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09-03-2012, 08:14 PM   #361
Farmwife
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Wow that will be quite the week for her.
I hope all goes well for her and you.
Yes I know what you mean.
We search and search for answers.
Then we think do we really want to know???
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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
09-04-2012, 07:31 AM   #362
Suzysu
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Good luck Poppets mum - Fingers crossed that it all goes well on Thursday - I know how it feels being scared that they will find something and being equally scared that they won't. xx
09-04-2012, 03:46 PM   #363
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Best of luck that all goes well on Thursday!
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and Austin (18)
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09-05-2012, 12:39 PM   #364
poppets mum
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Thanks Farmers wife,crohn's mom and Suzysu, she'll be drinking the pico salax in about half an hour from now.
09-07-2012, 08:32 AM   #365
Tesscorm
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Hope all went well for Amy yesterday...
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
09-07-2012, 10:54 AM   #366
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...so how did Thursday go? Any closer to sorting things out? I sure hope so. Sending warm thoughts and prayers your way. NL
09-07-2012, 11:23 AM   #367
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Melissa went to Hopkins this past Tuesday to see GI. The doc wants her to have a motility study done. It may be possible that because the one area of colon was attached to the pelvic wall for so long that damage has occurred to that portion of the colon so that it may not be able to contract properly. The doc has to contact the adult GI doc who does the studies in order to set it up as he does not take pediatric patients any other way. She will also be informing him about my situation as well as briefing him on Daniel's GI history. Hopkins is starting a new clinic solely devoted to GI Motility issues. Our family would be a good one to research, gather data from and follow. There are several different types of motility studies that can be done. Our goal now is to work towards reducing the meds necessary to keep Melissa's colon moving things along. I took the x-rays with me to show the doc. She said she was glad I did. She would not have called the amount of hard stool in the colon that was directly in front of the coccyx normal. So, that makes three doctors and two parents who disagreed with the radiologist who wrote that the x-ray was within normal limits. If it turns out that there is only a section of the colon not functioning correctly, there are things they can do. My guess is surgically removing that part of the colon? It was really neat having a doc say to me, "I agree with you. I think this is more of a motility issue." I am so grateful that Melissa's docs care so much about her as to order test for something that may not be part of their field. Melissa's GYN was the one who ordered this last set of x-rays. She was floored at the amount of meds required to get Melissa's colon functioning. Her pediatrician listened to what I had to say and ordered blood work. The blood work was what indicated to me that this was more of a motility issue. The inflammation markers have gone down since the surgery.

What was nice about our visit with GI was that she answered any question I had, whether it was about Melissa's issues or my own GI issues. Due to my vast medical knowledge, I get into some very detailed non-laymenís terminology conversations. Mike thinks because the doc knows I understand what she is talking about and doesn't have to spend so much time trying to help me understand what is going on that it frees her up to answer other questions that may not be patient related. Hmm, I never thought about it that way. We have known this doc (19 years) since she was a resident at Johns Hopkins. She is now the Chief of Pediatric GI. She is more than just a doc, she is a friend. How awesome is that!?

Now onto my GI doc visits. The Endoscopy biopsy results showed inflammation in the esophagus, erythema and friability of the antrum compatible with gastritis. Hiatal Hernia in the cardia.

Biopsy: No signs of bacterial infection that could be causing the gastritis. No Barretts disease.

I am currently having the upper GI motility as I type this. The glowing gourmet breakfast was wonderful; NOT!

I will have a colonoscopy next week and a Colon Sitz Mark Study (type of upper and lower motility study) the following week. Iím grateful I have a GI doc who is willing to do what is needed to get to the bottom of things. Hopefully I can get a diagnosis so that the proper treatment can be implemented and I wonít have to have the GI pain any more.

I had the ultrasound of the area where the two blood clots were located back in May. They are still not fully dissolved. Small amounts of the clots remain. Bummer! The tech also did an ultra sound of my implanted port and the surrounding area. Iím waiting to hear back from the doc. Iím sure sheís not going to let me stop the Warfarin. Shucks!

Hubby gets to schedule an endoscopy and lots of other fun things. I think he will schedule his sleep study first.

