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08-22-2016, 07:27 PM   #1261
Lucia22
 
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Location: United Kingdom
Lucia22 - has your daughter had an MRE or a pillcam? Sometimes IBD can hide in the small bowel, where scopes cannot reach. There are definitely a few kids here diagnosed with some sort of small bowel bowel imaging.

A false positive with Fecal Calprotectin is quite rare. Have they talked about repeating the test in a few weeks? If it was a false positive, it would be normal then.
She's only had a colonoscopy and endoscopy so far. I will ask about an MRI and pill cam.
No, the doc didn't mention repeating the fecal calprotectin. It does seem very strange, especially as she had a high level of over 600.
Thank you for your advice.
08-22-2016, 07:36 PM   #1262
Maya142
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600 is high! My kiddo who has IBD has never had one that high! I would ask them to repeat it if they say it's a false positive.

My daughter's first set of scopes also did not show a whole lot -- small ulcers and some redness, that's it. But biopsies showed us that it was definitely Crohn's.

Has your daughter seen a pain management doctor for the pain? Or tried a TENS unit?

Hang in there!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-22-2016, 07:41 PM   #1263
my little penguin
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Typically you need h1 and h2 blockers plus luekotriene and cromolyn
There is an MCAS group here
http://community.kidswithfoodallergi...37518039109353

The moms there have lots of MCAS experience
We are new to the testing
Did she have testing done ?
Tryptase and 24 hr urine
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DS - -Crohn's -Stelara
09-18-2016, 03:40 AM   #1264
notaparanoidmum
 
Join Date: Aug 2016
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I'm so glad I found this page 2yrs ago my oldest daughter started showing blood wen she went the toilet but already being diagnosed with ibs they said she was constipated and more then likely tore herself knowing colitis is part of my familys medical history they told me to remove wheat, gluten & rye from her diet to see if it made any difference but it never, so for 2yrs straight ive been put off going drs then. These last few wks thou the amount of blood was to much to ignore & she was crying in pain so we went straight back drs requesting more checks her blood test came bk & her blood work was all over show we was admitted straight to hospital. They found a blockage in her bowel & said the diarohea was an overflow. They re checked her bloods & discovered she was anaemic underweight & developing late in pubety, mouth ulcers weak bones & pains in her joints, flat nails, psoriasis. They have ran all sorts of tests & scans since coeliac, Meckel diverticulum, ulcerated colitis, liver all come back negative but her faecal calprotectin test readings have come back high readings so there is definately, were waiting for the camera test now but due to the blockage in her bowel we have to wait. They told me at 12 she is quite young for crohns so finding this page & kids do get it makes me feel like we are closer to a diagnosis. I just want them to say its this & this is how we deal with it, and that I'm not a paranoid parent after all
so we are finally having the colonoscopy, endoscopy on tue 20/9/16 & wil get answers
09-20-2016, 02:06 PM   #1265
notaparanoidmum
 
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I'm so glad I found this page 2yrs ago my oldest daughter started showing blood wen she went the toilet but already being diagnosed with ibs they said she was constipated and more then likely tore herself knowing colitis is part of my familys medical history they told me to remove wheat, gluten & rye from her diet to see if it made any difference but it never, so for 2yrs straight ive been put off going drs then. These last few wks thou the amount of blood was to much to ignore & she was crying in pain so we went straight back drs requesting more checks her blood test came bk & her blood work was all over show we was admitted straight to hospital. They found a blockage in her bowel & said the diarohea was an overflow. They re checked her bloods & discovered she was anaemic underweight & developing late in pubety, mouth ulcers weak bones & pains in her joints, flat nails, psoriasis. They have ran all sorts of tests & scans since coeliac, Meckel diverticulum, ulcerated colitis, liver all come back negative but her faecal calprotectin test readings have come back high readings so there is definately, were waiting for the camera test now but due to the blockage in her bowel we have to wait. They told me at 12 she is quite young for crohns so finding this page & kids do get it makes me feel like we are closer to a diagnosis. I just want them to say its this & this is how we deal with it, and that I'm not a paranoid parent after all
no longer undiagnosed been confirmed 2day as crohns in her stomach, large & small bowel so av started tube feeding her for the time being anybody elses child had this treatment please
09-20-2016, 02:30 PM   #1266
happy
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So sorry to hear that she is having to deal with this disease, but so glad to hear you have a diagnosis. Here is a link to threads on the forum where parents discuss their experiences with children who have had tube feeding or a diet of liquid enteral nutrition: http://www.crohnsforum.com/showthrea...576#post694576
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Diagnosed with IBD Sept. 2010
Enteral Nutrition induced remission in August 2011
Maintaining remission on Full Elimination Diet
09-20-2016, 03:11 PM   #1267
Maya142
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Lots of kids have here have had feeding tubes, including mine. Do you have any specific questions? Most kids do exclusive enteral nutrition with a feeding tube (only formula, no food) while others are allowed some food.

