny things one can celebrate on this site, eh?!!! http://www.crohnsforum.com/images/smilies/thumleft.gif But, seriously, am very happy for your increasingly positive recuperation. All your info was so helpful, too, because I'll be able to refer to it if I get to that point of needing to have a stricture removed again (it's been 11 years since the first one). Your story is so encouraging.

I am tremendously grateful for the SCD diet and more recently, the low-FODMAPS plan (for my SIBO) as well. Even in their simplest form--of avoiding refined sugar, and specific carbs that are tough on the intestines (cruciverous veggies, etc.)--they can bring a lot of stability and comfort to digestion. The additional requisite of cooking (steaming) veggies is really helpful, too. I make the SCD yogurt and some homemade SCD chicken broth every two weeks, but aside from that I have found compliance is not too hard and very worth the effort. I eat out fairly often and can order what I need without issue. It's been a positive experience for me all around, but not everyone feels that way... For me, it hasn't been about elimination so much as about what I CAN have and the recipes I will make or create myself, and how good I feel as a result. I can tolerate Trader Joe's Creamy Almond Butter (w/out added sugar), and I happen to find that "to die for," and use it and almond meal in yummy recipes. Almond Butter on sliced banana is soooooooo good, haha. Perhaps it's the Almond Butter that "saved" me, haha, and pineapple, too. I'm somewhat addicted to both as a quick snack. It probably helps when there are a couple of foods that you really loveeee on your particular foodplan. You might want to consider joining the Specific Carbohydrate Diet Subforum on this site. It's so helpful and supportive. And as far as low-FODMAPS goes, if you query it on this site, or check into my former posts, you'll find some more info and links. There is more awareness of LFM's in Canada, the UK, and Australia, so that's where a preponderance of good info. comes from. So you're lucky! But here's a recent article in the US from a trusted media source, The Wall Street Journal:

http://online.wsj.com/article/SB10001424052970204554204577023880581820726.html

It's a great food plan for IBS, and for IBD patients who have had resection surgery that leaves them without an ileo-cecal valve (to hold/keep bacteria down lower in intestines). It was a few years before I developed SIBO symptoms, but everyone is different. So it makes sense to watch your sugar/carb intake even if you don't subscribe to a particular diet right away.

I wish you continued good luck, Mia! And I'm happy to help as you move forward in your food adventure! :) Take care and best to the rest of you who are coming out of this surgery as well.
 
Mia,
Good to hear you are doing well. Your incision picture looks awesome. Laproscopic is definitely the way to go. I too am finding that the loss of the IC valve has not really been that big of a change (13 days post surgery), although I am the opposite of you. I was constipated after the surgery and now have diarrhoea.

When do you plan to go back to work? I'm feeling pretty energenic, but tire quickly. I am an attorney, so I will try to start working half-days beginning tomorrow. People keep advising me to take it slowly.
 
thanks Switalski!
glad to hear the loss of the valve going ok, hope things don't go too far the other way for you with diarrhoea.
my doctor has written me a sick line from work (which gives me medical exemption) for 29 days, so that gives me a good 3 weeks before i have to go back. i expect i'll be ok by then, but i have an exam at the end of may that is being rescheduled to avoid too much demand. Maybe i'm taking the 'take it easy' advice too far :shifty: but I don't want to stress myself out and encourage any upset to my system! x
 
Just thought I'd revisit some of my old posts and have a bit of a catch-up.
It's now about 9 months since my surgery and I now seem to be in fairly good health.

I've been on Mercaptopurine since the op - and have just recently taken the slightly controversial decision to stop taking it. I have to say I've been feeling *way* better since then! But by some way of explanation...

I was initially put on Mercaptopurine to dampen down my immune system, to give the surgery site time to heal, and to try and keep me in long term remission. Initially this was fine, but as the month's rolled by, I found myself getting more and more tired - ridiculously so. Despite talking to my consultant on several occasions, I was encouraged to keep taking the tablets. Some blood tests seemed to initially provide the answer, as it turns out I am one of those people who absorb B12 in the last bit of my ileum - I.e. the bit that was removed. That's fine, as I now have three-monthly injections to top me up.

However, even with the injections, I was still exhausted the whole time. Then more blood tests showed that I was mildly anaemic - and was put on iron tablets.
That didn't really work either! Then even more tests suggested that I was low in calcium, potassium and Vitamin D! So even more supplements and tablets - including folate. What was apparent (to me at least) was that my haemoglobin count was getting lower and lower with time, but not low enough "to cause concern" according to my consultant - despite me mentioning extreme problems with tiredness. I was also taking more and more tablets to try and resolve the issue of fatigue.

It got so blinking ridiculous, with the number of tablets I was expected to take every day, and really not feeling any better, that in a fit of pique I decided to stop taking the Mercaptopurine. Since then I really have been feeling much more my old self, energy levels have bounced back, and I've even been able to exercise!

