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Hi,

 Reply posted for Marie 053.

 Hi all!  Here's an update---

HOORAY!  My surgery is over---it was on 7/30.  The surgeon removed my IC valve and about 6-8" or so of my terminal ileum.  I had a laparascopy-assisted surgery, so only have 2 tiny incisions and then 1 larger (2-2 1/2") one above my naval.

Immediate post-op was absolutely miserable (nearly intolerable) for me.  I happen to be one of those that ALWAYS has nausea and vomiting after surgeries---must be either from the anesthesia or the narcotic pain meds, OR a combo of both.  So, for the first NINETEEN HOURS I had severe nausea, dry heaving, and finally vomiting.  The abdominal pain from dry heaving was some of the worst pain I've ever experienced.

The GOOD news is that once the N&V was under control, I made rapid progress and was only in the hospital 3 days & went home on the 4th day!  I have reduced my pain meds, and am making some progress daily.  I see the surgeon for a follow-up visit on 8/17. 

I'll be contacting my GI doc in a week or so to find out when he wants me to go back on Humira.  Since it's quite common for Crohn's to recur, my GI said it's important to stay on medication to hopefully slow down the process.

Have any of you experience that horrible nausea & vomiting post-op?  Any suggestions?

 Reply posted for Marie 053.

Yes, I did need help getting up from bed, the couch, chair, etc. My husband suffers from bad knee pain therefore, it was difficult for him to assist.  Actually, it was rather funny and difficult for the two of us trying to move; therefore, we opted to minimize movement.  I found that when lying down, pillows were helpful and I would roll vesus sitting up as that hurts to much after surgery.  Hope all is well.

 Reply posted for Lynnek.

Hi Lynne, CrohnsinOH, and all,

So sorry to hear about your recent bowel obstruction, Lynne, and that you'll be needing surgery again soon!  I agree with you wholeheartedly that if the narrowing is that severe, it's best to not put off having surgery.  If one ends up with a complete bowel obstruction or a perforated bowel, the outcome can end up a whole lot different---such as serious infection; having to have a bag etc.

MY UPDATE---Since my original posting on May 20, I had a barium small bowel follow-through in June.  It also showed that I have increased stricturing in my terminal ileum.  That sealed the deal for me---no more putting off surgery!!  I met with a surgeon and have scheduled my surgery (small bowel resection) for July 30.  I'm still nervous about it, but just the same I'm relieved that I've made the decision and have it scheduled. 

My surgeon said that he plans on doing laparoscopy with small incisions, and then a little larger one near the navel.  Lynne---not sure, but maybe the reason you continue to have "open surgery" is that since the previous ones were "open", it may need to continue to have to be done that way.  My surgeon did make a qualifying statement, however, that IF when he's doing the surgery he finds lots more problems in there than anticipated, then it would possibly need to be converted to an "open surgery".

CrohnsinOH---Thanks for your great suggestions about how to get out of bed, and to reconfirm that lots of walking helps!!

Thanks so much sharing your stories and for your helpful suggestions!  I hope to hear from you again, and from others as well.

 Reply posted for Marie 053.

I just wound up the in hospital last week with a bowel obstruction.  I've known since an upper GI in January that I had a one inch section of my intestine that was as wide as a piece of string, so it was inevitable I would need to have surgery (AGAIN--third times the charm, right?).  I gambled and decided to put if off.  Unfortunately right where I have the stricture, it got totally inflamed so now they can't do the surgery until that calms down. 

I meet w/ the surgeon on 7/21 and with no further complications, will have surgery 5-6 wks after that.  I've been told that they cannot do this surgery lapriscoprically yet some of you mentioned that's how yours was done.  I'll have to quiz the surgeon on that.  I'd prefer not to have the 6 inch scar I have re-opened for the 3rd time. 

Based on my latest experience, I would say be careful about putting surgery off if it's inevitable like mine was.  The bowel obstruction felt like labor all night--my husband said he'd never seen me that sick before and we've been married 22 yrs.

Lynne

 Reply posted for Marjen.

As far as a normal diet. I've had 2 resections of the lower right where the small and large are joined. I've never been told to change my diet. You will notice certain things are tolerated well any more. Fat, like mayo, greasy foods (fried chicken), gravey, potatoe salad, macaroni salad. Certain salad dressings. High fat contents. Seems like they slide right through you. Was able to work regularly after 6 weeks, no restrictions. I've tried the Remicade, had 2 different reactions. I don't want to use Humira or any of "those" types of treatments. I'm due to have another surgery (I will choose this route over trying something else). I want to be Crohn's free and try the treatments for remisson. Haven't tried those before. Pray one works for me.

Does this help?

 Reply posted for Marie 053.

