Surgery Question

My current state is i'm on the full dose (150mg) of aza each day and before this was on pred which did wonders (obviously with its own drawbacks-but it felt great to be normal for a while).

About 8 weeks ago i discussed a possible SB resection but i felt fine at the time and i'm trying to stay well clear of the operating table! The bit that was disscussed was a length at the very end of the SB which included the ileocecal valve. I was told that it could loosen things up a bit and i could have D for maybe 6 weeks after.

It is only now that the growling gurgling noises are gradually increasing (as well as the weird feeling with it) and the old cramp pains etc seem to be creeping back, I'm starting to realise that maybe i won't be able to avoid the surgeon for as long as i'd hoped.

It is this therefore that is causing me some concern and I wish i'd have asked at the time, i have never suffered from D with Crohns thankfully and i'm worried that the removal of this ileocecal valve would 'loosen things up' permanently. And if its a choice between the pain i lived with for years and the unknown then maybe better the devil you know as the saying goes.

Anyone who has had this section removed or knows anything about this please let me know

Thanks Guys

Hi there, welcome if I haven't welcomed you! I have had a resection twice, 2ft of the Ileum only. Yes you could get D but there is questran to help you get through a period time. Once in awhile I do get D but for the most part, loose bms, but that is to be expected. I am now possible heading for a 3rd surgery, and like you I want to avoid it but being infected is a huge mistake if you have elective surgery. That was my mistake on my second resection and never got a break in 7 years or more. I know it is better to deal with the devil you know, but maybe you could be spared many many years of no pain. :hang: decisions are hard, I know. Just want some relief, nothing wrong with that. Meds sooner or later either peter out or cause other problems... like we need more.

Hey there Pen, yeah you welcomed me before! lol. The surgeon had said it would probably be done by keyhole surgery and that after 2 days if things went well i'd be home and i'd be eating normal food the next day which i thought was different to the liquid diets for days or weeks i read about.

The infection thing does bother me, especially as being on the immunosppressant, how will my defences cope if i get something whilst in the hospital. I'm just about to start my final year at uni and after that then will be trying to somehow get a job in possibly the worst recession hit sector in this country, so the operation and recovery time is the last thing i want nevermind all of a sudden possibly having to rush to the toilet multiple times a day.

Thanks for your post, and i hope you pull back from the brink of the 3rd surgery

Roo had a Right Hemicolectomy 4 years ago which involves removal of the ileocaecal valve. In all she had about 60cm of bowel removed and she has been left with short bowel syndrome. She normally has her bowels open about 5-6 times a day. Questran would help with this but she found it too unpalatable so plans her eating around her day and this seems to be working very well for her. As the years have gone on she has become increasingly in tune to her body and I have noticed that her eating patterns have relaxed significantly. The syndrome is directly related to when she eats so there is no unexpected rushing to the toilet as such.

Bear in mind that this is just Roo's outcome from surgery and hers was not planned, it was an emergency that required a large amount of bowel to be removed. As far as post op diet is concerned she started out slowly with small meals, but was able to eat normally from the outset.

Dusty.

I haven't had that surgery, but I have had a colostomy. The only thing I can tell you is to keep positive. I had some complications with my surgery - I developed blood clots in my lungs and then my PICC line got infected (both easily avoided problems if you know you're going in for surgery ahead of time...mine was an emergency). If worse comes to worse, you get to be on good drugs for a while....lol

I suppose what it comes down to is what you want to live with. Do you want to take the chance and possibly live a pain free life in remission, or as you said continue with the devil you know? It's a hard choice...and had I had the choice to have my surgery or not, I likely would have said no. As it turns out, it's been the best thing that's happened to me in a very long time.

Sorry this hasn't been more helpful...good luck to you in whatever choice you make

I don't have my ileum and ileocecal valve and I have one bowel movement a day totally solid and I don't run to the toilette at all unless I eat something bad. Don't be worried about that, getting the surgery had an AMAZING impact on me for the good. Message me if you have any questions for I had the same surgery that you're going to have.