I've yet to see my Consultant and break the news - but was wondering about other's experience with post-operation medication. Am I alone here?

I am somewhat concerned that I may relapse sooner, as I am not taking the MP - but I need to have some quality of life!

Maybe I should broach the immunologic subject at the next appointment?

Tony.


HD
 
Hey, it's good to hear from you Tony and to hear you are doing well. Long may it last :) I reread your whole thead again while I was in hospital and was wondering how you were getting on.
It's very interesting and brave of you to come off the 6mp. They took me off the Aza for the surgery and after the op, the surgeon said he would refer me back to the GI who might want to put me on 6mp. I'm still waiting to see him post op.
I have to say I dont miss the Aza. I'm feeling really well and think part of it is not being on it. I like not being on anything, but like you am a bit scared. It's like walking a tightrope without a safety net!
 
Grumbletum said:
Hey, it's good to hear from you Tony and to hear you are doing well. Long may it last :) I reread your whole thead again while I was in hospital and was wondering how you were getting on.
It's very interesting and brave of you to come off the 6mp. They took me off the Aza for the surgery and after the op, the surgeon said he would refer me back to the GI who might want to put me on 6mp. I'm still waiting to see him post op.
I have to say I dont miss the Aza. I'm feeling really well and think part of it is not being on it. I like not being on anything, but like you am a bit scared. It's like walking a tightrope without a safety net!
Click to expand...

Good to hear from you too Grumbletum - glad you're safely through the surgery too! I've got really weird mixed feelings about 6MP. It certainly did what it was supposed to, but completely knocked the wind out of me also It was becoming unbearable, and having a severe impact on my life. I spent most of the day being tired at work, and sleeping a lot of the weekend just to recuperate. Sometimes I feel communicating "fatigue" and "exhaustion" to medical professionals somehow just doesn't register - "you'll get used to it" or " just try to stick with it a little longer".

But saying that, if affects different people in different ways - and a lot of this disease is just finding what works best for you! Best wishes, and here's to long term remission for all!! Tx.

HD
 
Hi there. I have read your story here and there. I am glad you are feeling better! I am about to have the same basic surgery (Dec.11). I also am wondering about meds post-op. I have not discussed it with my surgeon or GI doc as of yet. I am currently on humira, which is doing the trick in terms of keeping inflammation at bay. What I wonder is if I should stay on it afterwards, or if I will be needing to stay on it. I also wonder if the docs see biologicals as a way to prevent inflammation, but by blocking it and not reall addressing the immune response, which it seems is what drugs like 6mp are for. We'll see I guess. I kind of have a list of questions to ask the docs while they have me in hospital. I think maybe I should be more proactive. Thanks for posting. Any preop advice?
 
Adam1971 said:
Hi there. I have read your story here and there. I am glad you are feeling better! I am about to have the same basic surgery (Dec.11). I also am wondering about meds post-op. I have not discussed it with my surgeon or GI doc as of yet. I am currently on humira, which is doing the trick in terms of keeping inflammation at bay. What I wonder is if I should stay on it afterwards, or if I will be needing to stay on it. I also wonder if the docs see biologicals as a way to prevent inflammation, but by blocking it and not reall addressing the immune response, which it seems is what drugs like 6mp are for. We'll see I guess. I kind of have a list of questions to ask the docs while they have me in hospital. I think maybe I should be more proactive. Thanks for posting. Any preop advice?
Click to expand...

In terms of prep advice...just do what the doctors tell you. Especially washing yourself with the surgical soap and not drinking water. Those are the things that can get your surgery postponed.

I too was on Humira prior to surgery and my surgeon actually told me to stop about 3 weeks prior to surgery. So ask both your GI doc and your surgeon about that. The GI doc was ambivalent, but the surgeon insisted. For post-op they put me on Flagyl which is an antibiotic about 6-8 weeks afterwards. But I got a bad rash on my chest and neck from it so I discontinued that.

Then about 3 months afterwards by I still had loose still (which is normal post surgery) so the doctor put me on Colestipol which apparently treated the excess bile salts my body was producing. It worked like a charm and I feel as good as me pre-symptom days. Hope that helps! Especially check on stopping Humira prior to surgery.
 
Thanks! I asked the surgeon about stopping humira and he said I should be fine and not to stop. Strange...they are all different I guess.
 
Adam1971 said:
Hi there. I have read your story here and there. I am glad you are feeling better! I am about to have the same basic surgery (Dec.11). I also am wondering about meds post-op. I have not discussed it with my surgeon or GI doc as of yet. I am currently on humira, which is doing the trick in terms of keeping inflammation at bay. What I wonder is if I should stay on it afterwards, or if I will be needing to stay on it. I also wonder if the docs see biologicals as a way to prevent inflammation, but by blocking it and not reall addressing the immune response, which it seems is what drugs like 6mp are for. We'll see I guess. I kind of have a list of questions to ask the docs while they have me in hospital. I think maybe I should be more proactive. Thanks for posting. Any preop advice?
Click to expand...

