New and heading for surgery!

[Curly]

Hi, I joined today and have really enjoyed reading lots of the posts.

When I was first diagnosed with Crohn's there were no such things as forums and information was hard to come by (20 years ago). Therefore I just struggled on in my own way. It's been really good to read others experiences of the disease.

At the moment I have a bad stricture. I have pain and vomit on anything other than liquid and it can be 20 mintues after eating or up to 3 hours later. Last night I was sick after a hot chocolate. The surgeon thinks there may be two strictures, one at the bottom (established 25cm) and a new one at the top. I've lost a lot of weight and am finding it a bit of a struggle with a family and two horses to look after. I have had to stop working and being self-employed this has been hard.

It would seem that an Ileocaecal resection is the only answer. Prednisolone has done nothing to help and I can't take any other tablets as the bowel is too narrow.

I would like to know how others have coped with similar symptoms, situation and whether surgery did actually help. Also I'm very keen on diet issues and I would like to know how others made changes etc afterwards.

Glad to be here anyway. It seems like a supportive place.

 

[Guest]

hi & welcome, curly

i'm sorry to read of the problems you're having to cope with just now - i've never had strictures so i dont know what it feels like, but it sounds awful. i think if i were in your shoes, and stuck with a liquid diet only for the foreseeable future, and even then experiencing pain and vomiting - i would be really tempted to have the surgery and get rid of the strictures.

is your doctor waiting to see if the meds work or if the strictures settle, before suggesting surgery?

my own resection surgery wasnt typical, nor were the after effects, so i cant really help with that either. hmm i'm not much use, am i? lol

anyway, i'm glad you found the forum, and i hope you get to feeling better soon.

 

[Kev]

Hi Curly.. Welcome to the forum. Another UK member, think officially you out number us Canucks here now. Think you fellow UK members will have a better handle on what surgery is like over there...

As for me, I had a resection... lost 1 1/2 feet of colon. Done the old fashioned way as opposed to laproscopic surgery. Very easy operation for me.. I opted for morphine (tho epi is reportedly the better way to go) Was off it in two days.
Had the op in the morning, took my 1st walk with assistance of 2 nurses that same day.. out of the hospital in less than a week... couldn't do any lifting or anything along those lines for 6 weeks... so it will impact work (on job or at home). I managed ok with no one to help around the house... climbing stairs was a bit of a challenge... worst was coughing, laughing or 'dreaded' sneeze. I had a great time during my recuperation.. so much so I thought I was cured. I wasn't.. won't go into that here. However, I was referred to a very good IBD nutritionist... following her advice, my symptoms remained in check for nearly 6 months.. I wholeheartedly support following diet, med, exercise, supplement & rest regimen.. It's not a cure... but I believe that it helps; whether short-term reactions actually show improvement. i still follow the above, even tho just the diet/regimen STOPPED working; and I had to adopt more serious medications to my program. Anyway, enuff about me. Another member just went through a resection.. Freddo is his name. He is posting his experiences in another part of the forum. Freddo didn't have the cakewalk that I did, but everyone is just a little different, AND I think part of his problems stemmed from pred (or another form of immuno suppressor). Think it's well worth your while to read his posts.

Anyway, welcome. All the best. Don't forget where you found us, and keep us posted on how you make out, OK

 

[Curly]

Hi,

Dingbat - the Con Gastro and Surgeon both feel that surgery is the way to go now, but won't do it without a 'roadmap' (thankfully) of the area to be removed. What's holding things up is getting the tests done. Had barium last week and have colonoscopy booked for this Thursday. My con is actually doing the colon'py himself so I'll be able to catch up with him then. Following that I hope they get me in quick. It is nice to hear from people even if it isn't the same for them. Lets face it, nobody has exactly the same experience, even if they have the very same things going on. Just nice to get support and hope I can offer some back too!

Kev - thanks for that, sounds like you've had a bad time over the years. I count myself pretty lucky really that I have had it for so long and managed on the whole with diet, supplements and changing my lifestyle. Now live in the country and work for myself part-time and have horses which are great for keeping you going! Like children you still have to look after them even when ill so I have a get on with it approach to life.
It sounds like you were up very quickly after the op and with open surgery too. I think I'll be a wimp! They have said they will attempt laparascopic first but I am worried that the new bit is very close to the stomach opening. Hopefully find out this week. Apparently the surgeon is a professor of surgery and is flown over to Scandanavian countries to do complicated crohn's surgery, so comes highly recommended!!

In the meantime, strained soup anyone??

 

[SumCiA]

Hi Curly, i recently had an Ileocaecal resection myself for a couple of strictures (3 weeks ago now). They were next to each other so my surgeon removed the whole section as if they were one. The length removed was about 8 inches.

I was given Prednisone and two different antibiotics at first while i went through all the usual tests and although they seemed to calm the pain of the stricture considerably the tests showed my stricture was pretty bad and i needed surgery as soon as possible. The surgery itself was pretty straight forward, i couldn't have it done laproscopically because the inflammation of the diseased part of the bowel
was too much and it would be difficult for the surgeon to remove/resect etc.

I think post surgery pain/comfort is all down to the individual. You get someone like Kev who had very few problems and on the other end of the scale you get someone like me who had a few complications. It's probably luck of the draw. Unfortunately my wound became infected after about a week and i had to return to hospital to have it drained and medicated. I now have a semi-open wound that i have to keep an eye on.

I had quite alot of pain post surgery that didn't react to pain meds. Thinking back it must have been the infection. Also i was still on prednisone post surgery which masked any symptoms of the infection. I would urge anyone going into surgery to make sure they are off the pred well before going in unless you have to keep taking it like i did.

Anyway, i am at home now getting better day by day. If it wasn't for the infected wound i think i would be considerably better by now. I don't eat alot yet but being able to eat anything remotely 'anti-crohns' and not having to worry about the stricture is a huge relief.

The hospital i had mine done in is a world renowned Crohns center of excellence in London. It was a relief knowing that the person doing the surgery had probably done hundreds of exactly the same procedure as what i was about to have.

I would have to say that surgery was probably the best thing that could have happened for me personally. I don't really care that my scar will eventually heal into what will probably look like a shotgun wound or that the drained abscess under the infected part of the wound has created a valley shape in my belly contour. It's nothing a bit of plastic surgery can't fix in the future, right?? lol.

Take care.

 

[Curly]

Freddo, you really sound like you've been through it lately. It's really good of you to post on the forum your experiences and it certainly helps me to read it all.

I'm really sorry that you have had such trouble post surgery. I guess there's not a lot you can do if you get an infection. Like you I think I have two stricutures at the moment. Unlike you I think their far apart i.e. one at the bottom of the ileum and the other at the top. So what the surgeon will do I don't know. I have read that you need a good amount for the ileum to keep functioning ok.

Like you I don't think I have any choice now either. I've avoided surgery for nearly 20 years and have concentrated on diet to keep well but now's the time.
I was given Prednisolone to see if it would reduce the inflammation when I first flared up. The GP gave me 30 mg for a week and then the Gastro con put it up to 40mg for another two weeks. I'm now reducing and at 25 mg. Like you say, it's better to be off it, but I'm hoping they'll get me in for surgery in the next couple of weeks. How much were you taking when you had the surgery?

I hope you continue to do well. Take each day at a time and let me know how you're getting on. We crohnies need to stick together!

 

[SumCiA]

Curly, i was taking 20mg of Prednisone a day for a week after surgery. Upon discharge from the hospital (the first time round) i was told to stop taking them. By this time it was too late however and the negative effects had already masked the infection.

Like you, when i was diagnosed i wanted to read as many real personal accounts of crohns surgery as i could. That's the reason i keep my story up to date. Some people may not need to read it because hopefully they will never have to go the surgery route but it is good to know that sufferers like you can gather as much information as possible from us veterans lol.

One day at a time. That's what everyone keeps telling me, and it seems to be 100% appropriate. I do feel better every day even if it's just a tiny improvement. My main concern at the moment is the wound healing itself. I am going to ask fellow crohnies in a separate post about this probably later today.

I will update you on my recovery. Let us know how you get on too.

 

[Crohn's in LA]

Curly, I think the surgery was the best thing I had done.

Diagnosed in 1987 as a 9 year old. I had dealt with the pain and meds for 6 years until I had the surgery. 1993 was the first. I felt incredible. After six years it was the best I had ever felt, or atleast since I was 8 yrs old. I had more complications a little over a year later. I had another surgery in 1995. Again felt great afterwards. 1995 - 2001 was my longest period of relief. I thought I had concurred things. I later had a third surgery in 2003. I started feeling ill again in 2006 or so. Until now I'm just sort of on and off. I had been taking 6mp since 1995.

I have been feeling pretty bad lately. My doc says we are going to try HUMIRA. If it doesn't do the trick then we may look for yet a fourth surgery.

My crohn's tends to stay away for a while. When it's back IT'S BACK! Then it goes.

My best friend has Crohn's. Funny we became friends before I found about his Crohn's.

He had one surgery and wondered why he didn't do it sooner.

I believe that you will get all the relief you need, and hopefully it will stay away for a long time if not forever.

I would go with surgery, if your doc has done all he/she could to get results through medication, or if your stricture is just too bad.

 

[Keara07]

Hi Curly - Welcome!

I just am home two days after my emerg resection - if you can get to a planned one, it would be better. I ironoically was on here asking very similar questions but things changed for me quick and I was rushed in, stabalized (took 5 days) and had the surgery, removing 8-10 inches of a solid blocked small intestine which had collapsed,folded over, attached to my uterus and well, eeyew.

