Hello

[DaveH]

I was diagnosed with Crohn’s in 1981 when I was 33. At that time I was living in western Colorado and if you presented with gastrointestinal symptoms you were automatically treated with Flagyl for giardia. So it took a year of severe cramps, diarrhea, and a hospital stay before I was referred to a GI specialist 150 miles away over the mountains. After a number of years of various meds, I started on Pentasa. I was very lucky and had few symptoms and occasional mild flare ups. I had about 35 years of low impact Crohn’s. My previous GI doc had been telling me for 10 years that he was amazed at how well I was doing considering the extent and severity of the scarring of my small intestine.

So I guess things caught up to me finally, I went into the hospital 3 weeks ago with a blocked bowel. Inflammation had closed off my small intestine. Painkillers and prednisone took care of that. I started Remicade in the hospital and had my second infusion yesterday. The prednisone has been causing some problems, can’t sleep and have unsettling dreams, but I am in the process of tapering off so hopefully that won’t last much longer. Still haven’t got the diarrhea under control, but no pain.

Now I have to figure out a revised lifestyle. My wife and I are avid whitewater rafters and take self supported wilderness rafting trips every year where we may be days from medical assistance. We’ve had to back out of an Alaska trip this summer and another trip in the fall. Well, maybe more day trips and flatwater kayaking. It was time to cut back anyway, age is catching up to me.

So now I’m waiting for the Remicade to kick in and reduce the diarrhea, I understand that it usually takes a few treatments. But it’s hard to be patient when I was symptom free for so many years.

 

[24601]

Hi DaveH,

I'm glad you were symptom free for so many years. It's (I think) always a shock when you find yourself in hospital but feels more so when you've been doing fine for so long.

I'm curious about what your doctors say about the scarring in your bowel. Are they hoping that you'll get by again even with this scarring and that dealing with the inflammation will open up your bowel enough?

Because the scar tissue doesn't go away (unfortunately) and no meds can treat that. The only way to remove scar tissue is surgery, and while not a lot of fun (I've had 3 resections with strictureplasties and 1 surgery for strictureplasties alone so I feel that I speak from experience on that) it does remove the strictures that put you at risk of a bowel obstruction and which put you in more imminent danger. My doctors have always told me that if I obstruct I have 24-48 hours to get to a hospital so that's a concern if you have a lot of scar tissue causing narrowing and are living with a sub-acute obstruction. Surgery could free you from that worry a bit.

It also might reduce your diarrhea because bowels with hard fibrous lengths of scar tissue and narrowings don't function as well. It's not that I'm really pro surgery - I've really done my best to avoid it - but at the same time it's good to remember there are times when it can improve your quality of life. Just something to think about if the Remicade doesn't improve all your symptoms (or any other meds you want to try) and scans still show the scar tissue/strictures, a resection/strictureplasties may be helpful.

Best of luck. I hope you're feeling better soon and this doesn't change your lifestyle too much.

 

[DaveH]

You are correct about the scarring. The thought is that the prednisone and Remicade will reduce the inflammation that caused the scarred section to swell (shut). It will open up again and hopefully stay open. The meds won't do anything about the scar tissue. If it doesn't work, then surgery is the next step.

 

[24601]

I'm just curious (I hope you don't mind!) but did they think you presented with a complete obstruction? And did they scan your bowel to look for inflammation and make an estimate of how much the inflammation was contributing to the narrowing? Or did they come up with the treatment plan on another basis?

Were you able to eat normally in the run up to your hospitalization? Are you eating now or on a liquid diet or tpn?

Feel free to ignore these questions

 

[DaveH]

I had been eating normally up to noon on a Saturday, no problems. Started getting a pain in my stomach that moved lower down to my intestines. Pain came in waves, kept getting worse as day went on. Had bowel movement in afternoon. Finally went to ER Saturday evening. They did a CT scan, said there was inflamation where my scar tissue was located, had a blocked bowel due to inflammation (the opening had swollen shut). So saline iv with steroids to reduce inflamation. No food/liquid intake. Had daily x rays to monitor blockage. No change for a few days. Nothng passed through until early Wednesday morning. Had a liquid dinner Wednesday night. Soft food breakfast/lunch. They didn't care if I had diahrrea or not, just wanted to see if I got nauseous or not. The GI doc and dietician recommended a low residue low fiber diet for about a week. Then start adding in higher fiber foods very slowly. So two weeks out of the hospital I am eating what I'd say is a lmedium fiber diet. Had my second Remicade infusion yesterday. Intestines have not settled yet, a day of firm stools, then a day of diarrhea.

 

[24601]

I hope that second Remicade infusion starts to kick in soon for you. Fingers crossed!

I'm always curious about others stricturing disease and (just to explain in case you wondered why on Earth I'm being so nosy) the question about the scan was because when I have an mri to look at my strictures they try to estimate how much of a component of a stricture is inflammation and how much is scar tissue. And from that make some judgement about how likely it is that treating the inflammation will relieve symptoms. Now I'm really not sure how accurate these assessments are so I was curious because with a complete blockage you're in a situation where you would really be testing that judgement I think.

But the most important thing is, of course, that this approach is working for you! To be on any regular food would be pretty good but a medium fiber diet sounds like you're doing great. Part of the reason I like to be a little bit positive about the benefits of surgery is because I lived on a liquid diet for years and was in pain even so because of the severity of my strictures - this was due in large part to the prevailing thinking at the time that surgery was a last resort (as well as some bad doctoring) and my tendency is to try to get by (after all that's what I had been doing for years). Now it's a common school of thought that you have surgery earlier so your story stood out for me as different from those I hear these days. And I know this isn't early in your diagnosis but I see this event as you sort of starting afresh with your treatment since the disease has changed course for you. Hopefully you can avoid surgery and be as healthy as you were. Bowels are really complicated things and I've had some of my healthiest times with strictures that really concerned my doctors so it's also good to be guided by symptoms. And if you have to have surgery it's great that the prednisone and Remicade seem to reducing inflammation because minimizing bowel loss is always good

I hope you are back to health soon - and back to your whitewater rafting! Those trips sound amazing!