My kiddo had an NG tube. She learned how to place it herself and would insert it at night and remove it in the morning (so no one at school had to know). She got her feeds overnight. She was allowed to eat, so she ate during the day.

Some kids choose to keep the NG tube in all the time and don't want to insert it every night.

The first night was rough - she was miserable and her nose and throat were sore. We used a tiny, infant tube (though she was 16) - the size was 6Fr. Within a couple days, she was used to it and it was a breeze. She was admitted to the hospital to start tube feeding because she was so malnourished but sometimes it's done in an outpatient appointment.

Good luck!
09-20-2016, 03:23 PM   #1268
Farmwife
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My girl had a feeding tube surgical place in her abdomen.
It's called an AMT Mini One Button.
It's been a life saver!
First she started with a ng tube but her disease is mainly in her upper give area.
We knew this was going to be a long haul so onto the button.
My girl is 7 now but placed at 4.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-20-2016, 05:11 PM   #1269
notaparanoidmum
 
Join Date: Aug 2016
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we have to be admitted tomorrow to start the polymeric diet she isn't allowed to eat anything it is for malnourishment but they have told us the tube is there till we no longer need it in her nose straight to her stomach as she is active crohns at the minute
09-20-2016, 05:22 PM   #1270
my little penguin
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If it's polymeric formula
Then she might be able to drink it orally and not need a tube
Has she tried that brand before ??
I would ask
Ds did een but he did his with semi elemental ( tastes worse than polymeric but better than elemental) peptamen Jr
He drank it all orally no other food
This past summer he did 8-9 weeks of een with elemental formula - neocate Jr and drank it all orally
He still drinks some orally now
The Gi was surprised he didn't need a tube
But definitely worth a try
We pinched his nose
Used a straw to by pass taste buds and made it really cold with ice

Tagging cat-a-tonic she is still doing een with vionex ( elemental ) orally
09-20-2016, 05:48 PM   #1271
Cat-a-Tonic
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As MLP said, I was orally drinking 6 Vivonex per day when I was doing EEN for a couple weeks. Then I started decreasing the Vivonex as I added foods (low-FODMAP) back in. I'm down to just 1 Vivonex per day now, and I actually like the taste. When I first tried it, I thought it tasted like wood chips. But now I like it and find I even have cravings for it! It's an acquired taste, but I acquired it quickly. It's not bad at all once you're used to the taste.
09-21-2016, 05:26 PM   #1272
notaparanoidmum
 
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it has to be tube fed & its for 6wks initially could be longer depending on her in the last 8wks she has lost 5.4kg & is now just under 4st which is low for a 12yr old
09-21-2016, 05:40 PM   #1273
pdx
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it has to be tube fed & its for 6wks initially could be longer depending on her in the last 8wks she has lost 5.4kg & is now just under 4st which is low for a 12yr old
My daughter had really good results with tube feeding. Like your daughter, she was 12 when she was diagnosed, and she was also severely underweight. She used the tube for 90% of her calories for about 8 weeks, and then just used it overnight for supplementary nutrition for another couple of months. She gained 20 pounds during those months of tube feeding, and she gained another 25 pounds and 4 inches of height during the next year after Remicade started working for her.

The tube feeding also helped resolve her abdominal pain and nausea. Hope your daughter has good results and starts feeling better really soon.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
09-21-2016, 05:42 PM   #1274
Maya142
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My daughter also did well on tube feeding. It might take a little while for her to feel better, but it should help. My kiddo was very underweight too and gained 25 lbs with a feeding tube!

Hope she is doing ok with the tube so far.

