Facing Surgery -- Need advice

[Margie63]

My 19 year old daughter has found to have a blockage now at the end of her ileum. They feel it is due to scarring and not just pure inflammation but they will not do a scope because she is swelled shut.

The doctors are recommending surgery instead of Remicade, she was due to be set up for her first treatment of Remicade soon. The doctors said that when the blockage is due to scarring, Remicade tends to make things worse.

Just wanting to bounce these latest happenings off of some people with experience.

I have heard that surgery should be avoided and then I have heard that some people have had surgery and remained in remission for years.

If they are pretty sure the Remicade does not work, I guess we should just follow their advice on this one. What I am wondering is what to expect from the surgery and if anyone has had one successfully and remained in remission.

While in remission, could you eat anything and did you take maintenance meds or not?

Thanks.

 

[Terriernut]

Oh Margie, you must be worried sick! I've not taken Remicade, so I'm no help there. But I understand it can take a while to really get in the system. If your daughter is completely blocked, surgery must be a viable option at this time otherwise they wouldnt suggest it. Surgery isnt something they just throw around.

Although you both must be so frightened, many have found that surgery was a godsend to them, including me, it saved my life!

With no complications a resection can take maybe 6 weeks to full recovery, but as your daughter is young and no doubt healthy other than Crohns, perhaps recovery will be sooner! It also depends if it's open or done lapro. Emergencies are open....so get it scheduled ASAP if you're going to do it! Once the bowels are working again, she will be started on soft foods, then progressing on to normal foods. Can she eat what she wants? Well, not for awhile! After she's all healed up and on a good maintenance...she can probably go for the occasional chili dog yes! But her body will let her know!

Bless you and your daughter, and I hope and pray she is well very soon!

Misty

 

[DustyKat]

Hi Margie,

I'm so sorry you and your daughter find yourself in this situation...

My children have not had the opportunity to use biologics either as they have fistulising Crohns and they don't work where their's is located (ileum). It is true though that they do make scarring worse.

Yes, surgery is a last option and shouldn't be taken lightly but sometimes you have no choice and that was the case with my two and it sounds like it is the case with your daughter.

My daughter had a resection 5 years ago. Her's was an emergency procedure, we had no diagnosis at that point, and she was in very poor condition going in. She had a resection and her post op period was very uneventful. She has been in remission since then and takes Imuran (Azathioprine) daily. So a very successful outcome. She now lives away from home and attends university.

My son had surgery 8 weeks ago. He also had a non eventful post op period and I found that the beginning of week 4 was the real turn around for him. It was at that point that he was really able to move freely and shades of his old self started to reappear. He is also on Imuran and is taking Flagyl for 3 months.

Both of my children had open surgery as they had other complications (fistula's and abscesses). If your daughter is having laparoscopic surgery then her recovery should be more rapid.

Sarah had quite a large amount of bowel removed and was left with short bowel syndrome. Over time she has gravitated toward a vegan diet and she finds this suits her well. Matt is early days yet but he has had no issues with food thus far.

I don't like the idea at all of my children taking Imuran and there are varying opinions amongst those with IBD as to whether you should or not. I personally believe in maintenance meds and view it that anything we can do to prevent this from returning then that is what we will do. I see CD as lurking, waiting to strike when the opportunity arises, if medication way lays that then all the better.

Good luck and all the very best to you both!

Take care, :hug:
Dusty. xxx

 

[tiloah]

I personally feel that docs wait too long to use surgery as a treatment option. It sounds like surgery is unfortunately necessary in your daughter's case, but I think it's promising that they think she has no active inflammation. It may be that once the scar tissue is cleared out of there the inflammation will stay away for a while and she'll be feeling better. That's the hope anyway.

I myself am going through the process to get surgery soon. My doc and I have to discuss whether I will go back on maintenance medication afterward. (He took me off to bolster my immune system for the surgery). I personally think it would be unwise for me to not be on any maintenance medication, but I am hoping maybe I can take something cheaper than those damn biologics so I have less anxiety about losing insurance. Time will tell.

I wish your daughter all the best with the treatment she goes with. She deserves to feel good and get some relief from this awful disease. She is lucky to have you for support.

