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HELP - surgery could be tonight,tomorrow, even next week...we're just waiting

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Crohn's Disease
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Posted 5/24/2013 6:02 AM (GMT 0)
Hi everyone,

I am here bc im scared and this forum has taught, guided me, reassured me and made me feel 'a part of' during my whole Crohn's journey.  I need some help tonight please. My Crohn's is getting really bad... here's the background.  I was diagnosed 2yrs ago and my TI was so inflammed it was barely obstucted and 2/3 of my colon was collapsed.  I tried Entocourt (didn't work), Prednisone (allergic reaction, weird i know) and finally Humira and Imuran.  Taking the immunosupps put me into remission for just about 1 year.  January this year while taking Humira, the whole ride side of my body went numb within 1 month.  I went to neuro and both him and GI say it's PML (progressive multifocal leukoencephalopathy) brought on by Humira.  Lucky I caught it within 1 month and stopped Humira right away.  If I would have taken it another 3 months, the PML would have killed me by Christmastime.  ((google it, this is very scary and if you are taking immunosupps you should educate yourself on this!!!!!!!))) Anywho, Ive been off all meds for Crohn's for 3 months and I've been getting worse by the day.  My GI has scheduled an MRI for June 3 and then I'll meet surgeon to do surgery.  I cannot take the pain anymore (my CRP which levels of inflammation in body is 224 - it should be less than 5) and aside from 15-20 bathroom trips, not eating solid food etc. I have now started profusely bleeding from my rectum as of tonight.  I called the GI on call at the hospital, he said it is more than likely coming from my colon from inflammation and if it does not subside in 48hrs to come to hosp and they will admit me and more than likely do surgery now and not in a couple months.  But he said if it gets worse (pain or bleeding) even tonight to come asap as he doubts this will get better.  I am so scared and do not know what to expect... would it be a colostomy or ileostomy? What is it like? I heard its better to ask for a longer peice sticking out so you get a better seal? What is recovery like? Any tips would be so so so appreciated as I am a mess and do not know what to expect.... Can you specify a certain placement? Thank you so much for reading and any advise you have to offer....

Posted 5/24/2013 7:30 AM (GMT 0)
I am new to this, so I have no advice, just prayers.
Posted 5/24/2013 12:50 PM (GMT 0)
Hi Carrie,
I'm so sorry you are so sick, but it does sound like surgery is your only option. Try posting your same note on the ostomy board...they may be better able to answer your questions. I'll be thinking of you....post and let us know how you are doing.
Posted 5/24/2013 1:17 PM (GMT 0)
Sorry you're going through all this.

Whether it's an ileostomy or colostomy depends on which part of the colon is removed. If the entire colon is removed, it'll be an ileostomy or, possibly, an ileorectal anastomosis (joining of the ileum to the rectum). However, the latter would only happen if your rectum was okay, which it doesn't sound like it is.

If just part of the colon is removed, you might have a colostomy or a reconnection. It depends on which side is removed, really. If it's the right side (right hemicolectomy), you'll be reconnected, but if the left side is removed, including the rectum, you'll have a colostomy.

You heard right about it being better to have a long 'spout' with an ileostomy. If you get a chance to speak to the surgeon beforehand, make it clear that you do want a proper spout. about an inch long. Retracted, or flush, stomas are so much more prone to leaking than ones which stick out. Also, you can specify a certain placement. It is best to get a stoma nurse to help you with this - most hospitals have one.

Recovery depends on so many different factors, really. Whether it was open or laparoscopic surgery; elective or emergency; your state of health at the time of surgery; meds you are on; and so on and so forth. However, if I have to give just one tip it is this: get off the strong pain meds ASAP. It's better to be in a certain amount of pain than to develop a physical dependency on opoids: trust me on this one.

Also, all being well, you can expect to be in hospital for a week after surgery.

With any luck, if you do end up with a stoma, it will be a temporary rather than permanent one. Sometimes a temporary stoma is set up to divert faeces away from the diseased part and hopefully enable it to heal. It depends on the extent of the disease, among other things. To be honest, I'm not crystal clear on the differences between temporary and permanent stomas. I had a permanent stoma, presumably because my entire colon was affected and it would have been too much to bypass.

Anyway, best of luck! It's horrible now, but hopefully after surgery you'll feel better.
Posted 5/24/2013 3:28 PM (GMT 0)
Thank you so so so much everyone!
Nice Cup of Tea - I truly appreciate allll of your advise! Am I correct in remembering seeing a post from you that you went for surgery a couple months ago? I totally agree with you on the pain meds - I've been taking Oxy (6 pills a day, 5mg) for the longest time and it scares me. I dont get 'high' from them and at this point they dont even help :( Does anyone have any advise to explain this to my 4yr old? She is such a loving, smart little girl and I don't want to scare her into thinking this is a bad thing or that hospitals are bad (I work at the hospital too). As an update the bleeding is still there, but I am trying to make it as long as possible, hopefully thru the weekend at least. So I will remember to ask to see surgeon first to speak with him regarding length of spout and also the ostomy nurse about location. Can you sleep on the bag once you've healed (ex. right side, left side)? Do they usually put it above your waist or below? Does one smell more than the other (colostomy vs ileostomy?) Does the actual stoma hurt at first (after healing) if your clothes were to brush against it? Thank you all again - this place feels like a big group of friends who come from all walks of life, in all parts of the world who all have a similar connection...love it!
Posted 5/24/2013 7:02 PM (GMT 0)
You are correct, only it was 3 months ago now <_<. I had a subtotal colectomy with end ileostomy. And since I just mentioned that, I might as well explain there are two types of ileostomy: end and loop. End is where the ileum is brought to your stomach, made into a stoma, and that's it: it stops there. Loop is is where a loop of small bowel is brought to your stomach, made into a stoma, but the small bowel carrries on and is either connected to whatever remains of your colon or is made into an internal pouch. An end ileostomy only has one exit but a loop has two exits: the 'upstream' one is for faeces and the 'downstream' one for mucus. Finally, end ileostomies tend to be permanent but can be temporary, whereas loop ileostomies are always temporary.

