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Posted 12/7/2009 2:00 AM (GMT 0)

Hey everyone, it has been a little while.  I was admitted to the ER and am currently hospitalized because the area above my stricture suddenly ruptured.  Luckily the rupture somehow managed to heal on its own so they did not have to attempt surgery while my abdominal cavity was all infected, hardened, distended, and inflamed as a result of the rutpure. 

Instead the surgeon is going to wait up to 6 weeks for the inflammation to cool down and then go in and resect the stricture and distended area above the stricture that ruptured.  I could lose up to 2ft (50cm) of small bowel, but the surgeon feels that there is a good chance that he will be able to do a strictureplasty, in which case the loss will be more like 1ft (25cm) of small bowel instead because the strictured area consists of several small, short strictures that, they believe, are composed of scar tissue.  Prior to this incident I had no signs of inflammation.

In the hospital they have me on 100mg of IV hydrocortisone, Morphine (for the pain), several IV antibiotics because of the infection from the rupture, a PICC feeding tube that delivers nutrients into my blood steam at my heart valve, and blood thinners to prevent the feeding tube from causing clots.  It is likely that they will keep my on the high dose of steroids (or an equivalent dose of prednisone) until the surgery.

I am looking for advice in several areas:

1) I am worried about the 100mg of hydrocortisone and the possibility of having to remain on it (or a high dose of prednisone) for the next 6 weeks until they can perform the surgery.  My bone density is already low (bordering on osteopenia) but I am concerned that some damage could be done to my bone density or perhaps in some other way from staying on the steroids for 6 weeks.  Thoughts?

2) Surgery -- My surgeon specializes in Crohn's laporoscopic and laparotomy procedures.  He and the entire GI team both insist that this can not be done laporoscopically and must be done through laparotomy (open) surgery.  Does anyone have any thoughts on this?

3) MRI -- The GI team is going to perform some kind of new MRI scan that they claim will conclusively identify scar tissue versus inflamed areas.  They already believe that my problems attribute to scar tissue because of a small bowel series that was done.  Does anyone have experience with this type of thing?

4) Maintenance meds -- After surgery my GI is going to want me to take some kind of maintence med.  Obviously I would like for my maintence med to be SCD combined with LDN, but I know that I will have to go along with whatever the doc tells me this time.  I am terribly afraid they are going to put my on Imuran, 6MP, or an ANTI-TNF.  Does anyone have any inputs on this?

5) My resting heart rate seems insanely low.  It is around 44 beats per minute, but the doctors tell me this is because I am a young, physically fit male.  The thing is that I don't remember my heart rate as ever being anything like that before!  It was always 60-65 BPM at rest.  Has anyone else experienced something like this?  Is is possibly caused by the meds?

Thanks for listening!

Posted 12/7/2009 2:51 AM (GMT 0)
I haven't experienced anything like this (only diagnosed a year ago!) so I can't really offer you any advice but I'm so so sorry you're going through such a tough time :(
Posted 12/7/2009 3:01 AM (GMT 0)
1) I would be more concerned that you will be more prone to infection with such high doses of steroids and then having surgery.

2) I would go with what they say.

3) Cool!

4) I think 6MP or an anti-tnf would be great choices.

5) Not sure. Normally steroids would raise your rate - I think.

Good luck, keep is updated.
Posted 12/7/2009 3:03 AM (GMT 0)
Hi,

So sorry to hear about your recent rupture and ending up in the hospital. Your situation is quite complex, so I'll comment as best as I can.

I don't know much about strictureplasty except I thought it was primarily for only a small segment of narrowed intestine that needed to be opened up. What you describe sounds more like multiple diseased areas. I only had about 14-21 cm of narrowed small intestine, and yet my GI said I was NOT a candidate for strictureplasty.

A friend of mine had strictureplasty and she had a laparotomy. I had a resection and it was done via laparoscopy.

That's fascinating if a new type of MRI can distinguish between inflammation and scarring in the intestine! I haven't heard of this. Prior to my resection in July, supposedly there was no way to tell the difference between the two.

I'm a firm believer in maintenance meds. The recurrence rate for Crohn's after surgery is fairly high, and can definitely recur quicker if maintenance meds are not taken. I certainly understand your concern! My Crohn's first reared its ugly head around 1999-2000, and I avoided going on ANY meds for several years ~ because I wanted to be convinced without a shadow of a doubt that I really had Crohn's; and because I was terrified of the meds and their potential side effects. When I finally accepted that I had Crohn's, I tried several different meds ALL of which I was allergic to. That only left the one I feared the most, and that was Humira. I finally came to peace with it and accepted what I needed to do, and started Humira December 2008. So far, no bad side effects!

