Question about inflammation in illium

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NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 419
   Posted 1/25/2012 10:05 AM (GMT -6)   
I am asking this question for my cousin who has crohns but does not have a computer but wanted to know some information.  He is 40 and was diagnosed with mild crohns in the illium about 7 years ago.  He started out on 1000mg 4 times a day, then after about two years of being symptom free, they dropped him to  500mg pentassa 3 times a day , and he never had a symptom or a flare until last year.  
 
about a year ago,  he started having bouts of severe pain in the area of the illium that would last for a  few hours  maybe one or two times every few months, then nothing.  This went on for about a year and he thought it was just something he was eating and ignored it.  He had no other symptoms like D or vomiting and his BMs were 100% normal, no blood or mucus.  Then the week before Xmas he started having severe pain in the illium area, and this time it  didn't go away and got worst.  Also he had fevers and night sweats, he could actually start to feel a lump in that area when he touched it and it was very painful to touch.  He went in the hospital and had a CT scan and they found a massive area of inflammation around the illium and admitted him and put him on intervenus steriods and antbiotics.  Within 12 hrs, all the pain had gone away completely, and after two days he was discharged.  They put him on 40mg steriods a day plus 1000mg pentassa 4 times a day.  Today,  2 1/2 weeks after being discharged, he feels 100% better, no more pain, no fevers, BMs normal , and he is also slowly progressing off the steroids.  Now he is at 20mg.  He still feels a lump in his illium area but it is not painfull to touch as before.
 
A couple of days ago he had another CT and the results came back showing the size of the inflammation has not decreased one bit.  It has not got bigger, but it has not decreased.   Because my cousin has no other symptoms like D or blood in the BMs, no fevers,  the GI wants to wait one more month and have another CT, and if there is no change then, he wants my cousin to see a surgeon.  The GI also wants to put him on Humira which my cousin is strongly dead set against because of the cost and the possible side affects and also how it is administered by  injection.
 
The question is?
 
Has anyone had a inflammation in the illium like this where you can feel a lump when you touch it, but have no other symtoms? 
 
How long does it take for this type of inflammation to go away?
 
If it is such a massive inflammation as the CT shows, then why are there no other symptoms like D, or blood and mucus in the stools, or vomiting, etc ?
 
Could this be a stricture?  What are the symtoms of a stricture?
 
Which has the worst side affects long term use of Humira or long term use of steroids?
 
Has anyone used humira and what are your experiences with it?
 
 
 
 
   

Post Edited (NY-Sooner) : 1/25/2012 8:26:01 AM (GMT-7)


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 7461
   Posted 1/25/2012 10:40 AM (GMT -6)   
Long term use of steroids is hands down the worse option by many, many miles. There is a very small chance that a biologic med will cause serious, permanent side effects. There is a 100% percent chance that long term use of steroids will cause bone loss, adrenal failure, and possibly type 2 diabetes, high blood pressure, joint pain....the list is long.

A colonoscopy might give the GI a good idea about stricture vs. inflammation at the TI.

I don't know why your cousin's stool is normal, but if you think about how the bowel works it is the job of the colon to densify fecal matter and absorb water. So if your cousin's colon is unaffected it is still doing it's job.

Has he had a stool sample tested for occult blood? Perhaps he is bleeding, but just doesn't see it.
*******************
49 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (9 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 2992
   Posted 1/25/2012 10:43 AM (GMT -6)   
Welcome to HW! I will try to help with some of the questions.

I have Crohn's in my ileum and my pain comes and goes. I can't feel a "lump" but I think other people say they have. I have no disease in my colon, and I have IBS, so most of the time I am actually constipated. (except for now because I have c.difficile infection, but that's another story altogether) I was in the hospital in December after what we think was a partial obstruction. I had pain that felt like labor contractions except in my abdomen, and I was vomiting. The CT scan showed inflammation and two strictures. After a month of steroids, the strictures resolved.

I have never been on Humira, so I can't speak to that question, but hopefully someone will come along and help with that. The problem with having surgery, is that the Crohn's can re-appear somewhere else, and he also runs the risk of scar tissue forming. So surgery is not a cure and can create the need for more surgeries in the future. If it were me, I'd try the humira before surgery, but that of course is his choice. If you go to ccfa.org, the Crohn's website, you can read more about treatment options. Good luck with everything!
53 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have IBS. Disease spread 12/11 to distal ileum with stricturing.
In a new flare since 9/11_ taking Pentasa- 6 500mg pills per day, Omeprazole, Prednisone, Starting 6MP. .25 mg Xanax for sleep, Zofran, soft/liquid diet for now

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1110
   Posted 1/25/2012 12:09 PM (GMT -6)   
I'll try to answer some questions.
 
The lump he's feeling could either be inflammation or scarring, which could be resulting in a stricture. The most likely test to determine what's going on is a Small bowel follow thru, (SBFT).
 