This ends this chapter. Nothing going on much in my family. LOL! Coming soon, updates onÖ.
09-12-2012, 12:17 PM   #368
poppets mum
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Apologies if this turns into a long post. Yesterday it would have been much shorter but now I am completely confused. So colonoscopy went really well. The only thing I was wondering about during prep was that Amy had just 3 small bowel movements. Afterwards he came and sat with me and showed me pictures of a very nice healthy looking bowel. At this stage he said he was going to diagnose her with ibs. I can't help feeling disappointed about this as I was really hoping he would find an ulcer or something else that it a quick and easy fix. (yeah I know I want to have my cake and eat it So last night I get a phone call from GI doc saying Biopsy results are in and he totally sang the guys praises who does these, saying he is one of the best, they are showing mild/moderate inflammation in her colon um ok. He is now talking about things like MRI and possibly another scope just lower down. Of course I never learn to keep my mouth shut as I had told Amy she would never have to do that again. Now he is not sure if it is indeed an IBD After a near sleepless night he phones me again this morning to say colonoscopy prep could have caused inflammation but we are to go ahead with MRI. My head is just spinning and I don't know what to think. Inflammation explains a lot of Amy's symptoms to me but apparently not to him. One of the other things he did say was the amount of inflammation doesn't explain the amount of pain she is having, huh? The thing is with my kid she seems to like to keep everyone guessing, as we still have never had a satisfactory explanation for her small bowel abscess two years ago.
09-12-2012, 01:40 PM   #369
Suzysu
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my goodness - that is confusing - I am guessing if she hadn't had her previous abscess they wouldn't be so worried about the inflammation? They can't see the whole of the bowel with the scopes so I guess that is why they want to do the MRI, maybe he thinks the inflamation could be worse or showing more signs somewhere they can't see.
I know it must be so frustrating that you still don't have any clear answers but it looks like you are well on the way to getting there with a GI who is taking things seriously.
I hope she gets these other tests soon so that she can get the help she needs. xxxx
09-12-2012, 07:45 PM   #370
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I am glad he ordered an MRI. Danny's scopes always look good (although sometimes red) but biopies shows non-specific mild inflammation in many parts. Doctors do not call Danny's IBS, but also are not convinced it is Crohn's. Good luck!!
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09-12-2012, 08:17 PM   #371
my little penguin
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Jeanne- I know you said he got worse on pred but did they ever consider if he was allergic to th pred . My oldest is actually allergic to it. Has he seen an allergist?
Depending on how he reacted - my sons was not typical
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09-13-2012, 06:52 AM   #372
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Thanks MLP. We saw an allergist, but he was not tested for allergy to Pred. That is interesting point tho .... and I believe there are purer forms of the steroid. Danny had taken pred many times in the past for asthma, but that was several years before this illness so he could have become allergic.

I will share an update now .. Danny has now returned to school, 10 days without missing a day!! (After 3.5 years of home instruction this was huge for us). I'd say he is feeling about 75% better than when at his worst. And that is enough energy to make it through a normal day. Our next plan is to try LDN again, but given his slow improvement trend over the last year his doctor thought it was best to not rock the boat and see if he continues to improve. Danny caught a cold after his first week and had a 102 fever on Saturday. (In 7th and 8th grade it was back to back colds that set him back onto home instruction) I thought "here we go again ..." but by Sunday afternoon he was feeling much better. Whew! Fingers still crossed!! and I pinch myself each day because it is so hard to believe he is doing so well
09-13-2012, 06:58 AM   #373
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Im so glad Danny seems to be improving - and managing school!!!! a massive achievement! - I hope the improvement continues and he reaches 100% improved! xxxx
09-13-2012, 12:25 PM   #374
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Great, great news!!! So glad school is going so well!
09-13-2012, 07:55 PM   #375
poppets mum
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Danny's mom what do they think it possibly maybe could be? Do they ever give you any clues? I am glad my GI is open minded enough to admit that Amy doesn't fit neatly into any one category and for all he knows it could even be some new unexplored IBD. So glad to hear Danny is feeling a fair bit better. I can't believe how strong these kids can be the things they learn to cope and adjust eventually to is amazing. I so hope this continues for him.
09-13-2012, 10:06 PM   #376
dannysmom
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The 2 GIs we see admit they do not know and Danny is a tough case. Other specialists think it is Crohn's. (Infectious disease dr, endocrinologist, rheumis, internist ...) After the Cystic Fibrosis dx (then retracted) ... accepting undiagnosed became much easier.
How is Amy doing now? (We've also been told by a 4th GI that Danny's pain and symptoms do not match the inflammation found IF it was Crohn's)
09-16-2012, 12:01 AM   #377
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@dannysmom. What a fab update! How wonderful to read of Danny's achievements, bless him. May it keep getting better and better and better!

@poppets mum. Have they done blood inflammatory markers or faecal calprotectin? If not I think it would be well worthwhile to see how they correlate with the scope findings. These tests may well return normal results but I think it is a good start before moving onto to more extensive tests of the small bowel which in my opinion they should.

Dusty. xxx
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09-16-2012, 12:35 PM   #378
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Such good news Dannysmom ! I always love hearing when the kids are feeling good!