I understand that everyone needs to make their own decisions, but having a great GI doc that you totally trust REALLY helps. If you don't have that trust, I'd suggest getting a 2nd (or maybe even a 3rd) opinion ~ regarding the surgery as well as the meds.

I don't know about the meds causing heart rate to lower (I've never experienced this), but if you're at all concerned about your heart, can you ask your primary care doctor to set you up for a treadmill "stress test"? Just let them know that before you go under the knife and under general anesthesia that you want to make sure your ticker isn't having any problems. My heart was/is fine, but experienced bradycardia (slow heart rate) during surgery ~ possibly due to them tugging on the intestine, and also the anesthesia. Since your heart rate is already so slow, I think it's a good idea to look into this.

Sorry if I've rambled, but wanted to address as much as possible.

Good luck to you, and keep us posted, OK?
Posted 12/7/2009 3:10 AM (GMT 0)
I'd agree that 44 is pretty typical for the pulse rate of a physically fit young man. Even if it's a little lower than your typical, I wouldn't be worried about it.

Regarding an alternative to the steroid for the six weeks until surgery, there is only one viable alternative that I know of, and that would be using enteral nutrition (full liquid diet) for that time period. You wouldn't have to worry about steroid side effects or osteoporosis, and it is a valid, clinically tested, steroid-sparing treatment that can have a powerful anti-inflammatory effect.

Posted 12/7/2009 4:16 AM (GMT 0)

Blossom said...
I don't know much about strictureplasty except I thought it was primarily for only a small segment of narrowed intestine that needed to be opened up. What you describe sounds more like multiple diseased areas. I only had about 14-21 cm of narrowed small intestine, and yet my GI said I was NOT a candidate for strictureplasty.

Hi Blosson and thanks for your response.  The other 25cm section is not one continuous, long stricture, but rather several short 1cm strictures separated by, what appears to be, otherwise healthy bowel.  I don't think they will make the final, final decision on strictureplasty versus resection until much closer (or during) the actual surgery.  It is not typically possible to perform strictureplasty on a stricture longer than several cm, but I've heard that there is a guy in New York City who has some technique for handling very long strictures.  For me this is a moot point because my strictures are so short and the danger also come from the distended area before my stricture(s) which absolutely must be resected.
Posted 12/7/2009 4:23 AM (GMT 0)

Writer said...
Regarding an alternative to the steroid for the six weeks until surgery, there is only one viable alternative that I know of, and that would be using enteral nutrition (full liquid diet) for that time period. You wouldn't have to worry about steroid side effects or osteoporosis, and it is a valid, clinically tested, steroid-sparing treatment that can have a powerful anti-inflammatory effect.

I could ask them about that, but I don't know if my doctor would go for it because I have done so well on the steroids, whereas they have no idea how I would actually do on enteral nutrition.  I am just very worried about the possibility of prednisone because, it worked really well for me before, but I had major phych side effects.  My guess is that I am probably stuck with steroids (at least 40mg of the pred) for up to 6 weeks.  Hopefully it won't mess me up too bad :-(
Posted 12/7/2009 4:27 AM (GMT 0)

Rider Fan said...
I would be more concerned that you will be more prone to infection with such high doses of steroids and then having surgery.

Point taken.  I am going to lay low (not go out in public much) to avoid this risk.  I don't want to read into what you said too much, but it sounds like 6 weeks on steroids is probably not going to make or break my bone density.  I also think they will bring me down off the steroids fairly quickly post surgery (based on previous conversations with my GI, who is more of a fan of 6MP / Imuran.)  Like I said, I am a fan on finatical SCD combined with LDN and maybe a little Pentasa or Asacol.
Posted 12/7/2009 4:37 AM (GMT 0)
It's not that it's a "new" kind of MRI, it's just that previously they didn't use MRI for crohn's. Just like a CTE isn't new technology, it's just a new exam with the same equipment. The good thing about MRI is that it CAN distinguish between subtleties in tissues and can see very small structures.

Usually if there are complications (like a rupture) surgeons prefer to do a laparotomy. I had an abcess and ruptured appendectomy with my first surgery and he explained that they if it's cut & dry (no pun intended) they can do a laporoscopy, but things lice abcesses, perforations, stuff like that, they prefer to open you up since they don't know exactly what they will be doing until they see the damage.