Hello Marie, (and to all )

I've read so many concerns, worries about having a resection. I'm due to have my third as soon as my doctor gets back from vacation.

1989-1st surgery lost 8 inches

2004-2nd surgery lost 7 inches

2009-possible 3rd surgery.

All of my surgeries have been of the lower right section. I've had the iliuem removed, the appendix is gone (1989). I wouldn't choose surgery unless all other options have be tried. I don't respond well to treatment. Usually meds give me some sort of reaction so that usually leads me to surgery. I don't mind the surgery. I'd rather do it to remove the diseased area. At that point you are Crohn's free. Start on some sort of maintenance meds. to hopefully keep you in remisson. The surgery isn't bad. I've got 2 scars. I call them my battle scars of life. They are long. I'd say the first is about 8 inches long on the right side of my stomach, then 2nd is about 12 inches long and goes down the center of my stomach just on the side of my navel. This time the affected area is about 8 inches again. The hardest part of surgery is the moving around after. If in bed,  Just remember to roll over to your side as you gently bring your knees up to hip level. Using the arm that you've rolled onto work yourself up and bring legs over side of bed until sitting position. Then ease up to standing. Walk, walk, walk. little by little. Many, many times. Especially in the hospital. get up and get going.......just hit that pain pump they give you, give yourself a good dose of pain killer then get up and slowly move. It will make a great difference in your recovery.

Hope this help anyone who needs it.

 Reply posted for kareng.

I have the same situation as you and am going for a surgical consult for a severe stricture at the terminal ileum in two weeks.  I was diagnosed with Crohn's last month but my GI feels I've had it many years.  I've lost 30 pounds in the last 6 months and was thin to begin with.  If you or someone else on the post could answer any of these questions I would greatly appreciate it:  The stricture point is apparently in my lower right abdomin (near my right hip) yet most of my pain, distention, and gurgling are in my upper abdomin below my ribs.  My GI says this is because the entire small intestine is backed up.  Has anyone else experienced this and did it improve with surgery?  Have those that have had an ileum resection regained weight and were you able to return to a normal diet?  Do most people still end up taking Humira or similar expensive medications forever?  Since my condition seems to be deteriorating rapidly and has not responded to any medication, I am likely going to agree to surgery.  I just want to know what to expect afterwards.  Thanks to any and all who respond.

 Reply posted for joybarr.

Joybarr,

Thanks for much for your reply.  Glad to hear your surgery went well and that you're doing much better.

After returning home from the hospital, were you able to get up and down off the bed/sofa etc by yourself without any help?  I ask, because my husband just had shoulder surgery (recuperation is very slow), yet I think I need to have my surgery soon, before he's healed.

Thanks, and take care.

 Reply posted for Marie 053.

I had a resection done on my Ileum back in October of 2008.  I had no choice as the obstruction was so bad.  I lost 1.5 feet of my small intestine.  I would have like to have not had the surgery but did.  The surgery was a success!  It wasn't as bad as I thought. I am much better and handling Humira well.  Wish you the best.

 Reply posted for elle.

Hi elle,

Can't blame you for delaying surgery until you feel worse.  Having surgery is a HUGE decision, and I found myself going back and forth as to whether or not I should have it done.  I FINALLY decided in favor of surgery.  Although I'm still a bit scared, I do feel at peace with my decision.

The results of my recent colonoscopy show that my IC valve opening is only the size of a knitting needle (or smaller).  And since I don't want to risk a bowel obstruction, I have given up eating ALL fruits & veggies (even well-cooked or canned) per my GI's suggestion.  I'm also avoiding all fiber and foods with residue.  I don't want to go on like that indefinitely, as it's not good for my health.

Last week I saw one surgeon, and in about one month I'll see another---then I can make a decision as to which one I prefer.

Good luck to all of you, and thanks again for sharing your stories!

 Reply posted for Marie 053.

Update.

No severe pains...putting off the surgery til things get worse.  Maybe I'll have a long time til then (or not). I am working on getting work & home in order in case I have a long hospital stay.  Whoever said you shouldn't borrow sorrow from tomorrow, must not of had Crohns disease. 

elle

 Reply posted for elle.

Hi elle,

Thanks for responding!  Please let us know how your appointment goes with your surgeon.  I think it's great to have the opportunity to be able to ask questions of the surgeon in advance, whereas with an emergency surgery (complete bowel obstruction, or perforated bowel) one does not have that luxury.  As with myself, only you can decide what's right for you.  Keep us posted, OK?

Thanks,

Cheryl

 Reply posted for kareng.

