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Crohn's Disease Forum » Parents of Kids with IBD » Fall update on C and me


 
11-18-2013, 06:24 PM   #1
Clash
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Fall update on C and me

Ok so C seems to be doing fabulously, I've been freaking out a bit for a couple weeks because he seems to be looking thinner, so I've been on a "go weigh" binge every time I see him. So his sister came home for the weekend and she had on boots(that every young chic seems to have to have around here), she is 5'7 flat-footed not sure if the boots add much height but C was in his socks and he was taller than her!!! Yay! So excited it is visible, comparable growth, he is now taller than his sister! Never thought I would be able to say that!

I go in for an endoscopy tomorrow. There is a definite pattern, mostly after my last meal of the day but sometimes after lunch, this pressure builds in my breadbasket and I feel the need to burp but can't. If I don't burb then it will eventually lead to tachycardia. When I am experiencing this I can press right below my sternum and it is so tender feeling. After the endoscopy I have a cardio scheduled but it will be a couple weeks for the guy I want. The GP feels this is all GI related. We will see...oh and if I am able to get some of the air up then the pressure and racing heart goes away. Also even though I take a nexium before I get out of bed in the morning, I still have acid come up in my mouth at bed time.

Now for something entirely new...my Dad has been losing weight for months, since August he has lost 17 lbs. He had a colonoscopy and endoscopy done(just preventative screening) in August and the follow-up was last week. The GI(same GI that diagnosed C) was concerned about Dad's weight loss and even though the GP had done a CT scan that came back normal the GI wanted a SBFT(done today-took 3 hours). So I mentioned to the nurse that they were caring for my Dad as well as me she asked who my Dad was. I told her and she said, now is this C's grandfather or step-grandfather, I said my Dad, his real grandfather. She thought that was very interesting, and it turns out from talking to my Mom that for the last 20 years my Dad has been living on immodium for D!! We really don't know what is going on with my Dad and have had numerous tests run,(colonoscopy and endoscopy were normal, internal hemmies and Mom said something at the TI but doc thought due to prep, we'll see if he thinks different now that he knows the connection to C.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-18-2013, 06:52 PM   #2
crohnsinct
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Goodness Clash! Quite a juggling act.

I am so excited C is growing. That is just the best darned news ever! They always say up then out so hopefully he will start filling out that frame!

Good luck tomorrow keep us posted and please keep us posted on dad. Yikes! Immodium for THAT long?
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
11-18-2013, 07:03 PM   #3
Clash
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I know....he grew....he grew and I could tell, I was just all dance around the room excited, which didn't impress either child too much!

Yeah, my Mom told the nurse he used to stockpile immodium. Ummm...sad part of this is I knew this and I think at one time he use to do the same with the px lomotil, because I think that was the first time I heard of it, he called it his "no s$*% pills". Why didn't any of this come to mind when I was discovering the world of CD with Chase. Although, I really don't know what is going on with Dad. The plates of food he fixes now are small in comparison to how he has always eaten, but he will eat desserts 6 times a day, and keeps a glass of water in his hand at all times, I mean it is like permanently attached. I hope we get some answers soon.

I will keep you guys updated on the endoscopy but seeing as every other test I have comes back normal I assume this one will too. The GI nurse mentioned putting me on nexium twice a day since I was still experiencing the acid/bile coming up into my mouth but she said they would be able to tell more after the test.
11-18-2013, 07:48 PM   #4
Brian'sMom
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So encouraging that your son has grown so much!! IT IS POSSIBLE!!!! Yay!! I could imagine you dancing around...love it!

Very interesting about your dad. Isn't it wierd how some people can just 'live with it' and children, well it takes over everything!!

Please do keep us updated on you. I've wondered what the stress can do to us. Acid reflux for sure. I may have missed another thread. I hope you are ok. Do you think your condition is related to your dad...your son?
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
11-18-2013, 08:10 PM   #5
Clash
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Thanks Brian'sMom! I was excited about his growth. It is still not solid ground for me, at the least little symptom, I'll be worrying about everything but for now, it makes me wanna dance!

I went to the GI that dx'ed C(not C's GI now since we switched to Ped GI after dx) before C went due to gastro issues and they did endoscopy/colonoscopy and could only find H. pylori. After treating it, the symptoms most disturbing did go away. Then I started having severe, double over pain in my breadbasket that the GP thought was Gall bladder probs, had an ultrasound there were no stones and then a HIDA scan that said I was low normal on percentage output but they decided that was the problem and removed it, biopsied all was good with it and it looked normal except that it was abnormally long(no idea what that meant nor did surgeon). The bend over double pains remain and come maybe every 3 or so months and now, I have what I described above.

This GI was convinced a year ago it was CD since C had it but he did a colonoscopy and still normal. Now I think he wants to fob this epi-gastric junk off on IBS but I'm not so sure and since I have a bm about once a week I'm not going to dare take levsin as he suggested at the last appt.

