Stricture question?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1498
   Posted 9/3/2010 3:03 AM (GMT -7)   
My daughters CD has seemingly been under control for about the last 2 yrs. She seems to tolerate the Imuran she's on pretty well, and we hope that it's doing it's job.
For the most part, she's been fine, good bloodwork etc., except that for the last several weeks, she seems to have very little appetite. She often will last all day without eating, then may have one average meal. Some days she will eat normally, but for the most part, no appetite. She's had no pains. 
She does have 2cm of stricture in her ilium. Does anyone dealing with strictures have a problem with appetite? Is this a sign of anything unusual? Is no appetite abdormal or a concern of anything Crohn's related?
 
Thanks,
Tom. 

tooth
Regular Member


Date Joined Jun 2010
Total Posts : 337
   Posted 9/3/2010 5:44 AM (GMT -7)   
A lot of factors can be causing what's going on with your daughter. But I had a similar thing happen to me, so I'll tell you what happened to me. I'm on Imuran and I also have a stricture at my terminal ileum.

Been on Imuran for 8 years, has kept the Crohn's at bay pretty well. The Imuran kept the symptoms quiet, but the disease was still active for me (evident by inflammation on my last colonoscopy.) I didn't do anything about it and continued on at 75mg for the next 2 years. about 6 months ago, I noticed increase gurgling noises and decrease appetite. Didn't think much of it. about 3 months ago, my pain came back and I was in the middle of switching docs, so I did a prednisone taper. Once finished, the symptoms came back and I finally made it to the new GI. He told me that even though the Imuran kept everything mostly in check, it's possible that the body gets used to the level that you're taking. Good news for me, they bumped up my Imuran and my pain's gone away. Still have some problems with the stricture site, but my symptoms are vastly decreased.

Same thing happens to my future sister-in-law on Imuran. She seems to randomly lose her appetite from time to time. Wait usually a month or so and it comes back.

To me, loss of appetite indicates a flare might be brewing. Has she had any other symptoms? Increase bathroom runs? Arthralgia? Maybe give it a few more weeks and if doesn't come back, call her GI. I hope she feels better!

blueberrydecaf
Regular Member


Date Joined Jan 2010
Total Posts : 257
   Posted 9/3/2010 7:46 AM (GMT -7)   
I have narrowing in my ileum and cecum. I am on prednisone right now after a flare where I completely lost my appetite. This happens to me when I flare because my pattern is that I often get a low grade fever when I flare up. You might want to check her temperature as the fever and loss of appetite for me go hand in hand. My pattern is that I start off okay in the morning and then my fever increases and appetite decreases as the day goes on. Sometimes I just get one day of fever and then not another for a few weeks. If fevers are happening, see the doc (I left mine too long). But, it could be a number of different reasons too and that is just me!
diagnosed 2003
vit D, calcium, iron when my tummy can handle it
stopped Pentasa
prednisone 35mg

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/3/2010 9:03 AM (GMT -7)   
Tom, when I am not feeling so hot, the first thing I lose is my appetite. I went all day yesterday eating only 2 pieces of toast and 1/2 banana. Nothing sounded appetizing.

Maybe she is just like me at the moment, and having a bad day here and there. If I eat the wrong thing, it usually makes me like this for about 2 days, then I am okay again. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1498
   Posted 9/3/2010 9:54 AM (GMT -7)   
Thanks for the replies. Just to answer some of the points brought up. She doesn't have any fevers. No unusual bathroom issues. Her activity level is normal. I can't think of any other unusual symptoms right now. It has been extremely hot here in the Northeast of late, perhaps that has dampened her appetite. As Nanners indicated, maybe just a couple of bad days here and there. After having this amount of time in with this disease, I really try to have patience, and not overreact. I'll keep tabs, but hopefully things will improve.
 
Thanks,
Tom.
 