As for maintenance meds...regardless of what your doctor suggests, it's your body, and if you aren't comfortable with a specific medicine, you don't HAVE to take it. It should be a discussion you and your doctor have about what things you could do, and what you want or will do. It sounds like you should be on something, as you didn't have symptoms, but had a lot going on and a lot of damage in there. Hopefully your doctor has options and you can weight them and learn about them and figure out what's best.

One other thing...you said there was "danger also from the distended area before the stricture"...that doesn't completely make sense to me. When you have a stricture, particularly if it's very, very narrow, what happens is that the area before it gets all the backed up food and distends. Are you saying that the fact that you are perforated in that area is the danger?

You should talk to your doctor about taking vitamin D and calcium, and ask if there's anything else you should do to help your bones. If you aren't osteopenic, I wouldn't worry too much though. I saw an endocrinologist a while back because I do have osteopenia, and he said with vitamin D and calcium, I should be fine. In medicine, it's all about risk versus benefit. When you really need a medicine like steroids, it's the benefit of it outweighs any risk the medicine has. My GI is very conservative with steroids (which I like about her) and only uses steroids when absolutely necessary. When it's the only options though, she puts me on them.

I hope surgery goes well. They'll have you up the day after surgery, and it'll hurt like he-- but it will help you in the long run. Try to move around as much as you can, and you'll feel better much faster (granted, don't overdo it, but do what you can).

Keep us posted on how you're doing! Good luck!
Posted 12/7/2009 5:16 AM (GMT 0)
Sorry to hear about all your trouble...hang in there!

I believe the Morphine may be causing your slow heart rate.  Is your blood pressure also low?

Posted 12/7/2009 5:28 AM (GMT 0)
"Prior to this incident I had no signs of inflammation."

I'm sorry, I just wanted to see if I understood this correctly, but you were completely fine before any of this happened? I've been to the hospital several times for things that just pop up (haven't we all?), but this is frightening. There weren't any symptoms prior?
Posted 12/7/2009 11:43 AM (GMT 0)
I was on high doses of steroids before my surgery but they weaned me down to 5 mg right before. The doc said it affects the healing process and wanted me as low as possible before the surgery.

Hang in there and keep us posted.

Elizabeth
Posted 12/7/2009 1:28 PM (GMT 0)

LMills said...
"Prior to this incident I had no signs of inflammation."

I'm sorry, I just wanted to see if I understood this correctly, but you were completely fine before any of this happened? I've been to the hospital several times for things that just pop up (haven't we all?), but this is frightening. There weren't any symptoms prior?

Yes I saw my GI doctor a week before it happened.  She said I did not have any signs of inflammation (from doing an exam and blood test.)  There was one warning though, for the past year or so -- no matter what I did and no matter how many steroids I took -- the areas right ahead of my strictures would build up pressure and gurgle a lot.  My doctor and I both suspected scar tissue was at play.  It just goes to show you that once you build up too much scar tissue that drastic things like surgery may be the best option.
Posted 12/7/2009 1:33 PM (GMT 0)

bar77 said...
One other thing...you said there was "danger also from the distended area before the stricture"...that doesn't completely make sense to me. When you have a stricture, particularly if it's very, very narrow, what happens is that the area before it gets all the backed up food and distends. Are you saying that the fact that you are perforated in that area is the danger?

On my last small bowel series with barium, the area right before the stricture was dialated to the same width as my colon, even though it was in my small bowel.  This was the area that subsequently ruptured.  The surgeon plans to resect this area because it has become weakened, distended, diverticulated, and prone to perforations. 

Posted 12/7/2009 2:32 PM (GMT 0)
I too am a firm believer in maintainence meds. My 20 year remission ended with a emergency resection that was quite traumatic for me. My doc told me after that first resection I no longer needed maintainence meds, so I trusted him and didn't take them, ended up with a repeat resection only 3 years later. So I say yes to the maintainence meds. JMHO
Posted 12/7/2009 5:10 PM (GMT 0)
Two and a half years after my Crohn's symptoms first started (I was on no medications due to asulfadine being the only med offiered at the time and I couldn't tolerate it) and after many episodes of bloating and gut gurgling I ended up in ER w/what I was told was a perforation. I refused surgery at that time becuase the surgeon tried to tell me the Crohn's was all up and down my entire small intestine and wouldn't or couldnl't tell me how much small intestine he expected to have to remove. I had seen the SBFT films myself and it appeared to me that there was still just the one area found when I was Dx'd at Mayo Clinici and what this local surgeon was telling me just didn't jive.