Good luck!
09-29-2016, 03:01 PM   #1275
Michellejk
 
Join Date: Apr 2016
Location: Wesley Chapel, Florida
Hi everyone! No changes here, my daughter still has 24/7 pain and still no idea why. They did find that she now has a complex ovarian cyst. They are doing a laparoscopy sometime soon to check for endometriosis. However, current Gyno does not think she has that, based on her symptoms, she thinks she has IBD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! OMG!! Almost lost it. Told her we have been there and done that. Then she stated that she seems to have inflammation and maybe it is IBS??? I am so... over doctors! Also suggested chiropractor (which we have already done) and for my daughter to take Tumeric, Cinnamon and go on the Paleo diet. Anyway, we are still getting the laparoscopy done and see what happens. Any suggestions?? We have now had, 2 colonoscopy's (one with inflammation one without), 2 endoscopy's (one with gastritis one without), Prometheus test which indicated her results were consistent with IBD specifically UC, Negative MRE, tried Lialda (no help), Prednisone (little effect) - Gastro decided it was IBS and told me there is nothing to they can do for that. Psychiatrist has had my daughter on 3 antidepressants and since none but the first one (which made my daughter too tired) worked, told us there was nothing more she can do. Infectious Disease, misdiagnosed my daughter as having thrush (she did not), tested her for HIV, cat scratch fever etc (waste of time), Rheumatologist all tests other than ANA come back negative. Gave her a script of lyrica for the back pain, it did not help. General practitioner labs show low Vitamin D, low immunoglobulin A, elevated C-reactive protein, elevated ALT. Have yet to see a neurologist.

Luccia22 - I agree! Let me know if you ever get a diagnosis and I will keep you posted as well.
09-29-2016, 07:35 PM   #1276
Farmwife
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DanceMom does A have low immunoglobulin A?
Sorry I forget?
09-29-2016, 08:05 PM   #1277
DanceMom
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DanceMom does A have low immunoglobulin A?
Sorry I forget?
No, she has low IgG. I don't believe there is a treatment for low IgA.
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
09-29-2016, 09:18 PM   #1278
my little penguin
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Tagging missleopard83
They thought ibd but found out it was endometriosis

Cysts and inflammation can cause havoc on the gi tract as well since they sit side by side
I know Dusty DD was Dx on the operating table so hopefully the surgery will help your kiddo get answers
10-02-2016, 08:01 AM   #1279
my little penguin
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Something else to look at
https://helpforsweetssyndromeuk.word...eets-syndrome/

Since some think of cat scratch disease when it's sweets syndrome

Hugs
10-05-2016, 06:36 AM   #1280
my little penguin
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Michellejk
Have you looked at fever syndromes
http://www.autoinflammatory-search.org/diseases
10-21-2016, 02:56 PM   #1281
Needinganswers
 
Join Date: Oct 2016
I'm looking for answers and really hoping someone can help. My daughter is 7 and her abdominal pain started when she was 4. She has pretty much had daily pain in the same exact spot since it started almost 4 years ago. I've taken her to multiple doctors and had many tests done. The only explanation they have came up with is functional abdominal pain or maybe abdominal migraines. It started right around the time she had a seizure (her 1st) on her 4th birthday. From the time the pain started she has always pointed to the same exact spot when I ask where it hurts. It's in the high right quadrant. She has had upper and lower scopes done and they both came back normal. Most of her labs have came back normal. Once her bilirubin came back high but when tested again it was ok. Her daily complaints are sever abdominal pain and nausea. She often gets nauseous to the point she can't eat. However, she doesn't lose any weight. She also gets frequent headaches that she is on a migraine medication for. She has regular bowel movements, usually 2 times a day. It's not diarrhea but it is more soft than firm. It breaks my heart seeing her in so much pain and not being able to help her! Does anyone have any advise or thoughts? I'm sick of the doctors acting like it's nothing when I KNOW there is something wrong. I feel like she just can't be a kid.
10-21-2016, 03:52 PM   #1282
Maya142
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Has she had any motility testing? Does the pain occur after she eats? I would look at Gastroparesis -- delayed gastric emptying. That causes both abdominal pain and nausea but it's usually after eating. Kids are often too nauseous to eat and sometimes lose weight.