Phew >_>

If you've been on Oxy for a long time, I would seek help from a doctor to taper off. After the surgery, obviously. If you think it's going to be difficult, try to see a pain management doc: they should be more knowledgeable. There is a drug called Suboxone which makes tapering off narcotics much easier, although apparently it can be addictive in its own right. Worth asking about at any rate.

I don't know how to explain it to a young child, I'm afraid :-/

For the first two months, it hurt too much to sleep on any part of the stoma whatsoever. But while I still would not put my full weight on the stoma, I can lie at least partly on it/the bag without any issues. It doesn't hurt anymore.

Colostomy output apparently smells more like normal faeces do. Ileostomy output ranges from being almost odourless to foul - various foods influence the smell far more strongly, eg fish, eggs, etc. That said, the bag does contain the odour pretty well, so there is no smell until you open it to empty it.

The stoma will be sore and swollen at first, but clothes lying loosely against it won't be painful. I wouldn't wear tight trousers for a while. Oh yeah, the stoma tends to be under the waistband, but I suppose it depends on how high your trousers are: for jeans with very low waists the stoma will probably be above the waistband.

Phew... *collapses* >_>
Posted 5/25/2013 1:08 AM (GMT 0)
Hope they get things figured out for you soon! Unfortunately if we don't try things like the drugs that suppress our immune system we also end up in this position by not treating the Crohn's. I think our risks of surgery and all the complications of untreated Crohn's are probably higher then the medication risks. But it's good to know the signs of these things to keep an eye out for.
Posted 5/25/2013 5:21 AM (GMT 0)
Thank you so much Nice Cup of Tea and Jen77!
NCOT - I really appreciate all the tips and advice! I was trying to figure out if they place the stoma at the bottom area of your ribs or more of at your hip bones... i guess it all depends? I agree with you about the Oxy - I know the dose could be a lot higher, but I will (and want to!!) taper off as soon as possible! I am so sick of taking any sort of medication these days just to function (I guess that's alot to ask for with someone who has Crohn's haha) but you know what I mean right? Sometimes you just want to be'normal' and healthy again. Although, I must remember I have so much to be thankful for and it could be far worse for me. Thank you for addressing the smell concerns - I was wondering if one was worse than the other ;) Goodnight!
Posted 5/25/2013 1:23 PM (GMT 0)
@Jen - Depends on the severity of the Crohn's, really, but yes some people will end up needing surgery if they don't take any measures to control their Crohn's. It's long-term inflammation which does all the damage, so if you don't get that under control, you probably will end up with complications such as obstructions or fistulas, or whatever. I just wish I'd known this ten years ago. I would not have been so blasé about living with Crohn's if I had known my eventual fate was going to be a permanent stoma.

@Carrie - You're welcome :p ...Nah, the stoma will never be placed as high up as the bottom of your ribs. It's rarely placed higher than the belly button in fact. And, if an ileostomy, usually on the right hand side of your body. When siting the stoma, the stoma nurse will try to avoid putting it anywhere where the wafer will interfere with the natural creases of your body: so not too close to the groin for example. Mine is about two inches to the right of, and an inch below, the belly button. I could have had it up to an inch higher, but I decided lower would be better for me. I don't regret that decision.

One advantage of surgery is that you should be able to come off all the toxic meds! (Including Oxy.) It depends on whether you decide to go on a maintenance med after surgery or not. My GI wanted me to go on 6MP, but I declined, saying that all the Crohn's meds had made me worse, not better. He said that the meds shouldn't have that effect now. He's probably right, but I'm sick of giving my immune system a bashing. My haemoglobin is finally in the normal range after years and I want to keep it there.

That said, I'm gonna insist on monitoring my disease much more closely than in the past. If the inflammation shows signs of having returned, I suppose I'll have to go on something again :-/

Anyway, goodnight. Or, rather, good afternoon :p
Posted 5/27/2013 8:59 PM (GMT 0)
Please don't be scared I was in almost the exact same situation I had the surgery 4 yrs now I have a full ileostomy I had all of my large intestines along with my rectum removed it left me with my ilium I have to say the recovery time wasnt easy because I had 97 staples starting from my pupic bone up to the bottom of my rib cage but it saved my life it did get some getting used to but once you get the hang of it life is normal or as much as it can be you won't ever have to search for bathrooms you can go on trips and even allow someone else to drive lol back to recovery there is some discomfort involved because they cut through your muscles but it isn't that bad but forget sneezing and coughing lol as for the bag? It really isn't bad you just have to play around with products until you find what works best for you not what the dr says what fits you the best I am a female and I wear a bathing suit I go swimming I wear dresses form fitting clothes and I'm not embarrassed the only bad part of having a bag is the smell when you empty it's horrible and I mean horrible but it beats the other option
Keep us informed I would like to know how you progress
Posted 5/28/2013 2:47 AM (GMT 0)
just discharged this afternoon, delivered big bouncing resection complete with appendix. I had to through the dice, pain has been an unwanted best friend for over 2 years. Since there were no further updates I'm guessing your in now or waiting still. I did the tests and surgery was the only option. Laperscopic was selected so I have hole and I also have a vertical incision around belly button. taking some kind of oxy now for post surgical pain. most comfort was found putting a soft pillow on my belly and sheets and blankets over that. But the bright side was all the Crohn's pain is gone now to have the rest settle down.

Make a decision and stick to it. have a little faith in you doc. A settled mind can cope with uncertainties easier.

T
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