The GP feels there is something GI related going on and called the GI and said he wanted another endoscopy so that is where we stand.

From the nurse's convo when I told her they were seeing my Dad she seemed more intrigued about Dad's issues being related to C then she did relating the fact that there may a connection to me. So who knows. The double over pain was and is horrible but honestly nothing compares from this pressure and inability to burp combined with the tachycardia, it really bothers me.
11-18-2013, 08:11 PM   #6
Jmrogers4
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I'm dancing around the room for him as well! That's fabulous.
Hope you get answers for both you and your dad quickly
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
11-18-2013, 08:15 PM   #7
Clash
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I know Jmrogers4, I think growth and weight gain have been both our boys issues. I'm hoping the gain in height has thinned him out again and he will gain again but that part, weight gain, is still slow going and he is eating us out of house and home. I just don't understand.
11-18-2013, 08:28 PM   #8
Jmrogers4
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Well if he is eating you out of house and home, I'm sure the weight will come with the height. He gives me hope that Jack will get there as well.
11-18-2013, 10:38 PM   #9
Tesscorm
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Woohoo on the height!!! So glad to hear it!

And good luck to you!! I do hope they have an answer for you. So frustrating when symptoms are there but no diagnosis, no direction...

And, yes, as was said above... crazy how things can happen gradually and you just 'live with it' and it seems normal. Still upsets me that before S was diagnosed, he had backaches (did start with an injury) and when the pain kept returning (but he did keep playing hockey, which we assumed caused the pain to reoccur), his GP said to give him advils before every practice/game to keep inflammation at bay... there were probably weeks when he'd tak 10 advils that week (btwn practices and games for two teams plus the odd time he'd actually take the advil for pain). How I ever thought this was 'okay' is now beyond me!!! And, now I'll always wonder if it was the advil use that triggered the crohns??? (his GI said 'possibly' but also said the back pain could have been an early symptom of the crohns - so pre-advil use). Anyway, blah, blah, blah ... back to you Clash!!

Good luck!!! I hope you the endoscopy gives you an answer!
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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
11-18-2013, 10:48 PM   #10
Devynnsmom
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I'm so glad C is growing!!
My dad (Devynn's grandpa) lived with diarrheah for years and years. We just always figured it was his meds. He was on a lot of meds for asthma. I did mention it to her dr's when we were first doing our family history.
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
11-19-2013, 08:16 AM   #11
Mehita
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I keep saying, we all need to talk about our poop more! I swear over half my family has Celiac, but will they go in for a simple blood test? Noooooo!

My dad still stockpiles Immodium too.

So glad to hear that he's growing! Woohoo!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
11-19-2013, 10:02 AM   #12
ChampsMom
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Taller than his sister - that is AWESOME!! Is he thrilled to be looking "down" at his sister (every inch counts!).

Hope you get some answers soon. I appreciate you sharing what you are going through. I have been having stomach issues on and off for a while (and I can remember a time when my Mum lived on Maalox!) but do I go to the doctor? NO. (Mehita, maybe I'm related to your family members!! laughs...) I don't think I could handle another thing to worry about... maybe once the doctors decided the next course of action for my little guy (surgery or not regarding his arm) I will think about it (eek...)

Until then - Yeah for C!!
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Shell

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Prayer
Priesthood Blessings
11-19-2013, 11:16 AM   #13
CrohnsKidMom
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Congrats on your son's growth! It's so encouraging to see them gain even a little in stature.

There are a ton of bowel issues on my side of the family, although no one other than my son has been dx'd with CD. My father used to live on a cocktail of Imodium, Divol, and Tums. There's no doubt in my mind that there's a connection somehow with my son's CD.
11-19-2013, 11:38 AM   #14
Josephine
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Great about C, I hope you and your dad get answers and treatment soon.
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Acid Reflux for 15 years med

Sacroiliitis and add to grew list auto immune diseases.

Now on Lansprazole 15 mg And Gavin son 5mg-10mg 3a day.

Crohns from Oct 2007
Domperidone 10 mg -20 mg, Mebeverine 135 mg,
3 a day.
Balsalazide 750 mg 3 X3 a day on going.
Bone protection.

Azathioprine is not working, still waiting to find out what next. Still on low dosage Prednisolone

Mesalamine Enema


No Wheat

English my native language and have characterizes of dyslexia.
11-19-2013, 03:09 PM   #15
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Glad C is growing! What a relief, must be nice for him. Good luck for your endoscopy! Hope they get answers about your dad.
11-19-2013, 10:54 PM   #16
Tesscorm
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How did your endoscopy go? All okay?
11-19-2013, 11:05 PM   #17
Clash
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Everything was normal, as with every other test. Everything went well. My father's SBFT came back normal but he is still losing weight. We really have no idea where to turn for further testing with him.
11-20-2013, 08:23 AM   #18
Tesscorm
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Glad all went well but sorry you didn't get answers (for you or your father). Did the doctors have any suggestions as to what should be done next?
11-20-2013, 08:54 AM   #19
Clash
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I don't think there are any other GI tests I'm going to do. For my Dad, we aren't sure where to go from where we are at. He has an internist who ran all kinds of blood work then sent him for full body CT, then to cardiologist for stress test and something else, then GI who has done endoscopy/colonoscopy and then when he saw the amount of weight he had lost at follow-up appt he scheduled the SBFT. Also, urology where they did a scope up to bladder and neurologist where he had an MRI. All of these tests are normal yet he still loses weight.