What are they doing for the functional pain? Have they tried any medications or seeing a pain management doctor? There are also pediatric pain programs for chronic pain, which can really help.
10-21-2016, 09:49 PM   #1283
Needinganswers
 
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Thank you for your response! She has had upper and lower scopes done and they both came back normal. She has also had a HIDA scan,x-rays,ultrasounds and a lot of lab. Her GI never gave her anything for the pain. He basically said when they do all the tests and everything comes back normal it's just considered functional abdominal pain. He said maybe she will outgrow it. I'm just not happy or satisfied with that answer. I feel there is something going on and something that can be done to help her. She basically wakes up with her stomach hurting and goes to bed with it hurting. It hurts before she eats and after. It just hurts all the time. I've kept a diary of when it hurts and when and what she eats but there doesn't seem to be any triggers or insight to what is causing it. Being nauseous is why she won't eat when she doesn't. She just says she feels like she can't. She is also very gassy if that has anything to do with any ideas you may have. She has tried taking probiotics and gas x and some other things. Nothing has offered any relief.
10-21-2016, 10:02 PM   #1284
Maya142
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Sometimes something triggers pain -- such as a regular kid virus -- and starts a pain response that the body remembers.

In my daughter's case (she has juvenile arthritis), it was inflammation that was the trigger. But once we got the inflammation under control, the pain remained, because her nerves were so used to the inflammation, that they kept sending pain signals, long after we had it under control (for the most part, anyway).

This is called "amplified pain" or "visceral hyperalgesia" or "central sensitization" -- the body is sending pain signals when there's no real cause for them. It doesn't mean the pain is not real -- it is very real and needs to be treated. It just means it needs to be treated differently.

Pediatric pain programs use many therapies to "re-train" the nerves. They involve PT/OT, cognitive behavioral therapy, biofeedback etc. There are children's hospitals all over the country that have them - Boston Children's is one, Cleveland Clinic, CHOP.

I'm not saying this is what your daughter has, just that it might be something to look into, especially if you cannot find a cause.

They do use medication when necessary - typically medication for nerve pain, like Elavil or Gabapentin or Lyrica. It's usually an anti-convulsant or anti-depressant which in smaller doses, work for nerve pain.

The other thing I mentioned - motility issues - require special testing for a diagnosis, which scopes or ultrasounds or labs do not replace. For example, for Gastroparesis you would need a gastric emptying test to figure out whether she has it. For other kinds of motility issues, there are different tests.
10-23-2016, 12:28 PM   #1285
DanceMom
Senior Member
I would ask to try a medication that treats IBS. If it is functional abdominal pain you still have options. I would also do allergy testing to check for food allergies. You could also do an elimination diet to check for any intolerances. Good luck!
11-11-2016, 01:57 PM   #1286
Heather11
 