 

[crazycanuck]

I never had the full blown blockage but I did have many 'narrowings' which I had to have a procedure done to open up again. That was about 3 months after starting Remicade and my doctor said that because I was so sick before starting Remicade, that the Remicade healed me so fast it scarred in places and became narrowed.

As far as I know Remicade can't relieve blockages but it has been working wonders for me so if she needs to start it after the surgery I wish her the best of luck.

 

[Karissa]

Margie,

I had surgery when I was nineteen and I am almost twenty-one now. My ileum was inflamed and scarred as well. My surgery was six hours long and they removed my ileum and ileocecal valve. I have two tiny scars because they first attempted to go in laparoscopically, but they had to open. I have a two inch scar down the middle of my abdomen. They removed about a foot of my intestines.

I had to have an epidural before surgery but they started me on the drugs before they did it, so I don't remember it too much. I already had a PICC line because I had been in the hospital for a few weeks. I woke up with a catheter and NG tube as well. My pain meds were given by me pressing a button until they switched me to oral meds. It took me about a week for them to take my NG tube out, and then a couple days later, I could start eating. I hadn't eaten for three weeks, so it felt really weird at first. It took about a week for my appetite to return. I started off with soft foods, and then added everything else back in slowly. Also, in the hospital, getting up and moving is endlessly important. Two nurses had to move me from my hospital bed to an armchair right next to it. After time and practice, only one nurse helped me, and then I could do it myself. It took a lot of arm strength and concentration. My scar felt better after time and I started taking laps around the hospital floor. Every movement was very difficult, and it felt like I would never gain my strength back. But I did. I spent three weeks at home recovering, and then went back to school. I was a sophomore in college at the time, and had missed six weeks of the fall semester. I made up all of my work though, and finished the semester on time. Anything is possible.

I'm not going to lie to you. Surgery was the most difficult, terrifying thing I have ever experienced. But I would do it again. It gave me my life back. Everyone's Crohn's is different, but so far, I feel more alive than I ever have. I haven't had a flare up for almost a year. I can eat raw foods again and can exercise everyday. I take 6MP as a precaution, just in case the inflammation comes back. The scar doesn't really bother me. My belly button looks a bit weird, but hey, I don't have constant pain on my right side anymore. It was CONSTANT before. You don't realize how much pain you are really in until it isn't there anymore. I got used to the aching in that spot. It was just always there. I bought a one piece swimsuit last year, just because surgery isn't something that I want to share with everyone. But this year, I bought a two piece again. I know that swimsuits are kind of dumb to be worrying about, but it's the little things that you don't think about. At least I didn't.

Margie, surgery is a big deal. It is something that needs to be thoroughly discussed. My parents, doctor, and I talked about it a lot. But ultimately, it was my decision. I felt like it was my only option at the time. I would choose surgery again and I've never regretted it. If you or your daughter want to send me a message or an email to talk about surgery, I would be happy to answer your questions. I would have given anything to talk to someone my age that had gone through the same thing I was going through.

I hope that helped! And please, don't hesitate to ask any questions! I'm happy to help.

-Karissa

 

[mom2twogr8tkids]

What Dusty said was pretty much right on. I have had several surgeries do to abcesses and bowel obstruction.
I can tell you that Dr's normally use surgery as a last resort b/c it can cause complications. The more they mess with the area the higher the chance of and obstruction.
I wish both of you the best of luck and I will keep yall in my prayers!

 

[Jennifer]

I have heard that surgery should be avoided and then I have heard that some people have had surgery and remained in remission for years.

What I am wondering is what to expect from the surgery and if anyone has had one successfully and remained in remission.

While in remission, could you eat anything and did you take maintenance meds or not?

Surgery is always kept as a last resort. In this case it sounds like its more of an emergency surgery since its closed shut and is most likely scar tissue. Scar tissue cannot be healed only stretched (which isn't permanent and always depends on the person's situation) or removed via resection. After surgery many people do stay in remission for years, that is true.

I had my resection over 10 years ago and I am still in remission. For surgery you get cleaned out (similar to a colonoscopy or at least we used to get cleaned out years ago, I've heard recently that they may not do that anymore for some reason) and then you get put to sleep. I don't remember exactly how long my surgery took, might have been about 3 hours and was laparoscopic (done with cameras and small incisions) with hand assist (makes a larger hole for an arm to fit). Took over a month to heal since the wound got infected and did leave a scar under my belly button (had the end of my ileum removed). Was the worst pain I ever felt when I woke up but I was also given a morphine pump which I gladly used. I was able to eat mild solid foods in about 3 days (they wait until you pass gas).

Yes I can eat anything I want because food does not cause flares. It can cause symptoms (diarrhea, constipation, gas etc.) because everyone has trigger foods whether you have IBD or not but you learn to avoid certain foods through trial and error (everyone is different) or you learn to accept the consequences. Yes I do take maintenance drugs because Crohn's is a chronic illness and needs to be treated. After my surgery I was taking Asacol and 6MP (Mercaptopurine/Purinethol) but since I've been doing well I was taken off the Asacol a few years ago and am only taking 6MP to manage the Crohn's and Lomotil to treat diarrhea as needed. Its not recommended to stop taking medication after surgery because surgery is not a cure.

 

[meardonna]

I've just had a total coloectomy leaving me with ileostomy (stoma) I've never beeen better (surgery was 3 weeks ago) I was put down as indeterminate - meaning they were unable to say for sure whether was crohns or colitis, My consultant wouldn't let me try biologics as I'd been so ill for so long and had tried everything else, he thought it wiould be too much for me to keep trying more drugs, I hesitated cause people kept saying your not ill enough for surgery, well I was when not on verty high steroids, I was also good at hiding how ill I was! also people including people with crohns and colitis saying you haven't tried this and that yet! In the end my surgeon put it to me that if I didn't do it elective then he was willing to bet that I'd be in within 2 months as an emergency! yesterday I got letter confirming it was UC, so am now cured but there was a big chance it would have been crohns. i know friends who've had the same surgery who have crohns, and although they still have some signs of the disease and some relapses its not as bad as before the surgery. my nanna though, her consultant hardly tried any drugs and just gave her resection after resection, I always wonder could she of been managed on a drug rather than rushing to surgery? also with the number of resections and still problems maybe an otomy woyld have been better. its a case of finding a consultant/surgeon that you trust who wil chose surgeery at the right tim e for you, not when it is written should be sugested/

 

[Karissa]

I had my resection over 10 years ago and I am still in remission.

Wow ten years! This gives me hope that my remission will last!

 

[SarahAnne]

Wow ten years! This gives me hope that my remission will last!

LOL! If you like those odds, Karissa, just listen to this! I was also 19 when I had my resection, back in '96. Haven't had another one (yet). October will be 15 years.

That being said, I want to chime in about the scar tissue. It is a serious issue for me. I have a LOT of scar tissue at the site of my resection. Surgery, and 15 years of chronic inflammation has made this part of my bowel nearly impassable. I have a colonoscopy once a year and my GI dilates the area. I feel like crap for a couple of days and then I can eat!! for about 2 months After that, I can literally feel the area start to close up. It's gradual, at first I get a little pain when I eat, then pain and nausea. A few weeks later, I start to vomit anything more than a couple of bites of soft food. Then liquids only. The remicade helps so that I can eat, but it only slows the rate that the stricture closes. Unfortunately, my infusions are 8 wks apart and I start to feel the closing at about week 4. So by the time I have my next infusion I have lost any weight I've gained and I'm vomiting again.

My point is that I believe my GI is putting off surgery in the belief that he's doing me a favor, buying some time or just not wanting the possibility of short bowel syndrome developing. But I can't live like this anymore, it's been 3 years on this cycle (only it was Humira before the Remi, and that was awful. Painful and did not work for me). I think I want surgery now, and he might be going the same way soon. He just put me on a course of pred to get rid of any inflammation and to "help you gain weight." (I'm only 87 lbs). He also scheduled bloodwork, specifically a liver panel and an abdominal CT. He clearly didn't like what he felt when he was pressing on my abdomen.

Sorry about the long post. Surgery is scary but like some others, I am so grateful that I had mine and I'm ready to do it again. It's worth it not to live in constant extreme pain every single day. Good luck!