The symptoms you're asking about, may not be present, as when narrowing occurs, it's more than likely to experience constipation than diarreah. With the stricture, things just don't move through as well.
 
I can't comment on Humira or other biologics. But I would agree, that Prednisone taken enough times, and for protracted periods, will very likely cause serious bone density issues, as well as adrenal gland suppressiion.
 
Some GI's recommend going to the heavy duty biologic meds early on, to prevent permanent damage that the disease can cause. It's a tough decision, and there's two schools of thought on that.
 
There are other meds you can try, such as immunosuppressants. 6MP/Imuran, and Methotrexate are the most commonly used. 
 
You will get a lot of help via this website. I'm no expert. There are many here with a tremendous amount more experience than me, but I hope this helps a little.  
 
Thre

clonehead
Veteran Member


Date Joined Jan 2011
Total Posts : 614
   Posted 1/25/2012 12:41 PM (GMT -6)   
Is the CT saying that the area is inflamed or just abnormal?

When your intestines are inflamed, the affected area is swollen and narrow. A narrowed section of your intestinal tract is referred to as a stricture. When the inflamation is healed, there is typically resulting scar tissue. Strictures caused by active inflamation can go away when the flare is brought under control. My doctor typically tracks my SED rate (blood lab tests) to identify my body's level of active inflamation.

Depending on how it healed, the previously inflamed area may be pretty similar in width to what it was before the inflamation. Frequent bouts of inflammation and healing results in more and more scar tissue, leaving a permament stricture that would remain even when the disease in inactive. My doctor always performs an abdominal exam and she could feel where my stricture "lump" was.

The sort of "lump" caused by scar tissue will not go away via medication. I was first told I had a stricture in 1998. But I had no other clinical signs or problems with bowel obstructions, so we didn't seriously discuss surgical options. I was placed on a biologic (Remicade) plus an immunosuppresent (6mp) that gave me the best 7-8 years of remission.

Prednisone cannot be used long-term. The side effects are known and terrible. Doctors prescribe them to combat flares as a short-term fix, and separately prescribe long-term maintenance meds that are working to keep the disease dormant. Prior to biologics, I just had to cycle on-and-off prednisone. Even ignoring the medicinal side effects, repeated short steriod treatment lead to that whole cycle of flaring and healing over and over, leading to permament scar tissue strictures.
Diagnosed in Feb 1989 at age 14
Just diagnosed, worried about future?
Tips on recovery from 1st surgery

1 Resection: 4" at terminal ileum + 24" of jejunum - June 2011
Current med: Humira (since Mar 2011)
Also take: monthly B12 injection, Calcium, Multivitamin

NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 419
   Posted 1/25/2012 1:06 PM (GMT -6)   
Clonehead,,,,from what my cousin says, its just inflammation.  The lump is what bothers him and he wonders if it will go away as the inflammation decreases.  I see you are on Humira.  Tell me about what it is like to inject yourself and do you have any side effects.  The GI is strongly pushing this on my cousin.  Do you prefer humira or rimacide?

clonehead
Veteran Member


Date Joined Jan 2011
Total Posts : 614
   Posted 1/26/2012 4:30 PM (GMT -6)   
I've been self injecting B12 for almost 2 years now. Ever since I was a little kid, and I saw my grandpa have to give himself insulin shots for diabetes, I thought I never wanted to do that, and never thought I could do that. The first time I did the B12 shots, in the nurses office, I was very nervous and didn't think I could go through with it. However, the needle is very small and doesn't hurt. You feel a little poke when the needle goes in, but it is no big deal at all. It is more painful to have blood labwork done than it is to self-inject B12.

So, I give you that background because I wasn't as hesitant to self-inject Humira after taking the B12. Humira typically comes in a spring loaded pen...so you hold this plastic tube against your abdomen (or thigh) and push a button that insert the needle. It does hurt/sting a little more than the B12, and the injection site is usually still a little sore to the touch for an hour or so. I take it at night before I go to bed, and by the time I wake up it is no longer sore.

I have no side effects to this, and did not have any side effects to Remicade until I eventually developed anti-bodies. The downside to remicade was that it is a half-day process at a local medical facility via IV.
Diagnosed in Feb 1989 at age 14
Just diagnosed, worried about future?
Tips on recovery from 1st surgery

1 Resection: 4" at terminal ileum + 24" of jejunum - June 2011
Current med: Humira (since Mar 2011)
Also take: monthly B12 injection, Calcium, Multivitamin

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 1/26/2012 6:34 PM (GMT -6)   
I had that, it ended up being fistula that what my lump was, and they did go and remove that and the infected diseased ilieum and secum valve, remission fro 17 years after that with no meds, mind you this was in canada in 1989 there weren't many med's in canada back then, in fact they knew very little about cd back then in canada. then went for another 10 years of remission.started the odd flare around 2002, but in 1993 in started to move into esph, throat, that is the issue now.
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