I lost 26" about 1/2 was small bowel and half colon. I do have diarrhea nearly every day. If I eat certain things, I cannot make it to the bathroom in time. BUT let me say this. They first went in laprascopically. I was not having pain and was having regular BMs before surgery. But the 'mass' kept getting bigger. They expected a quick, easy surgery to remove my 4-5" affected area. I had so much scar tissue they had to remove 26". I have asked my doc over and over was he sure it was the right thing to do. He says yes. It would've just gotten worse and I may have lost more the longer I waited. It now makes me wish I had surgery years ago and just had the small affected portion removed and gone on. So that's a different perspective on waiting... Good luck and hope you and your doc are able to make the right decisions for YOUR case. Everyone is sooooo different. I am now completely pain free with no other symptoms except the bothersome BM issues at times.

Thanks everyone for your comments - you've no idea how much i appreciate hearing the views of people (or Mothers of! lol) people who are affected by the disease.

4 stories of surgery and no hint of regret - maybe a sign?

Another, maybe silly question here... say i have the resection and have diarrohea, will stuff like the Questran that Dusty mentioned be a long term thing and how effective do people find it - does it make them 'normal' or just slightly less frequent? I know everyone is different but i want to just hear experiences.

Even forgetting my situation for the next 12 months, I'm going into wa line of work were its not all day in an office so it makes me more concerned about not being able to keep control of things down there.

What also scares me is at 22 having this op with the large percentage of people who have surgery then needing more at a later date, if i am struggling to go now, how would i feel going in again.

Finally of any you who have had this op, did you find your never ending fatigue and/or joint pains finally starting to ease?

Same thing I had done, and I have no regrets either. Given that I could not longer eat, it seemed like the right thing to do. They took a stricture out that amounted to a two inch section of small bowel.

The worst part was that they would not let me out of the hospital soon enough. It is very boring in the hospital, and I am a fairly active person. Oh, I also forgot about the catheter. I woke up with that. I was not too thrilled about that part either.

I am in no rush to have another surgical procedure, and hopefully I will not have to, but I am glad I had the last one.

Dan

I've been told mine is eight inches though from reading Doris' post i've realised that doesn't necessarily mean eight inches.

Hadn't actually thought about the catheter... squirming even thinking about that lol. Can i ask- do you actually feel it while its in?

Hi Liverpool FC (excellent choice of team by the way!)

After 4 years being flare up free and being very healthy, this summer brought with it a severe flare up which left me in hospital and almost incapable of leaving the house.

At the beginning of the flare up my doctor suggested bowel resection surgery which I was completely oppsed to. However, after 6 weeks of constant pain, nausea and fatigue I was almost begging for the surgery!

It's been 2 weeks since I had the surgery and I am now pain free (although still weak from the operation.) The operation went well and I'm glad I didn't wait any longer for fear of having to have emergency surgery which could lead to complications.

The bad points are the morphine drip didn't seem to touch the pain which was quite bad for the first day. Also, they fill your abdomen with carbon dioxide (I had it laproscopically) which left my bloated and in agony for 3 days as I was full of gas and couldn't get rid of it. The nurses were unsympathetic which annoyed me but in my ward (which was specifically for bowel surgery patients) I was the only one with this problem.
My bowel movements were the only normal thing about my CD before the surgery but now I can't seem to even smell food without having to run to the toilet but i'm told this won't last for long.

However, the good points definately outweight the bad ones. I have been abdominal pain free and although I am still weak, I am nowhere near as fatigued as I was pre-surgery. Altogether, my quality of life has been drastically improved the past 2 weeks and I'm still recovering.

Having the surgery has been the perfect decision for me and with doctors now, you can be in and out of hospital in a matter of days and eating normally the day after surgery.

I hope this helps, and good luck with your decision.

I'm sorry but I have to say this buuuuuuuut the catheter was the hardest and most painfullest part of the surgery at least for me. Don't worry though you'll have that out while you're still on the Dilauded or Morphine pump so just don't be shy to use that to your advantage a lot!

Hi Liverpool FC, i too have been advised to have a sb resection (also NI) and really joined this forum to try and get some advice as i was totally undecided about surgery. Have you had your surgery yet? my dilemma is that i feel great at the mo and i'm really concerned about the diarrhea as they intend to remove the iliocecal valve. I have decided to go ahead with the surgery and am currently waiting for a date and until then i'm trying to get as much info as possible. thanks for any advice.

