Facing My Fears: Upcoming Medical Procedures with Crohn's Disease

My subject today is fear. Next Wednesday, I will be undergoing my first procedure since this whole mess exploded in my face last year, and I'm terrified.

I have Crohn's disease, and last year during a routine tubal ligation, the GYN perforated my small intestine - which is why I now have an ileostomy. I almost died from septic shock; it was a miracle my life was saved. The Crohn's diagnosis was made during that surgery, and apparently, the disease is severe and advanced. Since I've never undergone any diagnostic scopes or been treated with any medications, my GI doctor wants to do an enteroscopy and ileoscopy to assess the degree of inflammation and possibly begin treatment with biologic agents.

I'm terrified of suffering another bowel perforation during these procedures. I know in my head she will be careful in light of my history, but I also know how horribly, horribly wrong a routine procedure can go because it's happened to me already. I have three small children at home who need their mother, and I just can't put my friends and family or myself through another prolonged hospitalization and recovery, assuming another perforation doesn't kill me.

My loved ones don't truly understand the depth of my fear. I have been told frequently there are risks with everything (yeah, duh - the worst thing to say to someone who knows that better than most people). It's just one of those days when I don't want to have Crohn's disease. I don't want any more needles or doctors or surgeries or procedures or scopes or drugs. I hate hate hate this; I hate that all of us here have to go through things like this or worse.

I hate being afraid.

Hi Miss Megan. You're a young woman with small children, and I'm an old man with grown grandchildren. No similarities there. Beyond that, however, I hate our situations as you do. My loved ones don't understand the depth of my fears either. My fears may be different from yours and, being a guy, I probably try harder to hide them. You know, guys aren't supposed to be afraid of anything. I've done the sepsis thing, had probes in every natural orifice, then had unnatural ones appear. We're surrounded by well-meaning professionals and laypeople who really want us to feel better. I want you to feel better, and I want to feel better. You will. Not because of anything I just shared with you but just because you'll try to, and you will. Then I will.

Sincerely,

Mike

Hi Megan, just want to say good luck with your procedures, and have faith in your doctors.
Ron in Mich.

Hi Megan. I feel for you as I need to go for my colostomy check-up and that involves another colonoscopy, which I have been putting off since the surgeon who did my last one is not in my medical plan. This means finding another gastro doctor to have it done by. I also was septic and on a ventilator for 10 days after my surgery. I so fear that a doctor I know nothing about will have to go through the stoma and because of this, I risk my cancer coming back. I sure know how you fear and I will pray that all goes well for you. Hometown

Hi Megan, your post hit close to home for me. I'm not on this website much but do "check in" when I receive an email from the website. I too have severe Crohn's disease. I was diagnosed when my daughter was in kindergarten. It was also a year after a horrific accident that left my husband disabled. I tried every medication out there. The only one that helped was a drug called Remicade-Infliximab. I was on this for many years and it felt like I never even had Crohn's. After four years of being on Remicade, I began to get very sick. I developed drug-induced lupus from the Remicade. We tried everything out there. I was not responsive to any other drug and continued to get the lupus side effects from the others. Three years ago, I was beyond sick. I was in denial and was told by my doctor that I needed a permanent ileostomy. I refused and told them I would not live like that. I was so sick I had no other alternative. I was beyond angry and scared! I was 41 years old, and now a single mom. What would I do if something happened to me? My daughter saw how sick I was and knew I needed this surgery. I had it three years ago. And living with a permanent ileo is not easy. I understand your fear. My daughter is now going to be 18 and she is happy I'm well again. I'm still angry but do not dwell on it. There are a lot of individuals in this world, battling worse things. Hang in there and do what is best for you and your children!

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi Megan,
I personally use herbs. I don't like the side effects from Western medicine. I wonder if the pharmaceutical companies are making our meds as pure as they should.

I have had good results from this company (see link) with my nervousness and anxiousness. Check out this page online and pray to the Creator (who actually made this stuff) to guide you to which herbs will help you the most.

Like I said before, this herb company has really helped me. Plus, they are wholesale.

http://www.theherbsplace.com/Nervous_Stress_And_Depression_page_1_c_42.html

Godspeed!!!

PS. Whatever herbs you use, I also recommend supplementing with this herb. It helps your other herbs get full benefit by absorbing into your blood easier. It's cayenne and it is an awesome healing herb for many problems.
http://www.theherbsplace.com/Capsicum_p_382.html

Hi Megan. I am not familiar with the initial symptoms of Crohn's, but I am surprised to hear that it was discovered in an advanced stage in conjunction with a botched surgery. Although my gut has been poked and probed for years, it manages to tell me that something is wrong with this picture.