Join Date: Nov 2016
Location: Montana
Hi Lucia22 and Michellejk -
I found this page about 6 months ago and have been “lurking” in the background and watching your posts with interest. My daughter has similar symptoms to both of your daughters and has been ill for 4.5 years. She became ill at the age of 11 and has now just turned 16. She has missed most of middle school and high school and she will take the high school equivalency exam when we can get her to feel well enough. We have been able to track the onset of a majority of her symptoms to a meningitis-like/flu-like illness that occurred in 6th grade where most of the school got sick. While it appears that the rest of the kids got better, my daughter and 2 other girls did not. All three girls have struggled for the past 4.5 years with the other 2 girls making steady progress toward recovery and with each passing year, they can do more and more. However, my daughter appears to get better and then she will crash. We are currently in the middle of an episode that began about two months ago that has her at times lying in bed rolled up in a ball in pain. My daughter’s main symptoms are: 24/7 abdominal pain (pain levels of 2 to 8 out of 10; current levels are 5-8), extreme debilitating fatigue (fatigue levels of 2 to 8 out of 10; current levels are 6-7), periodic episodes of blood and mucus in the stool, constipation, acid reflux, some nausea, canker sores, low iron, low ferritin, periodic burning sore throat, periodic cough, excessive cavities in her teeth (15 cavities in 2015 and 11 cavities in 2016), significant neck and back pain 2-3 times a week, poor sleep, poor appetite, and depression. My daughter’s abdominal pain is so bad that she won’t let most doctors probe her abdomen and she is a kid that has always had an extremely high tolerance for pain. She has had 4 colonoscopy/endoscopies, all of which have shown areas of redness and “slight ulcerations” in her colon with the exception of the last colonoscopy/endoscopy which showed a small area of Crohn’s. Her Fecal Calprotectin levels have ranged from 73 to 337 and we are awaiting for the results of yet another one which will determine if she will have another colonoscopy/endoscopy (her 5th). She recently had a saliva cortisol test which showed that her cortisol levels were very low. The jury is still out on that one… One thing that has worked the most for us is managing her sleep and her energy level – i.e. significantly reducing her activities, taking sleep aids, etc. This approach got her pain and fatigue levels down to 1-2 this summer for the first time since she became sick – she actually rode a bike for the first time in years! But then she “crashed” and we haven’t gotten anything to work. There appears to be a direct relationship between sleep quality/quantity and her wellness/energy level the next day. We have also had some help with Budesonide EC for pain but that seems to have stopped working now. There have been multiple procedures, medications, doctors, and diagnoses, but whatever treatment we try, it just doesn’t seem to address the root of the problem. My daughter currently sees a pediatrician, a gastroenterologist, a chiropractor, a naturopath, and a therapist, all of which have added value, but we are still looking for the main cause as to why she can’t seem to get better. My daughter and I are also “sick of doctors” and have walked the “psychological pain” path more than once…. The last time psychological pain was mentioned, I became a bit “spirited” which may have sparked some interest/movement in some of her doctors. My daughter and I are open to the possibility of a psychological aspect/cause but after many evaluations nothing has been identified and therefore there is no treatment in place for that. I wanted to reach out to you both to let you know that you are not alone. While it has waxed and waned at times, I have hope that my daughter will get better and will go on to live a long and fulfilling life. We just take one day at a time….
11-11-2016, 08:32 PM   #1287
CarolinAlaska
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I'm looking for answers and really hoping someone can help. My daughter is 7 and her abdominal pain started when she was 4. She has pretty much had daily pain in the same exact spot since it started almost 4 years ago. I've taken her to multiple doctors and had many tests done. The only explanation they have came up with is functional abdominal pain or maybe abdominal migraines. It started right around the time she had a seizure (her 1st) on her 4th birthday. From the time the pain started she has always pointed to the same exact spot when I ask where it hurts. It's in the high right quadrant. She has had upper and lower scopes done and they both came back normal. Most of her labs have came back normal. Once her bilirubin came back high but when tested again it was ok. Her daily complaints are sever abdominal pain and nausea. She often gets nauseous to the point she can't eat. However, she doesn't lose any weight. She also gets frequent headaches that she is on a migraine medication for. She has regular bowel movements, usually 2 times a day. It's not diarrhea but it is more soft than firm. It breaks my heart seeing her in so much pain and not being able to help her! Does anyone have any advise or thoughts? I'm sick of the doctors acting like it's nothing when I KNOW there is something wrong. I feel like she just can't be a kid.
I'm sorry to hear of your daughter's ongoing pain. For some reason, I wonder about a vascular issue with your daughter. Perhaps she has a malformation that didn't grow well with her and it gets kinked off causing infarction or oxygen deprivation.
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
11-15-2016, 03:56 PM   #1288
Michellejk
 
Join Date: Apr 2016
Location: Wesley Chapel, Florida
An update. My daughter had her laparoscopy done yesterday. The GYN found the following, she had adhesions from her abdomen to her bowel (from the appendectomy), additional adhesions near her belly button from previous surgery. They removed the cyst from her left ovary, but had to also remove part of her fallopian tube because of the way the cyst was wrapped around it. The doctor believes that she has endometriosis but we have to wait for the pathology to be sure. My daughter is currently in pain from the surgery, but my fingers are crossed that she will start feeling better soon.
11-22-2016, 09:17 PM   #1289
Michellejk
 
Join Date: Apr 2016
Location: Wesley Chapel, Florida
Another update. My daughter is 1 week out from laparoscopy and her pain has started to worsen. Went to doctor today. No signs of endometriosis or cancer. Cyst was dermoid. Doctor said she looked around and noticed her colon was distended which is common in IBD and IBS. Recommended for us to see another gastro doc for 2nd opinion. She feels as though she has done everything she can as a gyn. Guess we will wait until after the holidays and see if pain is any better and if not we will continue this frustrating heart wrenching journey.
11-22-2016, 09:58 PM   #1290
Catherine
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Michelle I suggest you get the ball moving with GI now.

I have done a little research on adhesions and their causes as my adhesions of unknown origin have come back.

Adhesions of unknown origin with bowel involvement suggest Crohn's is a possibility.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
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