Hi Archie - nice to 'meet' someone else from NI! I haven't had the surgery yet, though as each day passes (not every day) i know i'm returning to my old self with the pain, rumbles, wind and almost being sick with excess saliva-think thats down to a partial blockage.

Are you a member of NACC? They are having a meet up this Wednesday evening, I've never been before and am going simply to hear the speaker and hopefully get the opportunity to ask people about this type of op myself, if you want the details of the venue etc send me a private message and i'll forward you the info.

I have to say you are braver than me, I am only letting the thought of surgery enter my head because i don't feel well, otherwise i would be too scared!!!

Keep me informed if you get a date for it etc.

Don't fret Liverpool. I had to have a sb resection a little over a year ago. I had D for about two weeks or so after the operation, but it soon returned to normal. Never had D to begin with in the first place. Just have to remember that your bowels are in a relearning phase after your illio valve has been removed and it takes a little time. As for the fear of working in a field that is not in the office 9-5, I work as a police officer on the midnight shift in a large city. It is hard to be more active than that. I still can run after folks, jump fences, kick butt, get my butt kicked, etc... I wouldnt worry about that. I just hope it gives you several years of remission as I only had three months before I flared again. But I have a very severe case according to the docs. But I still battle on...

thanks for the advice tpd 320, thats my biggest concern re: the D as I also have a physical job and am very active. I'm just waiting for the sb resection and hope it doesn't have me off my feet too long especially coming up to christmas.

I had a semicolectomy last year, they removed 45cm of my bowel 35cm small bowel and 10cm large. I regret it every day.Before my first, major and aggressive flare,I had no symptoms whatsoever. Now I am in constant pain and have 5-7 BMs a day always D and I cannot eat anything but rice meat pasta and bread. They also removed my valve. Maybe it was the emergency of the surgery, I was adimitted for sppendicites (sp?) but the doctor who was trying to find my appendix gave me a bowel abruption. I had a mojor flare a year later (this August) which I am still fighting (starting Humira), I constantly have low potassium low red cell count, palpitations (from low potassium) and because I am overweight and loosing weight everyone keeps saying how good I look. I cannot stop thinking what would be the outcome if the crackerjack surgeon had done at least an ultrasound before starting the operation. The mass was so HUGE they first thought I had lymphoma, they could probably even see it in a regular X-ray but nope, in Greece if you can cut you cut. The first surgery did not improve my life AT. ALL, plus the doctors did not finish the job correctly and it looks like I will need another surgery in a year or so.

For the first surgery I stayed in ICU for 6 days and then at the hospital for a month. I ate solid food two months after the surgery and I have a scar which starts under my ribs and finishes in my pubic bone (HUGE)

So yes I regret the surgery everyday, I cannot stop thinking all the "what ifs"

Like Scifimom, I have previously regretted my surgery because of the constant D and all. However, the scar tissue that caused me to have so much removed was most likely from an old rupture that went unattended. I used to have extreme pain, fever, etc. before my diagnosis and after 12 years more scar tissue had built on the outside of the affected area. I went off my Lialda about two weeks ago due to cost and just this past weekend, I felt a flare/stricture coming on. I then thought I will NEVER fuss about diarrhea again. I will take the diarrhea over the pain and discomfort ANY day.

Also, the diarrhea is somewhat controllable. I take an Immodium AD each morning with my meds. I add another if I am going out to lunch with friends. It does not stop the diarrhea, but I know when it is coming on and have plenty of time to find a restroom. You can take 6-8 Immodiums a day because it only affects the gut (is not absorbed I've been told). One thing about it is the BMs are quick and painless. You empty your gut very quickly and move on. It is not very time consuming. I can also take the Welchol (4-6) a day to slow things down, but it causes gas so only I use that when I know I am not going to have a restroom all day and it works for me as a great fix for up to 2-3 days. I then find I need to back off and let "the pressure off" my system.

Everyone is different, but I'll take D over pain any day.