Your GI doctor is on the right track; and, if you have to be afraid of something, be afraid of doing nothing. When your GI has completed her assessments, you may want to consult with the very best GI specialist in your region. A second highly qualified opinion on the accuracy of the diagnosis as well as the appropriateness of the treatment plan will go a long way in allaying your fears. Good luck!

PB

I am 46 and went through hell in 2011. I had diverticulitis since '06, and 4 long hospital visits and 2 major surgeries. In between, I had the bag and had to work (with a bunch of young crazy maintenance guys). I truly know what you are going through mentally and physically. I wanted to die for real, lots. You will get through this and you will be in my thoughts. I truly KNOW. REALLY KNOW. Better now! Jay from Richmond, VA

I am so very sorry for what you are going through, but know you are in my prayers and will continue to be. I had Crohn's/Colitis and dropped 30 pounds and nearly met the grim reaper, so the only way to stop my constant diarrhea was a permanent ileostomy. After a very difficult and extended hospital stay and rehab, I am doing so well, so that is the good news even though it meant removal of the anus, rectum, and colon. Also, I am a real senior citizen and while it was hard having had a colostomy, reversal, and finally the 3rd surgery, things slowly turned around and I know without a doubt, had it not been for the most amazing husband and family (my son, as called from CA, it looked like time was very short for me) and the power of prayers and friends, I began the healing.

I think one of the other posters got it so right—make sure you get the most professional and best gastro who has done the procedures with a high success rate along with a skilled surgical team! I know you are scared and I so wish I could help with that, but perhaps an anxiety pill just until you get through this might be in order, or find some relaxation techniques to help you.

Please keep us informed as to how you do and when the surgery is, and know this board has a lot of caring people on it!

Hugs and prayers!

Thank you everyone for your replies! It's nice to have support from others who have already been through things like this and much worse, so I guess I'm grateful in a way that all I have to do is get through these scopes and not something terrible like some people unfortunately experience.

I was misdiagnosed for YEARS and never had proper testing to diagnose the disease. I had been told for a decade that I had IBS and there was "nothing wrong." Of course, that was incorrect. I chalk it up to simply bad medical care.

NOW I have a good GI who I do like, but she is a little pushy with the biomedicines. I won't be taking those; I am NOT a lab rat and I have no intention of being experimented on only to develop worse problems later in life because of drugs whose effects are not truly known yet. I will consent to scopes because I do think it is a good idea to get an accurate picture of what the disease is up to a year after my ileostomy, but as far as treatment goes, I will be taking the most natural route possible unless I am building up to a significant event.

I think my biggest fear in having these scopes done is that this is the first time I've been put to sleep or had anything invasive done since the surgery that led to my ostomy last year, and it is bringing back some very bad and traumatic memories for me. I am actually pretty anti-drug - with the exception of Mary Jane, I'll be honest here, LOL - so I don't think an anxiety pill or anything like that is the answer for me. I think the answer for me is probably taking the hard road - mentally and emotionally coming to terms with the events of last year and managing a chronic illness. I do have to admit that there are plenty of days when I wish this wasn't happening to me or any of us; some days I look at so-called "normal" people and envy them their stupid "first world" problems and wish I was like them again. However, that doesn't get me anywhere but feeling worse, so I try as best as I can to let go of those feelings. For whatever reason, that's not my destiny nor is it the destiny of anyone on this board. We were not destined for normal, average, humdrum lives. The hard part is accepting that and having the courage to live the lives we were given.

Hello Megan.

I have been thinking about your letter. I'm a practitioner nurse, and I've had sepsis, diverticular abscesses, and a colostomy that was reversed after almost a year just a couple of years ago, so I can understand your fears. It is a very frightening situation and difficult to put trust in surgeons, particularly when we read in here, and elsewhere, about their mistakes.

What we don't read about so much are their successes, and many more people are alive and well because surgeons have sorted them out!

That said, I think that you do have reasons to be fearful - to introduce an endoscope into a very inflamed colon is a risky business, but equally risky is an unknown situation caused by inflammation from Crohn's disease. However, you've already had the most difficult part of the problem sorted out, in that you are already living with an ileostomy. Losing more bowel, in an emergency situation, would likely not change that situation too much.
I do know, though, that with your health record, no surgeon would undertake a colonoscopy on you without exercising great caution.
In your situation, I'd get myself as healthy as possible, with exercise and diet, and write a letter to the consultant telling him how fearful you are - surgeons can be quite dismissive in an ordinary outpatient clinic setting.