Thanks for the support. My issues may be stress, I have a follow up with GP then I guess cardiology.
11-20-2013, 05:44 PM   #20
my little penguin
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have you tried a ph probe or swallowing study?
it could be something when food goes down or up kwim.
might be worth asking
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11-20-2013, 06:19 PM   #21
Clash
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No I haven't had either of those tests mentioned to me. When I was talking to the GI nurse about scheduling the endoscopy, she asked had I had my allergies checked. I have had them checked and twice I had the scope thingy stuck down my nose, last year and 3 years ago. She asked if the ENT mentioned my vocal cords had been swollen or inflamed because they get a lot of patients from the ENT after the scope shows damage by acid reflux but the ENT said mine was normal.

I'm assuming they use air to help the endoscope go down, because today I have had the pressure and tightness in my chest all day and is relieved when I am able to burp, which for some reason I can't just make happen. I mean seriously how is it that I am unable to make my self burp? I've tried all the tricks my teenage son has shown me to no avail which makes the tightness and pressure worse. ugghhh.
11-20-2013, 06:21 PM   #22
my little penguin
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if the esophagus is not working properly or stomach thingy
maybe that is why you can't burp
11-20-2013, 06:28 PM   #23
Clash
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I've thought about that too. I think it is going to take me transferring GI's, this one feels nothing serious is wrong. I have a follow up with my GP about how I am doing and I am going to lay it out for him that I am not satisfied with the answers and am going to consult another GI, see if he recommends anyone.

Oddly, while in recovery the air from the endoscopy created the really bad chest pain(actually the bread basket area) and the nurse gave me infant liquid gas relief drops and it took the pain and pressure right away. But I've chewed gas-x before hoping for that response and didn't get it. I would think they were the same substance, just one is liquid.
11-20-2013, 07:10 PM   #24
kimmidwife
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Clash,
Glad to hear your son is doing well but am worried about you. Taking liquid mylicon which is the drops they gave you in the hospital and are over the counter may be something to try. Liquid is better absorbed and works faster then pills. About your Dad, ask them about leaky gut syndrome. Might be something to look into.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
11-20-2013, 07:28 PM   #25
Clash
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Thanks, my husband is on roll on through mode right now. Since we met our out of pocket he said anything they think might be going on, we should have the test for it. HA!

My Dad I'm really worried about, it is so much weight. I think part of the problem is that my Dad saw the same GP for 30 years back in there hometown so these are new docs, they never saw my father at a healthy(maybe a little heavy on the southern cuisine) 204lbs, he is now 158, he is 6"1'. So still technically not underweight but visually it is staggering. And the fact that he isn't trying to lose weight is what most worries us. I'll ask Mom if leaky gut had been mentioned.
11-20-2013, 07:34 PM   #26
kimmidwife
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Leaky Gut is kind of a new thing so it may not be on their radar to think about. Have they talked about giving him any kind of supplements like boost?
11-20-2013, 07:44 PM   #27
Clash
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His internist suggested boost/ensure and whole milk with chocolate syrup. He was already drinking boost, we have added more and now he is doing the chocolate milk too. But no results in that last month. And my Mom makes, well you know, southern meals. I know it is partly appetite because the plates he fixes are smaller, then he doesn't finish them but he will eat like 8 desserts a day. Ice cream with cookies crumbled in them, brownies and icecream, pie, more ice cream. So he has to be consuming high calories, they are just not sticking or something.
11-20-2013, 07:46 PM   #28
Clash
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Oh and another thing, he constantly has a glass of ice water in his hand and refilling it, sometimes unsweetened tea but mostly water, which has him going to the restroom 30x or more a day. I mean a trip to the grocery store requires a pee before you leave, a pee on the way and then two to three times while your in the store...my Mom is at her wits end.
11-20-2013, 07:49 PM   #29
kimmidwife
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Hmmm sounds like an absorption issue. It is odd we are going through something similar with my Father. He too has had stomach issues for years. Then this past year he was diagnosed with an autoimmune disorder and he lost a ton of weight. We have been trying and trying to get him to gain weight. He won't drink a supplement. It is so rough when our parents get a little older. I worry about him constantly. Another thing to ask the doctor is there are some medications to help increase appetite. That might be something to consider.
11-20-2013, 07:56 PM   #30
Clash
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Would a doc consider putting someone his age on something like periactin or megace? I think I am going to have my Mom ask. thanks for that Kimmiedwife
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Crohn's Disease Forum » Parents of Kids with IBD » Fall update on C and me
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