Ileocecectomy 10/30/12 - So Scared

[darubo]

Hi,
I'm new here and need some support and advice.

I've had recurrent intermittent episodes of severe abdominal pain (around belly button) with nausea and vomiting for 3 years now. Many ER and doctor's office visits with diagnoses from functional abdominal pain to fibroids.

Had a hysterectomy in July 2010 that was supposed to "fix" it and then lysis of adhesions in December 2010 that was also supposed to "fix" it but neither stopped the episodes of pain. I never know when one is going to hit me, and I feel like I'm going to die when I have one.

I finally did a camera capsule endoscopy Oct 2, and went back Oct 11 for CT scan and to talk to doctor about what the pictures showed, and he told me the CT shows capsule stuck in the last part of my small bowel. Pictures show numerous ulcers and severe inflammation in small bowel. All previous tests before this one were normal; nothing wrong, etc., so I finally feel somewhat vindicated -- I KNEW something was really wrong for me to hurt that bad.

Doctor recommended surgery to remove the segment of bowel that has the stricture and said he needed a biopsy to help him know what kind of medication to prescribe -- to confirm a Crohn's diagnosis.

I saw the surgeon yesterday, and he said he is reasonably sure he can do it laparoscopically, but no guarantees. I am a very high risk patient because I'm morbidly obese, and he drove that point home. I told him I'm well aware of that fact, but I did fine with both previous surgeries, and I plan to just as well with this one. I know it's a more complex, major surgery, and I feel terrified and overwhelmed, but don't have a choice; it's got to be done.

Not to mention I can't stand feeling so nauseous every day and trying to drag myself to work every day -- I have to work. It's been really, really hard, to say the very least.

I am praying this surgery will help me feel better. I know it will probably be rough going for the first few days afterward, but I will get thru it.

Can anyone tell me if I will wake up with an NG tube? If so, how long will it have to be in? I had one of those during an ER visit, and it hurt my throat SO BAD; I hated it. But I'll deal with it.

I would really appreciate any advice, suggestions, experiences, comments, etc., and thank you in advance.

Dana B.
Houston, TX (Cypress):sign0085:

 

[Trysha]

Hi Dana
Welcome to the forum.
It is natural to feel nervous about any surgery especially with the date so near.
Laparoscopic surgery should be easier on you and the healing is faster.
You will be given pain killers post surgery so that should help.
Chances are you won't need a nasogastric tube so try not to worry about that aspect.
As you say, you do not want to continue in the pain and discomfort you have, so surgery
has been decided as the best option for you.
Visualize nice pink healthy tissue inside and a more comfortable life post surgery.
I am sure there will be others on the forum along soon to let you know their opinions.
Keep in touch and let us know how things work out for you.
Hugs and best wishes
Trysha
Trysha

 

[DustyKat]

Hi darubo and :welcome:

My goodness, you surely have been put through the wringer...:hug:

I have not had surgery but both of my children have had what you are scheduled for. My daughter's was an emergency, she was undiagnosed at the time, and my son's was planned surgery. They both required open surgery.

I think whether you require a NG tube is a surgeon's preference in some cases. Some surgeons routinely place one when bowel surgery is done and others don't, of course your progress throughout the operation will also dictate this. My daughter had one and it was removed day 3 post op. We were told from the outset that my son would not have one and he didn't.

Please have a read through this thread...

http://www.crohnsforum.com/showthread.php?t=30212

...it contains a wealth of information about people's experiences with surgery, my children's included.

My children are now 6 years and 18 months respectively post surgery. They have been in remission since their surgeries and take Imuran as a maintenance medication. They did not have the weight issues you have but rather were extremely under weight. No doubt each comes with it's own set of risks but they both did just fine.

Good luck hun, I am sure all will turn out well and you will soon enough have your life back as you haven't known it for quite some time. :hug:

All the best, :heart:
Dusty. xxx

 

[David]

Hi there Dana. I don't have anything further to add that wasn't stated above, but I wanted to chime in and welcome you and wish you well. We're here for you anytime you need us.

 

[darubo]

Hi everyone,

Thank you so much for your replies to my post; I really appreciate all the good information.

I am getting more nervous with each passing day. Surgery is 1 week from today.

I had to go to the cardiologist yesterday to get cardiac clearance. He did an EKG and said it looked normal, but he is also sending me for a stress test on Thursday, which doesn't surprise me, with my age (50) and my obesity. He told me that the anesthesiologists require a stress test on high risk patients, and I understand. I think it will be fine; I hope so.

I've been reading a lot about this operation, and one thing I didn't know about when I spoke with Dr. Albo, my surgeon, is that the ileocecal valve between the small and large bowel will be removed. That really scares me because I'm worried about pooping on myself, or some other difficulty if the valve that keeps poop from going back up into the small bowel is taken out.

Has anyone had any problems with this?

The surgeon did tell me that I would probably have diarrhea afterward but that it would only be for a short time, or should only be for a short time; I guess we'll have to see how it goes.

Thanks again, and best wishs to everyone.