Hi Karen,

Thanks for your most recent response.  Wow, you hit the nail on the head.  That's exactly how I feel---a ticking time bomb!  When I had my partial bowel obstruction, it cleared on its own without the hospital having to do anything.  But I'm well aware that if it's happened once, it will probably happen again, and may not clear as easily.  I have a great rapport with  my GI doc, so will ask what he would do if he were me.  I can't wait to get his input.  Only a few more days---

Take care--

Cheryl

 Reply posted for Marie 053.

It's funny, I really wasn't ready to have surgery until my GI doc said it was okay. I had been contemplating it since last August when I had a blockage that put me in the hospital, but I was feeling better after that... I had two more times that I almost got put in the hospital for. I was not, however, in constant pain. So I understand what you are feeling. I thought maybe I was crazy for wanting surgery. Maybe I'm a little too gung-ho, who knows? I guess I just figured that, yes, I had scar tissue and it was only a matter of time. I felt like a ticking bomb. Every thing I ate, I wondered if it would plug me up and send me back to the ER. Finally my doctor said, "Karen, that's no way to live."

It's your body so you know what's best. Make whatever decision you feel most comfortable with. But I will also tell you that it's okay to have surgery even if you don't feel sick at the moment. In fact, maybe it's better to do it when you are more able to have a good recovery. Good luck with whatever decision you make!

-Karen

 Reply posted for Marie 053.

I also have pretty much the same dx.  I am suppose to see a surgeon next week.   I went from severe right lower pain (kept me from  sleeping & I could barely walk) to feeling just fine.  I do not want to see a surgeon now.  I feel if it ain't broke why fix it.  But, I know that is not true with crohns....It is hard to justify surgery when I feel fine (now).

Good Luck to you hope everything goes well.

 Reply posted for kareng.

Hi Karen,

Thanks so much for your input!  I'm starting to think like you---maybe better to schedule a surgery, rather than have an emergency one down the road!!  I'm glad to hear that your surgery went well, and I wish you the best on your recovery!

One thing for me that throws a "wrench" into my decision, is that although I was having problems for about 1 1/2 months and severely restricted my diet (lost 10 pounds), now all of a sudden I'm doing better and able to eat more foods again!  So, I actually have to make a decision as to whether or not to have surgery---even though I'm doing better at this time.

After my recent colonoscopy, I did learn that my terminal ileum & IC valve is VERY, VERY narrow, and is most likely scar tissue and NOT simply inflammation.  Scar tissue will not, of course, clear on its own.  But I'm just wondering how long I can go like this before another partial bowel obstruction.

I have an appointment with my GI doc next week, so I'll see what he says---I have LOTS of questions for him.

Take care.

 Reply posted for Marie 053.

I just had my first resection surgery last week to remove a stricture in my ileum. I tried not to get too worked up about it, but it's hard not to sometimes. The way I looked at it is this: How miserable am I right now? (Very!) Can surgery make it a lot better? (Most likely) Will I end up having surgery anyway? (Again, most likely) Would I rather schedule it and get all my affairs in order ahead of time, or go to the hospital with a severly painful blockage and be forced into emergency surgery?

Well, I chose to schedule it! I agree with the other post, the gas pain was the worst. Your bowels shut down after surgery, and they pump you full of air during the procedure. The morphine only "took the edge off" for me; I was in pain for at least 1 1/2 days until I started passing the gas. As far as the procedure itself, I also had a laproscopic surgery, so I have two little marks above my bellybutton, and a 2 1/2 inch incision a couple inches to the right of my bellybutton. Fantastic! I am still on the pain pills, but so far the recovery is going pretty well.

Good luck!

-Karen

 Reply posted for spjawalsh.

Hi spjawalsh,

Thank you so much for sharing your experience.  You gave some great advice, AND calmed some of my fears!

It's great news that after a month you are feeling well for the most part.  I hope that it doesn't take much longer for your bowels to get back to normal.  I hope that you continue to feel better and better each day, and I'm happy for you that your surgery has been a success.

Take care.

 Reply posted for Marie 053.

I was in the same boat you are.  I had been on medicine for years and the opening was getting smaller and smaller.  In February I was hospitalized for a blockage. The surgeon then said there was nothing left but surgery.  I was scared to, but also relieved that maybe I would start feeling better.  I had the same procedure done that you are asking about.  My first advice would be to find a surgeon you LOVE, it will make this whole process much easier.  She gave me all scenarios of what to expect.  I was able to have laparoscopic surgery.  There are three tiny incisions and one about 4-5 inches through my belly-button.  I was in the hospital for about a week.  I didnt have pain from the surgery.  I did have a lot of pain from gas.  In my chest and shoulders.  My surgeon said this was normal.  It has been about a month and I feel good. I am doing pretty much everything I was before.  Just a little slower, not much though.  My bowels are out of wack but again she said this was normal for a while.  It is very scary but was worth it for me.  I hope this helped.