Really scared!!

Hi Davis
Have you ever had a small bowel series?? Where they make you drink barium and then take x-rays every 15 minutes until it reaches your colon and then they use a paddle to move around your small intestines and take more pictures??

The reason I am wondering is because I had a double contrast cat scan that also showed thickening of my ascending colon.. and so I was admitted for IBD. All the GI doctors I spoke to said that a small bowel series was necessary to see the whole picture because it CAN see inside and your stricture and it can be measured fairly accurately, and the lumen (inside) is also very clear as to how wide it really is. Also.. this is an old-fashioned analog type of test and costs a lot less.
I would run like hell from a doctor that didn't use all the tools in the arsenal first before cutting me open.

On my 2nd opinion about 6 months ago, I was also told that Humira and the other biologics are the worst meds to take when you have already been DXed with strictures. IF there is still inflammation and not just scar tissue it can heal it too fast and cause even more scar tissue and make the stricture even tighter!!! A big shot at Mount Sinai in NYC told me to stay away from them. He also told me to get the resection ASAP so I can start living a more normal life!

SO... this is your dilemma.. You probably need a resection BUT maybe the drs haven't run all the tests they should have.. one of the reasons to go to a dr that has a lot of Crohn's patients. They have a lot more experience.. Your dr is probably worried that you might end up needing emergency surgery in the future if they don't take care of this now.

What I suggest you do is ask for this SBS test.. go on a low residue diet (mainly white foods like bread and pasta.. no fiber!!!) don't eat anything with skins, nuts, seeds, and nothing bigger than a juicy juice straw.. chew very well!!! Make sure everything you swallow can fit through that... NO fresh fruit or veggies.. just canned peaches, apple sauce and juices.. That is how I've been eating for the last year and a half. I don't even eat rice as it would get stuck! Think cream of wheat cereal, almond butter with polaner jelly w/o seeds on white bread for lunch.. and I'm sure there are plenty of people on here who can also chime in on what they can eat with their strictures.

Also.. I was put on Pentasa and Entocort as the first drugs to take along with a PPI for my gastritis.. You didn't mention if they went straight to the Humira? I can tell you that all these drugs really helped me.. and along with the diet I've been on I haven't had any more pain or blockages.

Now on to the diarrhea.. I have to get all those same bits cut out.. Ileo-cecal valve, cecum, and about 8 to 10" of TI.. I was told that for some reason women adapt faster and better to the missing "check valve" and that in a few weeks (can be months) our colon takes up the job of absorbing the faster flow of liquids into our colon so that diarrhea won't be an issue. This idea of diarrhea has bothered me as well and I can only hope that I am one of the lucky ones this doesn't happen to.

Please do more of your own research on line. I read through sooo many medical briefs before I was content to go through with my resection. I would have had it yesterday had it not been for another hospitalization for something entirely different. Don't rush into anything!! You only have a certain amount of small bowel.. that is where all the nutrition is absorbed from your food.. the less you have the more malnourished you may become. People who have scar tissue and inflammation in their TI almost always need B12 shots because that is where all our B12 is absorbed. Are you getting B12 shots? Are you anemic? How is your sed rate and CRP (inflammation markers)? These are all things you have to know about to make an educated opinion on your drs and your own condition.

NY VEGGIE

Hi Davis,

First of all the doctor CAN perform a couple of different tests to see the small bowel. One is a Capsule Endoscopy. This one is great for seeing any legions, abscesses, etc. The drawbacks are that no biopsy samples can be made and if you do have a stricture, it's likely to get stuck. But if you're scheduled for surgery anyway, I would go with this option because then the doctor will know for sure and so will you.

You can also do an MRI scan with contrast. They have you drink barium and give you an IV with contrast. There is minimal prep and the doctor can see your small bowels illuminate. This is how I just got diagnosed with 2 strictures. Doctors cannot see much (if any) of the small bowel with a colonoscopy unless they use the double balloon and even then it's sketchy.

Who is doing your surgery? You make SURE it's a colorectal surgeon, no other will do! Also, get a second opinion completely outside of the group you are seeing. Check your doctors credentials, find out how many Crohn's patients he works with and what his outcome has been. My experience is many of the GI's out there are ignorant when it comes to CD.

If you do have to have surgery, this could be a good thing. I went until the pain was unbearable and I was malnourished. The surgeon told me a molecule wouldn't have gotten through, but I lived like that for years. I ended up having 7 strictures and 2 fistulas. I had "short bowel syndrome" after the surgery but it DID go away. It doesn't sound like he's taking out enough that it would last (the watery stools which IS diarrhea.) The most important thing is having doctors you trust and support when you are recovering.

