Upcoming Surgery

[Wish2BCrohnsFree]

Hello
I am in my 40's and have Crohn's, mainly in the small bowel near the terminal ileum. I had symptoms for many years (mentioning them to my GP) but wasn't diagnosed until 2000 after chronic Anemia and a diagnosis of Osteoporosis prompted a referral to a GI spec followed by a colonoscopy.

The TI was so narrowed, the GI could not put the scope thru to examine. A SBFT, (small bowel follow thru), showed subsequent strictures for which I will be undergoing surgery soon. I have had many blockages, and just as many trips to the ER (not too fond of that place!) so I have learned to be really careful what I eat and chew my food better. This has helped but my GI saying I was an 85% risk for emergency surgery has made me finally accept that I need to go ahead with the surgery.

I have all the usual yucky symptoms of Crohn's as well as the embarrassing ones. My family has been really supportive, especially my husband, although they don't fully know what it's like, they try hard.

I am quite nervous about the upcoming surgery, likely this month (Apr 2010) and have put it off for 2 years. Part of my anxiety extends from also dealing with the pain of Anykylosing Spondylitis and Fibromyalgia. A simple trip to the dentist increases my pain. I do not know what it is like to NOT feel pain, I have it 24/7 both in my joints and in the soft tissue areas.

So I am worried about the usual concerns, infection, scarring, further surgeries, but primarily about the PAIN during recovery. I a worried I will get hooked on pain killers or be really emotional after coming off them. Presently I take the maximum dosages of Tylenol (about 3600 mg/day) and about 600 mg of Ibuprophen a day and 200 mg of Tramadol. I finally succombed to taking Tramadol, to try to get some sleep at night and relax the muscles although I still wake up in intense pain during the night.

My surgery is going to be invasive, not laparoscopic as the surgeon explained that he will have to do a resection which would require a long incision anyways. He is the best in the immediate area, although there are others about 5 hrs away that I could get referred to but do I respect his opinion at this point so have decided to go ahead with him.

Would love to hear some positive thoughts from any in similar circumstances, or who have any words of wisdom!

 

[Crohn's 35]

Welcome to the forum Wish! Catchy name lol. There have been a lot of Canadian Crohnies joining here which seems scary eh? You have come to the best place to get answers from our experiences and keep in mind none of us is exactly the same. I had the laproscopic the first time but not the second. From my experience I know now that I not let them operate when I am infected. You have other underlying issues which I dont have and there are others who do and will give you their thoughts.

Stress is a major gut wrencher and so is Ibuprophen, or asprin. I too have Tramadol but I rarely use them. I too am afraid of being addicted so I got off Oxycotins. I rarely ever took a full pill. Surgery is so much better after, you can have a better life and possibly your other symptoms will be lesser of pain.

Ask your surgeon about having an epidural, it will be so much better and hopefully so you dont have to be on pain killers. With any drug though, drinking plenty of water is crucial.

I would also ask the Gi or surgeon what is your post surgical course of meds. Most people do well on the biologics...I am not one of them but methotrexate seems to be helping me.

Best of luck on your surgery, glad you found us and wonderful that you have support at home. Lots of wonderful people here to help you out. Please keep us updated ok? Hugs!

 

[Wish2BCrohnsFree]

Hi Jettalady! Thanks so much for your "welcome" and input. Nice to be able to speak with others who know, from personal experience.

I have had visitors from out of the country so haven't had a moment to log on until now.

My GI spec and Rheum both have recommended I go on the biologics and am likely going to go ahead once I am healed up post-op. Am considering Cimzia but have not crossed Remicade off the list yet.

May I ask how much of a resection you have had, and was in in the small bowel or large? How did you cope with the recovery? How soon did you introduce foods etc.?

Co-incidentally, I was born in Ont! Haven't lived there for many years though. Not sure if geographics plays a role or not? Your comments appreciated...

 

[orchard archer]

CrohnsFree, As Usual Pen is Great at advice!
Again the Ibuprophen and Aspirin can get to the guts, be careful.
Never was given Epidural as an option but, I read good things here about them.
Being on 60mg of Prednisone and Morphine after Surgery 1st one was a poor experience for me. May work for you? Talk to your Dr.?
2nd Surgery I asked for Demerol instead of Morphine and it worked much better, This is usually 2-3 days intervenous right after Surgery and you have a button and control the how often you get a dose.
I had 14 inches removed around 8 inch small and 6 inch large.
Questron, Is sometimes used if You have Diarrhea 2-3 months after surgery.
Mention it to your Dr. In a Follow up Appointment.
It happens if Large Intestine is Removed, Has to do with Bile Secretion.
On my 2nd Surgery, This was Because Scar Tissue Build up at 1st Surgery 15years Prior.
(This is Interesting) Hope I Explain this Right!
The Surgeon Said instead of Connecting the Intestine straight together,
He (Overlapped) The Intestine to make the Resection Wider to avoid less chance of Scar tissue Build up.
They also gave me alot of liquid Telenol after off of IV Meds, and low Dose of Vicodin. I To worry about Addiction, and only try to manage pain and try to avoid getting High.
There is a Measure of Tolerating some Pain but, I'm Betting You been Doing it For awhile and are good at it Now.
I had 2 Surgeries, You Notice The Improvements Daily and See That you Want Out of The Hospital and Work for it.
The Nurses were Great and are Key to Communicate with.
Both Surgeries were Large Cuts Straight Down my Belly and Took about 4-6 weeks to completely heal.
The Thing for me was to get my house Simpler for a few weeks after Surgery, No steps, Easy access Restroom, T.V. in front of Bed. And get Excercise everyday in Moderation.
I don't have Fibromyalgia so I know nothing to help you there.
One Thing about cleansing out The Night before Surgery. It Seems to Pre-occupy me some.
One last Thing I like to Think, It will Pass and be a Story I will tell.
My best wishes are with you....Archer

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Never let One Persons Opinion Define who You Are!

 

[UnemployedDueToCrohn's]

Supplements

I can not take enough of them on a regular basis! But the more I suffer, the more I try to remember to take them! Especially those that increase energy and healing. I take the max everyday.

 

[Wish2BCrohnsFree]

Thanks again Jettalady for your input and suggestions. Very helpful!

To Orchard Archer - thanks too for your response. Good tips and I need 'em! Every once in a while I catch myself being a little emotional and overly concerned about this fast approaching 1st time surgery but am working on that. Trying to be pro-active and apply suggestions from you folks!

Am doing a little prep around the house and in my mind. My surgeon is highly recommended so that is a comfort and relief somewhat.

I will be going in the end of this month and believe that he will be cutting out some of my TI and approx 6-12 inches of small bowel but won't know until he examines internally. It's probably small in comparison to some, but large for me given my painful circumstances and being a 1st timer under the knife!

Trying not to be a whiner and stay positive but am a bit anxious none the less. I am sure you've heard it all before....

Any other recommendations appreciated. At some point I may have some positive advice to give others...