Anyhew, recovery isn't a cake walk but it's manageable. Going slow, having support is all good. I also asked the nurses to let me manoever at my will and after they tried to move me once they let me go on my own and I guess I knew what worked best (two c section memories guided me on that one).

I was on prednisone as well - since January - 50 then 40 and was tapering to 30 when I was rushed in. At the hospital I was on IV only so a sister steroid for the 2 weeks in equivalent tp 50 mg pred so now home, I am on a very slow taper, 5 mg a week starting at 45 of the pred but ther is no way to get around it. The hope is of course no symptom return with the bad piece eliminated as the taper progresses and the wound (10 inch ab scar - lost my belly button even) looks aok. I have three incisions - the outer one, inner ab wall and then the resection area itself, but I feel blessed that was it, and I'm home, and healing.

And I have high hopes for a remission stage as well for awhile....long term if but I also know that I am the best guide of CD and when I get tap on the shoulder, "hey, I'm back,,,," to see a doc get on the bandwagon but I don't want to focus on that, and am not. I plan to be lined up with a nutritionist for sure, and of course reg check ins with my GI for a bit and then the GPO or whatever the local protocal is. I was only dx'd on Dec 29th 07 (symptoms long before - hindsighgt 20-20) so this has been a mad rush.

I hope you are feeling better and I wish you great health and happiness!

 

[elp888]

surgery

hi curly,

i'm also new on the forum and it seems like a good place. i've already gotten lots of information and nice responses to questions that i posted...

i'll be having surgery (stricture, fistula and abcess) in about 5 weeks time.
this will be my second time. the first time was about 12 years ago and after that my Crohns was in remission until this december, so in my experience it was a very good thing. so, now i'm hoping this time i'll also be so lucky!

good luck with everything!
e.

 

[michels1]

Hi Curly, I too am new here. I had my resection in November for stritures in my small intestines as well as in my bile ducts caused from pancreatitis. I had 3 1/2 feet removed along with part of my liver and pancreas and entire biliary tree. My liver and pancreas have been reattached directly into remaining intestines. This has been a very long recovery but I am so glad I had it done. The pain that I had before my surgery is gone, I just still have minor anatomy changes to deal with. Everyone is different with recovery. I had been on morphine for so long that I sort of built up an immunity to it, so my pain was not controlled too well at first. I also had to have my incision re-opened 4 days post op due to infection. I spent 17 days in hospital and unfortunately was readmitted 3 times during 2 month post op time frame. If I had to do it all over again I would. I know that I am not cured completely but to not suffer from pain 24 hours a day is a bonus. Good Luck..

 

[Curly]

thanks everyone

I'm back at home now. Had op on last Sun and came out on TUesday. I feel pretty lucky really. They took about 2 ft of bowel away with a right sided hemecolectomy. I had it part laparoscopically removed which means I have two small incisions and 1 at 6.5 cm which is good. I can eat and drink soft foods now and am loving the taste of food! I did write up an account of the op etc and thought I'd posted it on general ibd but I can't find it and don't have the strength today to type it up again. Mainly I'm a bit weak and tired but don;t have a lot of pain more tightness, so am really pleased. The surgeon said he couldn't believe I had managed to get anything through it at all. Then said "eat now, it;s in the bucket". He'd have had me out of bed the same day if I hadn't been off my head on morphine!

I seem to have a lot of diarrhoea, not sure how normal this is, but I suspect so.

Thanks to everyone for giving me their story, it really helps to know how others have felt and dealt with it.

Good luck to everyone going through the same thing. Off for a rest!

 

[Guest]

hey welcome back curly i'm really pleased to read that not only have you had the problem sorted and on are your way back up now, but also that it went so smoothly! you were certainly out of hospital quickly. well done

i would imagine the diarrhea is pretty normal, and would think this will settle in time, especially once your diet is more varied. hope your recovery goes well.

 

[Curly]

Thanks DB have had another decent day. Crisps are back on the menu!!!!!!!!

I am planning to be super healthy with diet at some point but for now am enjoying whatever goes down ok!

 

[Guest]

woohoo - you got crisps back i agree, just enjoy eating and feeling good for a while, before embarking on the healthy eating plan - you deserve it!

 

[Curly]

It all caught up with me!

Sadly, the plan of eating what I wanted i.e. crisps and chocolate biscuits (well perhaps as many as I eat) didn't work for long! I had terrible wind pains last night and went to bed feeling like a balloon! So healthy eating has started today with soaked oats and banana for breakfast, moist roast chicken with carrots for lunch and a vegetable casserole for dinner tonight. That's the plan anyway!

 

[Guest]

lol, well you've had a little fun with the crisps & chocolate... sounds like your body has just given you a rollocking

hope your tum settles down soon.