JJ has been on the Hgh injections for 2 weeks now, and it's going pretty well. He mostly does them himself. The last few days tho his anxiety has creeped back up and he's been having me do them for him because his hands shake to badly We haven't noticed any side affects really. He had headaches the first few days and I was a bit worried, but they have now gone away
He told me yesterday that his shoes are getting really tight ~ of course that's exciting news around here since it's usually the feet that grow first, and then the height follows ! LOL. Other than that, the only thing we've noticed different is that he is eating so much more! That's such a great thing to see tho from a kid that has been eating like a mouse for the last year(ish)
Can't wait to see what the next couple of months bring for him, but so far it seems like the Hgh is beginning to do it's thang !
09-16-2012, 01:44 PM   #379
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YAY!! go JJ!! so glad things are going well!!
09-16-2012, 02:14 PM   #380
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Thanks for the update T!!!

I am so excited for JJ! I'm sorry to hear that he is having some anxiety over doing the shots himself, bless him... but as long as they are working who gives hoot who gives them!

I am hoping, wishing and praying that all continues to go well for JJ hun.

Dusty. xxx
09-16-2012, 03:15 PM   #381
my little penguin
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Danny's mom
Have they looked at mcas
Not systemic masto
This is milder no excess mast cells just ones that miss behave
Criteria just came out a year or two ago

Here are the links

http://www.jhoonline.org/content/4/1/10

http://www.ncbi.nlm.nih.gov/m/pubmed/21035176/

http://www.jacionline.org/article/S0...333-3/abstract



Other thing to look into us eds
Connective tissue disorder
Depending on the type it can cause a lot of what you have seen.
A child I know had many years undiagnoised until finally they checked this out.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002439/

http://www.mayoclinic.com/health/ehl...ndrome/DS00706

The child did have a lot of unexplained Gi issues to the point of tube feeding.
09-16-2012, 03:29 PM   #382
my little penguin
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http://www.medicine.wisc.edu/~willia...ation_2011.pdf

Better paper on mcas
09-17-2012, 08:00 AM   #383
dannysmom
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Thanks for the MCAS papers ... I had only read about ME so find them interesting. Will spend more time rading about it.

We did do genetic counseling for connective tissue disorders about 2 years ago (because my older son is believed to have an unknown connective tissue disorder that contributed to back issues.) It did not yield anything however.

thanks again
09-17-2012, 08:28 AM   #384
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Great news about JJ!! Glad you're starting to see results!
09-17-2012, 08:55 PM   #385
poppets mum
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G'day Dusty. Thanks for replying to my post. All Amy's bloodwork keeps coming back as normal. He did mention her doing a stool test, is that the fecal cal thingy? He also talked about putting her on Pentasa, although he even admitted cos of where the inflammation is ie not in the rectum so probably more Crohn's like, that Pentasa would probably not do much. He did say that if he saw something on MRE that he would be pulling out the big guns. Ok now I don't want her to have IBS cos this seems like no fun at all if that is what she ends up being diagnosed with, at the same time I just can't believe that here we are 2 years on, worrying and wondering if she will get a Crohn's diagnosis. GRRRRR
09-19-2012, 02:50 PM   #386
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Hi everyone!

Freddy had another GI appointment today. The GI thinks he has small intestinal bacterial overgrowth and he is putting him onto a course of metronidazole and has advised a low sugar diet (I thought we already had a low sugar diet but now I have looked into it I realise that we do not!!). I am considering putting the whole family onto an SCD-type diet but am a bit scared and I don't know how we will all cope!!

Anyway I hope all little tummies are behaving themselves!
09-19-2012, 03:06 PM   #387
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My doc is looking at the same. But he said that SIBO is usually a sencondary cause. We need to figure out the main problem is but still treat the secondary. Which is one of the reasons my GP wanted to do this very expensive testing on the stool. I hope the meds work. Let me know how it all goes.
09-19-2012, 04:13 PM   #388
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Damn! - I thought we had found the answer! everytime he goes it escapes out his nappy and runs down his legs - he seems to have toxic poo and now has nappy rash down to his knees!!
Anyway I am sticking well inside my new little bubble in the hope that the antibiotics and new diet sort things out!!
Are you going totally SCD or just trying to eat more natural?
09-19-2012, 04:25 PM   #389
my little penguin
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One another diet is fodmaP
Very low sugar and much more doable.
09-19-2012, 04:32 PM   #390
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Nope Suszu were doing clean eating diet. Talk to crohnsinct about it. She's cornered the market on this.

MLP, What is Foodmad diet? I've heard it mentioned but never looked it up.
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