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/3/2010 2:11 PM (GMT -7)   
Are you sure the stricture is still there? If the stricture was due to inflammation, then it's possible the Imuran might have eliminated it.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1498
   Posted 9/3/2010 4:02 PM (GMT -7)   
We were told her stricture was scar tissue. Today she worked all day, and only had a bagel. She has no appetite for anything else tonight she said. She did tell me that she had a sore stomach last night, but feels fine today, just absolutely no appetite.
I just don't understand how she could go on without eating. 
I guess I'm just worried that it's a bad sign.
 
Tom.

tooth
Regular Member


Date Joined Jun 2010
Total Posts : 337
   Posted 9/3/2010 8:15 PM (GMT -7)   
Even if she's not hungry, see if she can get something liquid down. When she's not eating, she needs to at least keep up with some kind of nutritional requirements like Boost, Ensure, soup, milkshakes or smoothies to make sure she keeps her strength up.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1498
   Posted 9/4/2010 6:55 AM (GMT -7)   
Well she has been drinking enough fluids. Mostly juice and iced tea, As I mentioned it has been extremely hot  weather here in the Northeast. 
She told me last night that when she eats something, she starts feeling full. She will burp somewhat as well. I really just want to be sure it's not some kind of blockage. If it were, then what would cause that?  

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/4/2010 7:21 AM (GMT -7)   
If she suffers a blockage, believe me, you WILL know, as the pain is unbearable. Many of with Crohns also suffer with acid reflux. That will give you an upset stomach, loss of appetite, and cause you to burp alot. Maybe something else to look into. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1498
   Posted 9/4/2010 11:05 AM (GMT -7)   
Thanks Gail,
 
That sounds reassuring. So if there were some kind of blockage, there is severe pain associated? She keeps telling me she feels fine, just not hungry. What exactly occurs when there is a blockage? I'm assuming there would be severe constipation and even vomiting, neither of which she seems to have.
 
Thanks again,
Tom.

Kiwi12
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 9/4/2010 4:10 PM (GMT -7)   
I am sorry your daughter is having a bad patch :(

Nanners gives such good advice ;)

I too have strictures that obstruct but sometimes I just can't face food even if there is nothing really 'going on' just part of being 'unwell' sometimes.

Best support is TLC and keeping up fluids. I find smoothies with yoghurt, banana, frozen blueberries blended to a mix that would go through a seive so provide nourishment without blocking the stricture work well. If it is hot where you are throw in some ice to make is cooling.

If the stricture is blocking, trust me, you will know - abdo pain becomes very severe (like labour pains), bloating makes the abdo tight like a drum (even sounds hollow when tapped), bowls cease to work, often fever then finally constant vomiting of nothing more than bile - this then needs urgent medical attention.

Good luck to you both Tom

Lesley :)

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 9/5/2010 12:07 AM (GMT -7)   
As long as she's not loosing weight allow her to continue as she is. I think her body somehow knows when eating is a bad thing and subdues the appetite for a good reason. It's taken me many years to learn the same thing, believe me. As for a blockage, for me 1) no bowel movements probably the day before as well. 2) belly swells out, 4-5 months pregnant like and becomes hard to the touch. If you press lightly and run fingers up and down the belly it feels like corderoy (hope I came close on spelling). 3) the pain begins as a strong ache in one area of the abdomen for me just above the belly button. then the area of pain spreads around the belly button into one or both kidneys and the back. Can spread to other areas, everyone's different. 4) Finally the pain is a band about 7-8' wide all around the abdomen front to back and the pain begins what I call cyclical. It starts as an ache and steadily intensifies stronger and stronger until for the last 15 sec. its excru****ing and as well the next 15 more seconds as it begins to subside, back to bad ache and the cycle starts again. The cycles vary widely in time from (the worst) every 2-3 minutes, to every half an hour. 5) The total time for a blockage has been between 6- 40 hours and is very brutal to the body. 6) Vomitting can also be a part of blockages but for me when I vomit it usualy means the beginning of the end. Maybe it will stop in the next 4-6 hours. 7) The recovery is around 2 days for every 6 hours of cyclical pain or more. Again this is my experience but I know many others suffer very similar symptoms. I hope this doesn't scare you because this may never happen to your daughter, I truely hope it doesn't, if it does you'll know, no guessing needed. Get her to emergency for treatment.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/5/2010 8:55 AM (GMT -7)   
I agree that if your daughter had a blockage you would know. The pain is unbearable. As for the lose of appetite, I suffer from repeated episodes of gastritis, the first sign for me is a lose of appetite. It took me a long time to realize that when I lose my appetite I am much better off just NOT eating. Food just makes me feel worse, small amounts of liquid and bland crackers are ok, but nothing much beyond that. Just another thing to add to your list of possible causes.