Dana B.
Houston, TX (Cypress)

 

[David]

Hi Dana,

Many here have indeed had their IC valve removed. Some have no problems at all, others have some degree of complications with it. Everyone is different I'm afraid

 

[darubo]

Hi Everyone,

My surgery is just a couple of days away, and I am growing more anxious by the minute.

I want to ask everyone about the age they were when diagnosed -- when I had my cardiac clearance tests Thursday, the cardiac fellow who was observing the technician doing my echocardiogram told me that he had never heard of anyone developing Crohn's disease at 47 -- I started having symptoms at 47, 3 years ago. I turned 50 in January.

The surgeon did tell me that he was doubtful that what I have is Crohn's, but that the only way to be sure was to biopsy the tissue they remove.
I've talked in a previous post about being scared about post-op pain control.
I have chronic pain from severe osteoarthritis, degenerative spinal arthritis and pain from a partial traumatic amputation of my left foot from a childhood lawnmower accident, so I am taking strong pain medication on a daily basis to be able to hold down a job and work every day.

Because of this, my tolerance for pain meds is high. I did tell the surgeon this, and I plan to go over it again with him and with the anesthesiologist, but I'm afraid they're going to blow me off and not really believe me, or just not give me enough pain relief, even if they DO believe me because some doctors just seem to not want to use a lot of narcotics -- when I had the adhesion surgery in 2010, I had a surgeon like that -- he flat out told me that he didn't like to use narcotics, and I was really hurting. He wouldn't give me more than whatever the "usual" dose is...in addition to this, I'm obese, and I think need more medication than an average/normal weight person -- it just makes sense to me.

What can I do if my pain is not being well controlled afterward? I know I will have to get up and walk as soon as I can and all, and I have a hard time walking normally because of my amputation, knee and back pain. I feel like they're going to have to really load me up with morphine or dilaudid for me to be able to get up and walk for my surgery pain AND for my other chronic pain.

And the IV's...should I expect to have more than one? I'm worried about that, too...every surgery I have had, the nurses have either had a really hard time starting my IV or haven't been able to at all and have had to get an ICU or pediatric nurse because my veins are small and deep. And they have really hurt me trying to get the IV started and can't give me anything to help me calm down until they get one started, and I'm usually a nervous wreck by the time they finally get the IV started. Any advice for this? I'm really scared to think of having an IV in my neck, and I'm scared of waking up on a ventilator -- that actually terrifies me, because a doctor told me once that being on a ventilator is like trying to breathe thru a straw. Would they keep me knocked out if I'm on one?

Sorry this is so long...it's almost 2:00 AM and I'm sitting here alone feeling scared and anxious, and I don't have anyone to talk to, so I'm just spilling all of my fears on this list.

Thanks to all of you who responded to my previous post and thanks in advance for any responses to this one.

Best wishes to everyone.

Dana B.
Houston, TX (Cypress)

 

[DustyKat]

There are two peaks at which it is common to be diagnosed with Crohn's...from about 15 - 25 and then around the sixtyish mark onwards. Of course these are guidelines only and just as many do fall into them many don't. You will find you are far from alone in being diagnosed in your forties.

I don't know the system they use in the US and how it is reviewed. Is a spinal a choice for to control pain post op?
My children had what is called a PCA (Patient Controlled Analgesia) post op, it's where you press a button when you need pain relief. Under this system the machine registers how many times you push the button and how much pain relief has been delivered in any given period, say 24 hours. A dose will only be delivered every 5 minutes but it will still register a push even you don't receive anything. The system is reviewed by an anaesthetist at least daily and based on speaking with you and what the machine has recorded they then decide if pain management is effective or not and if it needs to be increased or reduced.
*Note - the reason I said that the machine will register even when a dose isn't delivered is that is a way for them to gauge your pain requirements. Both of my children were told to push the button any time they felt regardless of whether the light was on or not. That way the anaesthetist can see that your needs are greater than what has been prescribed. Does that make sense?

My daughter had two IV's but the anaesthetist quickly condensed it into one. My son only had one line into his arm but quite a few different lines running into it. Our local hospital leaves lines in until they need to be changed whereas the hospital in the city that my son was in for his surgery had a policy to change the IV cannula every 3 days.
I do not see any reason why they don't have someone from anaesthetics come and do your lines when you need them.

If you are ventilated then you should be sedated. It can be quite traumatic to be awake when you are ventilated hence why very few people are ever on one without some form of sedation.

I hope some of what I have written is of support and comfort to you Dana. :hug:

Thinking of you, :heart:
Dusty. xxx

 

[highlandsrock]

Hello Dana

Sorry to hear you've been having a bad time. Try not to worry too much about the operation. At least you're having planned surgery which is a lot better than ending up as an emergency. I've had the same surgery planned for you, including the removal of my ileocecal valve, and feel so much better. The loss of the valve doesn't seem to have caused any problems. I had to have a laparotomy as my innards were too complicated to sort out via a laparoscopy. I was out of hospital in just under 2 weeks.

Good luck with the op. I hope you don't end up with an NG tube.