Good luck to you and please keep us posted!

No colonoscopy has been done?

Hi NY VEGGIE,

Ok so here goes. Like all of us my history is kind of long. In May of 2007 at the age of 26, I drove myself to the ER because of a painful mass I had felt in my lower right abdomen. The ER doctor gave me a CAT Scan with barium only to Dx'd with Crohn's Disease. What brought be to the hospital in the first place was my decreased appetite, throwing up, and of course the pain. I was immediately referred to an Gastroenterologist.

After my appointment, he had immediately scheduled me for a Colonoscopy with a biopsy which confirmed the Crohn's. My doctor had said he was unable to get into my small bowel at all. I was immediately placed on entocort and pentasa. None of these therapies worked.

In May of 2008 at the age of 27, I was driven tot he ER and given a CAT Scan which revealed a small bowel obstruction. I was quickly given a nasogastric tube. I was in the hospital for 4 days.

After my visit I was told to follow up with my GI doc who determined that I should start 6-MP. Initially i was taking 75mg based off my body weight. This did not work either! It was recommended that since I live in the Philadelphia area that I see the top GI doc at Univ Penn Hospital - Dr. Lichtenstein. He said that since I was gaining weight that I should bump up to 100mg of 6-MP. I was also told to follow up with the attending surgeon of my first hospitalization (current surgeon for may 26 2011), he had me do a barium study which determined that it wasn't necessary to have surgery. Ultimately i was on steroids for 8 months with the 100 mg of 6mp. I was feeling great after getting out of the hospital.

In April of 2010, I wound back up in the ER. Again I was given a CAT scan and they determined that it was the same problem - bowel obstruction. I was not in need of a NG tube this go around.

After getting out, I was sent to Thomas Jefferson Hospital in Philadelphia and was told to see Dr. Kozuch. She is the top IBD Dr. at Jefferson. She determined that I should start Humira and if that worked stay on it. However she did warn me that if this didn't work that I would need surgery! In July of 2010 I started the Humira. I was gaining weight finally and feeling even better. However in April of 2011 I had two flare ups. The first one was at the beginning of the month. The last one was two weeks later. I followed up with my GI doc who sent me to the same surgeon and had me do a barium study as well. The results I posted above. The surgeon gave me another CAT Scan and said pretty much the same thing as above. He did say that you are not in dire need but it is recommened that we do this. My GI doc agrees as well.

With all of this said, would you do the surgery?

Some patients who don't do well on 6mp seem to do better on azathioprine (a brand name is Imuran).

My daughter's first colonoscopy didn't show the terminal ileum because a stricture prevented entry into the small intestine. But the second colonoscopy did go into the small bowel, because there was no longer a stricture blocking the way. So it sounds like your doc was unable to get in because of a stricture right at the end of the terminal ileum.  

You had nearly a year without a single flare? No symptoms, either? It really does sound like you might have time to explore options in diet and meds other than surgery, which is not a permanent solution, anyway.

I'm not so sure you have scar tissue, which in my opinion is the only reason for surgery, because it took you so long to have a flare, and the flare resolved so quickly. Even after surgery, you still need meds, so perhaps the focus should stay on finding the right med or combo of meds. Even maybe for looking at LDN. 

 

davis7029
  Well I had a resection before and I mean like 2002 and then had a Total Colectomy last Feb... But the resection they only took like just enough to not have a appliance.  Are you going to end up with a appliance or are they re-connecting you.

With my total colectomy I was re-connected.  Have had a very rough 14 months but now I am doing great as long as I stay away from foods that slow down my sm intestine, and anything greasy, fried, raw fruit and vegies...so I stick to mostly chicken and turkey, baked potatoes, and steemed carrotts.  So for me I have a problem and will be sent to OSHU a teaching hospital in Oregon to have a fat absorbtion test, along with others as I am not getting my neutrition that my body needs.  But if I eat whatever I want I pay dearly so I just dont go there.

So hope everything goes well for you.  We will all be praying for you and yes be your own advocate...I had to reserch for years to find out what was going on with me and through this site, help me to know what tests I need to have to get me to my surgery.

This is a amazing site for help and support so I hope you along with everyone else will use this tool.  I tell people all the time about this forum

Leslie

Todd, keep us posted...good job.

Leslie