As long as she is keeping up her weight and hydration you shouldn't have to worry too much if this is just a temporary thing. Obviously if this goes on for weeks you will need to speak to her doctor.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1498
   Posted 9/5/2010 5:58 PM (GMT -7)   
Kiwi12, grandpato, Zanne,
 
These responses are great. Thank you all for taking the time to offer you reassureance. 
Thanks for the detailed explaination of what a blockage would be like. Helps me to know what to watch for.
There is one thing that might have caused a problem. A few weeks ago she started taking Vitamin D. The most popular side effects include loss of appetite and abdominal pain. Has anyone ever experienced that? Might be a long shot, but I'm going to have her give up the Vitamin D for now. 
 
Tom.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 9/5/2010 10:29 PM (GMT -7)   
Tom, your daughter should be taking vitamin d as most crohns patients don't have enough. She also should be taking calcium, magnesium, vitamin B-12 and iron. Her Dr should be encouraged to have at least these vitamin levels checked as as a group crohns patients don't absorb things well generally. Calcium is needed to prevent spasms internally as well as external cramps, as does the magnesium but magnesium can cause diarrhea. The vitamin d is need to enable the calcium to be used by the body. Iron is needed to produce red blood cells and so is the b-12.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/6/2010 7:35 AM (GMT -7)   
Tom I am one of the most sensitive people to supplements, and I take Vitamin D3 with no problem at all. I would not take her off of it, it is a very necessary vitamin for us Crohnies as Grandpato2 stated. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 9/6/2010 12:04 PM (GMT -7)   
I forgot potasium to prevent spasms/cramps as well. Also calcium is necessary to build and maintain bone, which is a concern as crohns needs calcium for some reason and will take it from bones if none is avaliable (my experience). If your daughter ever goes on steroids she'll need to increase calcium, magnesium and vitamin d because the steroids need it as well. I don't know why thought, for either instance. Again if she starts steroids she should have a baseline bone density test done to use for comparison with future tests.(simplest test ever, no pain).
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.

Post Edited (Grandpato2) : 9/6/2010 1:15:18 PM (GMT-6)


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 9/6/2010 2:04 PM (GMT -7)   
Since being on Imuran I sometimes lose my appetite for about 2 weeks and then it's back. I find myself only craving white bread, bagels and sweets. It is really odd. I also get very fatigued and just want to rest. Which I assume is from not eating.The smoothie idea is great. I can't tolerate milkshakes during these times.
Dx'd with Crohns 1984
Polycystic kidney disease in 1996

Bowel Resection 2006, Now on Asacol, Imuran, Folic acid, B-12 injections and Enalapril.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1498
   Posted 9/6/2010 4:31 PM (GMT -7)   
Thanks again guys,
 
I figured I'd just try taking her off the Vitamin D for a short while just to see if it makes any difference. Right now, she seems better. Who knows what causes these ups and downs. She has a routine bloodwork tomorrow, so I'll follow that up as well to see if all is okay there. 
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 9:04 PM (GMT -7)
There are a total of 2,734,461 posts in 301,216 threads.
View Active Threads


Who's Online
This forum has 151332 registered members. Please welcome our newest member, Blueswoman.
292 Guest(s), 8 Registered Member(s) are currently online.  Details
DQueen, PeteZa, iho, time2reclaim, Suffering34, sam12, Red_34, Broncofan18


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer