Crohn's Disease Forum » Parents of Kids with IBD » It's been awhile and I have a question!


12-10-2018, 10:52 PM   #1
Clash
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It's been awhile and I have a question!

Hey guys! It's been awhile!

C is still stable. He has a scope coming up. He is on Stelara only right now. His weight is pretty good right now.

But this question isnt for him it's for me! So, first the most unbelievable story...

In August, I had a total hysterectomy(on a tuesday). Two days later I was having back pain so I called the doc and she felt it was constipation so had me drink plenty of fluids and take stool softeners. By Saturday I couldn't handle the pain and went to the ER. The did a CT, I had hydronephrosis as my right ureter had been accidentally cauterized during surgery. I was transferred to another hospital and had a stent placed(released Monday morning). By that Thursday I was running low grade fever(urologist said it can happen after stents) and by Friday evening they spiked and I went back to the ER. They did another CT, blood work, blood cultures and urinalysis. The doc did a bag of IV rocephin and a levaquin pill while we waited for results. He said urinalysis showed "slight bacteria but not a raging UTI" blood work and CT were normal but to be safe he sent me home with Cipro. The next day(saturday) the gynecologist decided she wanted to do a pelvic and had me meet her at the hospital. Everything look good but she wanted me on flagyl just in case. Filled it Sunday. Still was having fevers and now severe chills. Monday morning at 6am the hospital called and said my blood cultures had grown something. Two of them had gram negative rods, I had sepsis and needed to get to the ER my urologist was at. So when I got there they immediately did another CT scan because the one done by the ER on Friday actually showed an abscess and more blood cultures. I was admitted and placed on iv flagyl and iv rocephin for a week. A midline was placed and I went home on 10 more days of iv rocephin and oral flagyl. The day after midline removal I went to have stent removed but it was replaced instead because now that the inflammation had receded it was clear that the cauterization damage was more severe than initially thought so I now have to have a ureter reimplant where they will cut out the damaged area and reimplant it in the bladder(next week).

Oh and I cant have any type of opioid pain meds because they cause severe biliary spasms(even tramadol) in me. With the hysterectomy they did an epidural and plan on doing a pain block with the reimplant as well. After that I just took tylenol or motrin.

So for this surgery the day before they want you to only drink see through fluids broths etc and drink a bottle of mag citrate. I've never been able to drink that because the cramping it causes affects my vagus nerve and I pass out. I asked the nurse could I eat thoughtfully and take escalating doses of miralax leading up to the day before the surgery and she said that would be fine. But now I cant remember, its low residue diet I want to eat in the days before right?(she didnt give any specifics as she said I seemed to know what I was talking about).

So what would you all suggest eating leading up to the day before and when would you start this? I was thinking clearer soups, crackers, white bread, pasta.

So sorry for the long post. I guess it's been awhile! I hope everyone is doing well. I'm going to go check in on everyone's threads!
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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
12-11-2018, 12:26 PM   #2
Tesscorm
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Clash, great that C is doing so well!! But, wow, I am sorry that you've been dealing with so much! Ugh!! I've been dealing with health issues all year as well, so I really do feel for you! I hope this surgery takes care of it all!!

Yes, if it's the same prep as for a scope that you want, it is low residue... when S was initially diagnosed and inpatient, he was put on a low residue diet for 5 days prior to colonoscopy (5 days was only because that's when scope was scheduled). So, he was allowed white bread, pasta, cheese, french fries, pancakes and, I think, chicken. (I remember it was all his favourite foods! )

In the past, S also replaced a couple of meals on the day prior to the day of no food with Boost shakes... ie if scope is Monday, Sunday would be no food, Saturday he would already be reducing (not completely) solid foods by having mostly soup and shakes. Seems to make the cleanout really easy the next day.

When is your surgery? Sending you lots of hope that this takes care of things and you can put this behind you!
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Tess, mom to S
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
12-11-2018, 02:47 PM   #3
Clash
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So sorry to hear that you have been having health issues as well! It has been a rough year and I'm looking forward to 2019!

Thanks so much for the info. That is exactly the information I was looking for. C had never fully committed to low residue before scopes that I can recall but I remember it being mentioned on here for easier prep. My surgery is next Thursday so I'm going to start low residue this Thursday. I think I will just follow the plan you stated S used! Thanks again and i hope you are able to put your health issues behind you soon!
12-11-2018, 03:06 PM   #4
pdx
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So sorry to hear about all the surgery complications, Clash, and I hope that your upcoming surgery goes well. I don't have anything to add about the surgery prep, except to say that E's scope preps with just Miralax have always worked fine.