So, you basically have two choices --- 'bite the bullet', get a colonoscopy despite the risk, and allow them to get a baseline assessment on which to balance their prescribing of medications, or play a waiting game. Ask them if an MRI scan would show enough detail? They don't always offer that choice because of cost here in the UK.

On a personal note, I was absolutely terrified of the post-operative colonoscopy -- they also 'scoped' through my colostomy, but actually, I can only remember chatting with the nurse at my 'head' end. We chatted about making jewelry during the procedure - the intravenous sedation worked brilliantly.

Thank you, Hummingbird
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. I know my GI will be extremely cautious in light of what initially happened to me - and she would not undertake this scope if she felt it was too risky to do so. The surgeon who performed the ileostomy agrees with her as well. I have already had a CT scan, but it did not show an accurate enough picture, thereby generating the need for an actual scope. I will be having an enterography and a scope through my stoma, so no colonoscopy is necessary at this time. I've done really well in the year since my surgery in terms of bringing my nutrient panel back to normal and gaining enough weight to not be frightfully skinny. My inflammatory markers are normal, and so is all my other lab work, so the segment of intestine upstream from my diversion is not what you'd call severely inflamed, but there is some inflammation going on there that was not present at the time of my surgery.

Since the GI knows how fearful I am, I will be receiving general anesthesia to undergo both procedures because I am not mentally ready to be awake for something like that. My big fear is the aftermath - going home and playing the waiting game of "Did she accidentally perforate my bowel or not?"

It's pretty scary.

Wow, so many wonderful responses here. Many encouraging words and words of wisdom.

All I can add to this thread is that when I am facing something I find quite difficult I pray to my Father. He is the only one who can take away those fears. Talk to Him about what you are facing. Feel His love and comfort. There is nothing He can not do.

I truly agree with Mrs. A, people are not whom we hold our faith in. Pray to the Almighty for He is all we have. Surely, He puts the right people in our paths when we pray for help. I will pray for you to have faith and for the Lord to calm your fears. Fear is a powerful thing, but God is more powerful; look to Him.

Miss M&M
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I truly understand how you are feeling. I also got perforated last year...not once but twice and, long story short, am lucky to be here.
I was just thinking...at some point I saw an ad here for a pillcam that eliminated the need for scoping. It was simply a camera pill that you swallow and it goes through taking pictures. Might be worth considering as an option.
All the best,
Focus on the power of love...not fear. You are not the fear.
God bless.
Lisbett

Thank you all so much for your kind words

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  I'm trying to just let go and accept that I can't control everything and if something is going to happen, it's going to happen and I can't stop it.  What I CAN do is deal with it, fight it, and rise above it, which I know I can do because I have done it already.  I DID fight for my life and I DID win, and after I won I rose above.  So if I have to fight that battle again, I know I can.  Even if it's scary.



Yes, vikinga, perforation sucks right out loud.  I had my first one last year and it almost killed me.  Its the reason I have an ileostomy today.  I did ask the GI about the pillcam - she is concerned that if I did that, it would cause a blockage.  I do trust her - I got not one but TWO second opinions about whether or not I should be having this done and both of them said they felt it was reasonable and safe for me.  It's like one other hurdle to jump over - to try and move past the events of last year and not let them paralyze me in my journey upwards.

MissMegan, someone told me to check on you in here. I am so sorry I've not been here to catch your initial post regarding your fears. Your fears are not unwarranted at all, but my heart goes out to you, and you have been and still are in my thoughts! I have had countless scopes, and luckily no perforations or problems from them at all. They sedate me for each and every one of them, though (I think for 'their' sake more than for 'mine' HA!). Seriously, sedation makes both my GI staff and myself more comfortable. Please keep us informed about how you're doing. As difficult as these things can be, to diffuse worry is not always easy, that is for sure. You're going to be just fine, sweetie
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~Doe

Awwww, thank you so much Doe - you always make me feel better

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  Yeah, I think they are sedating me for their sake too LOL

MissMegan, your fears are valid and don't let anyone ever tell you that you are overreacting. You will be held in my prayers as you get your colonoscopy done.

I fully understand why it took so long for them to diagnose you. I had FAP since the age of 33 and I too was told that it was IBS. 15 years of misdiagnosis and agony which could have been helped if I had had a colonoscopy. But, colonoscopies are not covered by most insurance carriers without a lot of justification.