Hi Adam,

If your medical team are saying stay on the Humira, then I would certainly do that. Ideas about the best course of action are changing all the time, and it really is done on a patient-to-patient and surgeon-to-surgeon basis. If you're not getting any side affects I would stick with the biologic. Mercaptopurine is a very crude tool - it basically affects all your white and red blood cell production - and for me personallymit just became too difficult to stick with.

Get your op over with (good luck by the way!) and deal with the meds as you recover. And yes, ask LOTS of questions!


HD
 
Hi Tony - Glad to hear you are doing well! I'm 8 months post op now and I also feel great. I am still on maintenance meds, however only Apriso. My GI wanted to start me on something mild and see how I do with it. If I show early signs of inflammation at my first scope post surgery we may try something else. I may have pushed back more if he had wanted to put me on something stronger post op, I don't know. I liked not being on anything for a few weeks post. Good luck telling your consultant and hope you continue to feel well! :)
 
Hello ! Im Natalie Ellen and im new to the forum - and I have been diagnosed with Crohn's of the terminal ileum and have laparoscopic ileocaecal resection scheduled for the 10th december ..this is a day before you (Adam1971)so it would be comforting to share progress ? I am so pleased to have found this forum as I have felt so alone and scared - but reading sucess stories such as (Leithcote) has helped my understanding of the operation .


Can I ask what foods you are eating now - 9 months after the operation? did you have to gradually introduce solids back into your diet - ?
 
Hi Ellen-

I would be happy to be a surgery pen-pal. Mine will not be laparoscopic, but thats ok with me. My surgeon is pretty awesome by all accounts.
 
Hello Adam !! Well all that means is a slightly larger scar - no biggie ! If its any help - I have a friend who was my age (19) when he was diagnosed- he dropped down to 6 stone - however since he had open surgery (like you) to remove the terminal ileum ; 4 years on - he has put on lots of muscle mass and is now very muscular weighing around 13 stone ! (from a mans perspective this muscle is a posotive outcome) and he can eat without having pain . he has had a very posotive outcome from surgery which changed his life - and i hope the same happens for us both !
How long have you lived with Crohn's for - and how old are you ? wild guess....43??
:)
 
ellen93 said:
Hello ! Im Natalie Ellen and im new to the forum - and I have been diagnosed with Crohn's of the terminal ileum and have laparoscopic ileocaecal resection scheduled for the 10th december ..this is a day before you (Adam1971)so it would be comforting to share progress ? I am so pleased to have found this forum as I have felt so alone and scared - but reading sucess stories such as (Leithcote) has helped my understanding of the operation .


Can I ask what foods you are eating now - 9 months after the operation? did you have to gradually introduce solids back into your diet - ?
Click to expand...


Hi Ellen,

I can honestly say I pretty much eat what I like. I still have some "trigger" foods, that seem to upset my tummy (giving me diarrhoea) - in my case beer and chillies are the worst, and definitely not together!

Regarding solids - I was encouraged to get back to eating normally as quickly as possible. The first few days, was mainly soup, scrambled eggs, jelly and ice-cream (well, why not if your in hospital) - but gradually back to eating anything.

Very best of luck with the operation - and wishing you a speedy recovery.

Tony.


HD
 
Ok, next chapter in this diary. One year after surgery, looks like I might be flaring - just had my fecal calprotectin levels back, which at 450 or so, is somewhat higher than the 0-50 normal range. Just made an appt with my Consultant and we'll see what he recommends. I suspect it'll be back on the mercaptopurine - which I'm keen to avoid, as it made me extremely tired, lethargic and not much fun to be around. Not sure what the UK perspective on Humira treatment is.. so will also discuss that. In a bit of a fug and grump - blinking Crohn's (!!)
 
Grumbletum said:
:hug: Oh noooooooo. Have you been having symptoms again?
Click to expand...

Sort of... some general discomfort in the "usual area", essentially now the site of surgery. But mainly feeling like I can't stay awake (!) - I'm absolutely exhausted.

Been to my GP, who's taken a vat-load of blood tests. So I should get these results at the end of the week. Then seeing my consultant next week. Fingers crossed it's all just a little blip and it calms down again.

However, not seen my calprotectin levels quite that high for a very long time. Something's up.

Thanks for the hug Grumbletum.

Tx.
 
Right... so it looks like something is definitely going on. So, I'm heading back into hospital for a small bowel MRI and a colonoscopy... oh joy ;-)

The Docs and I are also getting on top of the supplements I need to take on a daily basis - the one thing I think they kind of forget to tell you about pre-surgery. So I now take a high-dose Vitamin D supplement every day, plus iron tablets and a three-monthly injection of Vitamin B12. Saying that, still feeling *way* better than I did a year ago pre-surgery. So still absolutely worth it!
 

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