I spent 6 weeks in the hospital on IVs w/an NG tube. (This was 1978, no TPN and PICC lines back then). I don't know what meds I was being fed thru IVs. After 6 weeks the NG tube was causing irritation and pain in three areas but I was told I just had to put up w/it. The day finally came that I pulled the NG tube out myself. Sure enough, three bloody rings on the NG tube right where I said it was causing the pain. When they insisted they were going to put another NG tube down I panicked. I callled Mayo Clinic and they told me that if I opted to come I should report to St Mary's Hospital ER. I called the airport, made a reservation for yet that day, called my husband at work and told him he had two hours to leave work, go home and pack some clothes for me, pick me up at the hospital and get me to the airport. By some miracle (God looks after fools), he not only made it but the hospital managed to have all my records and films ready when he picked me up!!!! (1978 was WAY before computerized records). I'm still impressed by both my husband's and hospital's feats that day!

Mayo convinced me that my Crohn's was still contained in the orginal Dx'd area and that they expected to only have to resect about 18" to 2' of small intestine. Given we have 20' of small intestine and that I had according to the Mayo surgeon a 40% chance the Crohn's wouldn't recur (so what if he also said a 60% chance it would recur!!!). The odds sounded good to me. So the very next day I had the resection, open abdomen.

I don't remember the day of surgery once they wheeled me down to the OR nor the day after surgery.

(I'll have to continue this later - I have an eye doctor exam in less than 1/2 hour). But I can tell you that I felt better the 2nd day after surgery than I had in 2 and 1/2 years!!!!!
Posted 12/8/2009 1:46 AM (GMT 0)
I had no pain after the surgery - except when I moved, or laughed, or coughed. BY ALL MEANS make sure they give you an extra pillow to hug to our tummy for laughing and coughing spells. I was kept in hospital until I had my first BM. I think I was in hospital 10 days total including the one day before surgery.

The most important thing you can do for yourself after surgery is walk , Walk, WALK! The more you walk, the better you feel, the sooner your gut wakes up and gets back into action and the sooner you can go home. I had no need for pain meds of any kind for several days before being released and needed none at home.

My only complaint - they didn't call in their best tailor or seamstress for the outer closing. My incision didn't heal as attractively as my smiley from my tubal ligation which was done by my local gynecologist.
Posted 12/8/2009 3:02 AM (GMT 0)
Wow 10 days in the hospital sounds like a real bear! I was hoping that the recovery time would be shorter, but I keep hearing that I should expect a pretty major surgery. The doctors are going to release me tomorrow, but have said that I must remain on a 100% liquids diet until the surgery (which will be in the next 4-6 weeks) and they decided that I should take antibiotics and entocort (9mg per day) leading up to the surgey. They will probably have me taper the steroids when the time draws near, because I've heard it is not a good idea to go into a surgery on full steroids.

As for laughing, I had a really hard time with that this time. One of my family members is able to make me laugh until I have tears running down my face, without even having to try very hard. I had to ban him from the room when I was first hospitalized because it hurt so much to laugh (even with the pillow trick.)

I've been having some problems with my S.O. through this whole thing. She was really supportive and was worried sick when the whole thing happened, but now that I am better she has gone into angry attack mode (Why did you have to work so hard and overextend yourself? Why did you do this? Why didn't you do that differently? etc.) It is really driving me crazy! Is this a common occurance? She is a great partner, but this whole incident has really made her into a monster.
Posted 12/8/2009 3:26 AM (GMT 0)
I was discharged about 5 days after both of my surgeries...maybe you'll do really good and only be there 6 days!

Maybe your SO is just scared, and not dealing well with the stress. Some people instead of being understanding get angry...hopefully that's all it is!
Posted 12/8/2009 3:28 AM (GMT 0)
What is an "S.O."?
Posted 12/8/2009 3:47 AM (GMT 0)
SO = Significant Other

She really isn't handling this whole situation well at all :-(

I'm not sure whether I should nip the whole thing in the bud right now or wait until after the surgery to deal with it.

When it rains, it pours!
Posted 12/8/2009 4:26 AM (GMT 0)
I got out of the hospital only 2 1/2 days after surgery. I felt incredibly lucky yeah. It was laproscopic though. Like CrohnieToo, I didn't need pain meds because it only hurt to get up/down and cough/sneeze/laugh. It's been a little over two months now, and I still have a little soreness where they cut through the muscles, but it's not particularly bothersome.

Hope things go well for you!
Posted 12/8/2009 4:58 PM (GMT 0)

1) I am worried about the 100mg of hydrocortisone and the possibility of having to remain on it (or a high dose of prednisone) for the next 6 weeks until they can perform the surgery.  My bone density is already low (bordering on osteopenia) but I am concerned that some damage could be done to my bone density or perhaps in some other way from staying on the steroids for 6 weeks.  Thoughts?