I have to have an endoscopy every 4 months now and I've been having them since January 2012. With the warning of possible perforation, I've done pretty well so far. I've only had 1 mishap. It was terrifying, yes, but I'll be back in there in November to have my next endoscopy no matter how nervous I am.

You have to do what you need to do to remain healthy, to stay alive.

Pray to whatever higher power you hold dear and do what you have to do, MissMegan, we'll all be praying for you.

*Hugs!*

Thank you so much Zalibee

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  It's so nice to be able to come here and express myself without being dismissed as being melodramatic.  My friends and family are very well meaning, but they have absolutely no idea why I'd be so fearful because "nothing" is going to happen, it's so rare, blah blah.  Yes, it would be rare for THEM, not for people who have digestive diseases.  I'm glad they can't understand how I feel though, because I wouldn't wish this on my worst enemy, never mind my loved ones.  But the people here really GET it, because they've all been through this and WORSE in a lot of cases.  I'm actually grateful that the scopes are the only thing worrying me right now, because I've heard a lot of terrifying and sad stories from other people.  



It reassures me to think we're all here for a reason, we all have a purpose, and we are all supposed to go down the roads we're taken down even if we don't want to travel them.  I read your blog and I think this applies to you as well

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  You are here for a reason, you have a purpose, and you are supposed to travel your road so it can lead you to something wonderful.  You just haven't reached the end of it yet - but I believe there is a pot of gold waiting for all of us.  Just hold onto that when you feel down and sad, and find yourself reflecting on some of the bad hands life has dealt you.  Dawn always breaks.

I'm glad that I was able to say something helpful.  

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This is just another example of yet another topic started by someone needing to express and reach out, and look at the responses in here, much love to each of you! This is another fine example of us coming together to show each other how much we really understand each other and care about each other. Very cool people in here, indeed. xoxo

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Fear is a wonderfully powerful emotion that is so hard to quench.

I remember so many times waiting for a procedure, thinking in detail about what they are going to be doing to my body. It seems to help me if I keep a detachment between myself and my body. I'm not a spiritual person, but I still find it easier to have people do terrible things to my body as if it were a lab specimen instead of me.

At the last moment, before they start, I'd take two deep breaths and announce to the doctors, "Do it!" I imagine that this is the feeling just as one steps off the ledge or the moment before charging the enemy in battle. In part, it is a really scary moment, but it is also exhilarating. It is being able to make yourself do something that is counter to your entire being. You want to run, but instead, you step forward and willingly take the damage.



It reminds me of the scene from Lawrence of Arabia. He has this trick where he can light a match and let it burn down to his fingers and extinguish itself. He shows this to a coworker who then tries it. When the flame reached his finger, he shouted and dropped the match, "Ouch! That hurts! What's the trick?" Lawrence replies, "The trick is not to care that it hurts."

I'm curious... does anybody else get a little bit high from overcoming fear?

soooo? how'd it go?

When they finally put that needle in my arm and I'm out, the fear passes only then.

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Doe's right. There's a real community of kindred spirits here; and, underneath everything, we come here for fellowship and inspiration. I am constantly amazed and gratified to see so many of us looking past the present moment and circumstances for some broader perspective.

Well, I see fear as an absolutely essential survival skill. Without fear, we would be subject to all sorts of things that go bump in the night. Fear is vital; however, it's not enough. What's also needed is trust. Imagine a world without trust. How could you possibly drive a car unless you believed oncoming traffic would stay in their lane? How can you possibly undergo a colonoscopy unless you truly believed your doctor was competent?

People who can effectively balance these two elements have more satisfying experiences with life.

   PB

Hi all, fear is what makes us all stronger as we look back at it and think, "I did that," and I stand up and go on, sometimes with help from family or friends, but we live to fight for another day and live our lives with our bags.
Ron in Mich

I think the high comes from realizing you overcame said fear...

I think the high comes from realizing you overcame said fear...      


I don't know if I agree. It isn't a reflective process, but an instant euphoria that comes when I say, "Do it!"

I suspect there must be some neurochemistry involved.

Thinking about other human endeavors, for example WWI, I wonder what it takes to climb out of a trench and run through machine gun fire?

I was just wondering if others have this feeling -- almost like embracing fatalism.

I don't know if I agree. It isn't a reflective process, but an instant euphoria that comes when I say, "Do it!"

I suspect there must be some neurochemistry involved.      
So, more like an adrenaline rush?



Well, I find myself embracing fatalism quite often, now that you mention it... assuming I understand what that means.