Glad that C is doing well!
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Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
12-11-2018, 04:14 PM   #5
Tesscorm
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S's preps was so easy this last time that he actually went to a friend's place the night before a scope! He just had a scope a few weeks ago, started drinking Picolax (I think??) at 4pm and, I believe the second dose was at 8pm... at 10pm, he said he was going to a friend's place! He said he was fine, everything was already clear! okayyyy?.?.?... he's all grown up now... (Oh yeah, I think he went to play video games!)

So, maybe the low residue and the soup/shake day really do make a difference on prep day?? I hope it makes it easier for you! Sounds like you've had enough to deal with!


Ugh, I've been having back/hip problems... I have a spinal cyst which is affecting the nerve and, in turn, the nerve is affecting my butt/hip/leg muscles. Since Feb, I have seen 3 GPs (mine retired in Aug), 2 sports drs, an anesthesiologist, a rheumatologist, 3 MRIs, 2 ER visits, 3 specialist referrals rejected... and, even with a diagnosis, still NO treatment or even specialist to treat it yet! If it wasn't happening to me, I would honestly assume the 'patient' was making it up! And, to top it off, it's brutally painful! I don't remember what it feels like to have no pain. But, I think I've FINALLY gotten on the right path... am seeing an Intervention Radiologist next week. who can, hopefully, treat it. And, if not, I have an appointment with a spinal clinic Jan. 29... I truly never would have believed that, in a city like Toronto, it would be so difficult to get treatment! Anyway, hopefully, now taking small steps in the right direction...

Update when you can after your surgery...!

Last edited by Tesscorm; 12-11-2018 at 04:30 PM.
12-11-2018, 05:48 PM   #6
pdx
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That sounds awful, Tess. Really hope that you get some relief soon.
12-13-2018, 11:11 AM   #7
Clash
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Wow Tess that sounds terrible! I hope the intervention radiologist can help you and you are pain free really soon!

Thanks for the info about the prep as well!
12-13-2018, 01:32 PM   #8
Maya142
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Wow, that sounds miserable . So sorry to hear you've been so sick Clash. I would definitely eat low residue for a few days.

Have you asked the doctor about the Mag Citrate/Miralax? For some of the surgeries my husband has had, he was also asked to do Mag Citrate to clean out his bowel. Miralax can certainly be used instead, but wouldn't you then have to take enough to do a proper clean out?

I guess I'm just saying that I'm not sure escalating doses will be enough. My daughter has always had to have the whole bottle of Miralax and then some the day before scopes, and that cleans her out. We do give her Miralax daily for a few days before the scope (or Milk of Magnesia) but she still always needs the whole bottle of Miralax.

Low residue definitely makes the prep easier on her - she usually can take less Miralax if she does low residue properly for 2-3 days.

Tess, sorry to hear you are struggling so much. Have they given you any medication for the pain? Physical therapy?
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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
12-13-2018, 01:33 PM   #9
Maya142
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Wanted to add - SO glad C is doing well on Stelara !
12-17-2018, 03:57 PM   #10
Tesscorm
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Maya, I did physio from March to August - no real difference. Started with massage in August (to now), it has helped with the tendonitis in my hip/butt but it can't help with the cyst. And, I think the cyst/nerve keeps aggravating the same hip/butt muscles so, it feels like the massage is just undoing 'new' damage weekly??? IDK...

I'm taking lyrica for nerve pain daily. I take either naproxen or Robax Platinum when I really need something. At one point, I was taking 6 robax per day (and I hate taking meds!) but the pain has lessened (or I've gotten used to it??) so now, I try to keep it to just when I really need help.

Really hopeful radiologist can help tomorrow...
12-17-2018, 05:49 PM   #11
Maya142
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Good luck Tess, hope they can help you.

Clash, any news? How are you?
12-20-2018, 12:03 PM   #12
Clash
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Hey guys. Thanks for all the info. I'm actually waiting in the pre-op room now. The anesthesiologist doesn't want to do a pain block so its just anesthesia and he just gave me a preoperative lyrica. I should be going back for surgery within the next hour. They said I'd come out with a catheter for two weeks and a ureter stent for 6. I'm just hoping to soon put this behind me.

Tess I hope things are coming along for you and you'll soon get the answers and treatment you need for resolution, relief and complete health!


Thanks again for all the info. I actually just did a miralax clean out since I k ow it wouldnt make me cramp like the mag citrate and all went well.

I'll update when I can. Merry Christmas to everyone!
12-27-2018, 03:19 PM   #13
Tesscorm
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Hope all went well Clash.. How are you feeling?

Hopefully, you were able to somewhat enjoy Christmas and are feeling comfortable now!
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