Be happy you are alive. I ruptured my colon in 1993. I spent 45 days in the hospital after the surgery treating the Gangrene and Peritnitis caused by crap in my stomach cavity.

2) Surgery -- My surgeon specializes in Crohn's laporoscopic and laparotomy procedures.  He and the entire GI team both insist that this can not be done laporoscopically and must be done through laparotomy (open) surgery.  Does anyone have any thoughts on this?

He has to clean you out. In my case theycut me across the underbelly; removed the gut; cleaned up the mess and replaced the gut in sterile water; the sucked out the water. That's big time surgery, certainly not laproscopic.

3) MRI -- The GI team is going to perform some kind of new MRI scan that they claim will conclusively identify scar tissue versus inflamed areas.  They already believe that my problems attribute to scar tissue because of a small bowel series that was done.  Does anyone have experience with this type of thing?

I guess I don't understand this part. Scar tissue causes strictures. Strictures obstruct the flow through the gut. Add some infection and the gut busts. You will even have more scar tissue after this surgery. That's the nature of the beast.

4) Maintenance meds -- After surgery my GI is going to want me to take some kind of maintence med.  Obviously I would like for my maintence med to be SCD combined with LDN, but I know that I will have to go along with whatever the doc tells me this time.  I am terribly afraid they are going to put my on Imuran, 6MP, or an ANTI-TNF.  Does anyone have any inputs on this?

Getting him to let you go on LDN will be a tough sell. It did not work with me and as a matter of fact added to my troubles. None of the immune suppressants are fun but Imuran would be the obvious, plus it's been around for 20 years. You will get a little "honeymoon" after surgery so yo will have a little time to sort things out while you are recovering.

5) My resting heart rate seems insanely low.  It is around 44 beats per minute, but the doctors tell me this is because I am a young, physically fit male.  The thing is that I don't remember my heart rate as ever being anything like that before!  It was always 60-65 BPM at rest.  Has anyone else experienced something like this?  Is is possibly caused by the meds?

I go with the Docs. Be happy it is low. Your plate is full.

Dave D

Posted 12/8/2009 5:48 PM (GMT 0)
When I said 10 days in hospital you have to keep in mind that was 1978, 31 years ago. They didn't kick you out of the hospital while you were still half dead back then. On the other hand, they all too often made you stay in hospital when you felt GOOD and WANTED to go home! I wish they could find a happy medium!

My surgery was open abdomen, about an inch 1/2 above the belly button, around the right side of the belly button and on down about 4-5 inches below the belly button.

Be sure to walk, Walk, WALK as soon after surgery as they okay it and as often during the day as you can. Walking and tucking the pillow to your tummy incision was the quickest way to helaing and getting outta there!

And - I'd opt for the Imuran in a heartbeat. I was in remission for 20 years after my resection and when my Crohn's returned I was reluctant to try anything but Pentasa - which helped - a lot - but not enough. I preferred Imuran from my options and have NOT regretted it. I'm been in full and/or symptomatic remission since 2003 about 6 months after I started the Imuran along w/the Pentasa. I was fortunate to not encounter any side effects from it except perhaps tiredness at first. I just switched to taking it at night instead of in the AM and that problem was solved. YMMV, but I'd suggest it is well worth a try.
Posted 12/8/2009 7:51 PM (GMT 0)

I've been thinking about your post for some time, and am ready to weigh in...what bothers me most is:

1) I am worried about the 100mg of hydrocortisone and the possibility of having to remain on it (or a high dose of prednisone) for the next 6 weeks until they can perform the surgery. 

Why are you on this, if there is and was no inflammation?

4) Maintenance meds -- After surgery my GI is going to want me to take some kind of maintence med.  Obviously I would like for my maintence med to be SCD combined with LDN, but I know that I will have to go along with whatever the doc tells me this time.  I am terribly afraid they are going to put my on Imuran, 6MP, or an ANTI-TNF.  Does anyone have any inputs on this?

Why would there be a need to go for the "big guns" of Imuran, 6MP, etc. - mainly immunosuppresants, if you did not have inflammation? If all you have had is scar tissue, which caused backing up and perforation, then surgery should take care of it.  

The "big guns" should be reserved for cases which have demonstrated active inflammation, and not for cases which have not had a history of inflammation - and where, in fact, inflammation has come to a standstill.

Dave D, as I understand it, the steroid meds you had been on were more likely to have contributed to your problems, particularly eye issues, than LDN.

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