• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Youngmom

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youngmom

youngmom

hello everyone i am a mom of a crohn's child. she really isn't a child, but will always be to me! she was diagnosed at 18 and is now 28. she was in the hospital about twice a year for flare ups, but did make it through and got a college degree, that she hads never been able to use, but she got it!! she has really had it rough the past couple of years. she has treid many medications, but none seemed to be working. she has also been through many doctors who don't have a clue! (we are from a small town) as i am sure many of you have, too! she ended up with a bowel perferation last year in feb. was in icu in our hometown for a week. when they wanted to do another surgery we (her dad and i) put a stop to it. she was sent to the cleveland clinic and had another surgery to repair what they had done and had to have a illostomy.

because of the perferation she had infections everywhere. we thought we were going to loose her many times. she was in icu in cleveland several times and ended up being there for about 4 months! everytime she would seem to get better another infection would come out. her stomach was actually open for all this time with a wound vac. the nurses and doctors at cleveland were amazing and i know she would not be with us today if it were not for them.we also had her (and her 1yr old son) move back in with us and she had home health care all summer long. finally in october they reversed the illostomy and sent her home. (4hrs away from cleveland) her gi here refused to treat her when she was in the ER! Since she had finally gotten disability (after a 2 yr fight) and was put on medicare instead of (ohio) medicade she was able to see her previous doctor in indiana.

he is a god sent, but she has had recent problems again. he put her back on humira again. (a previous no clue doc took her off right before she ended up with the perferation...hum?) anyway she is in the hospital now and they are going to up the humira to weekly shots instead of every 2 week. they are also trying methotrexate which is new for her. we are hoping for remission soon!
 
M

mickey

Sounds like she has been thru the ringer! Bless you for helping her and her son. My prayers are with you and hope your daughter does better!
 
tots

tots

Location
Austin, Texas
I am sorry for what your family is going through!
She is very lucky to have you, I was your daughters
age when I was diagnosed. I was so alone! My husband
worked nights and my parents lived on the east coast to
my west coast!

I wish your daughter a speedy recovery!

Lauren
:rosette2:
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum. Your daughter (and you) have gone through so much! You have definetly come to the right place for really helpful advice and more inportantly support. I hope that the new treatment regime does the job so she can start to feel better again, do keep us updated on how things go.

Sending best wishes to you all

AB
xx
 
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youngmom

thank you for your kind words, yes it has been quite a rollar coaster, but we will get though it together! i have been reading this forum for awhile, but never posted until now. doc has said she will be in for 4-5 days until they get things under control. will keep you updated. thanks again if for nothing else just to allow me to talk to others who know what it's all about. the questions others ask get very annoying! i know they are just concerned, but sometimes i just want to say...well i'm sure you all know! :0)
 
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youngmom

Hard to Digest!

My daughter was diagnosed with Crohn's 11 yrs ago. She has been in and out of the hospital so many times I lost count. She had a perferation 2 yrs also which kept her in the Cleveland Clinic for almost 3 1/2 mths. She was recently sent back there as her GI closer to home didn't know what to try next for her meds. She has been on many many many with none working for her. So when she landed in our local ICU (They thought she was addicted to pain meds...) I insisted they send her back to Cleveland. When she got there she was tested for C Diff and was positive. (Think she has had this since Dec. and never tested) anyway the GI from Cleveland yesterday (she has been in for 3 weeks) said that he doesn't think she has Crohn's...he thinks it is CVID...so they are testing her for it this week! I just don't know what to think...:ack:
 
David

David

Co-Founder
Location
Naples, Florida
Wow, you're going through so much, you poor thing :( I can't imagine what it's like to have to watch a loved one go through so much.

*hugs*

Why do they think it is CVID and not Crohn's disease now?
 
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youngmom

They didn't think the "ulcers" in the bowel looked like Crohn's, plus all the medication she has gone through with nothing working to give her any relief. Since I posted this she was put in the ICU when she became unresponsive after yet another huge bloody stool. She has had 6 bags of blood in the last 4 days! And 3 colonoscopies in the last 5 days! They did another CVID test today and started treatment for it. The immunologist today said again we don't think you have Crohn's! So there are now 3 specialists who don't think it is Crohn's. (GI, C. Rectal and Immune) She was sitting up talking and actually had a brown "mostly" stool today. They also have decided she has fibromyalgia which is causing the pain and have put lidacane (sp?) patches on the stomach for that.
 
David

David

Co-Founder
Location
Naples, Florida
She needed 6 bags of blood in the last 4 days, has ulcerated intestines, is undiagnosed, and they're pawning her pain off as fibromyalgia?
 
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youngmom

Pretty much sums it up. The CVID test came back with one positive, but needs two positives. So they are "looking outside the box" meaning testing for rare diseases. They are all still saying it's not Crohns. (because of the way the ulcers look) She is finally out of ICU and eating, but had some blood in stool today still. She is getting dalaudid every 4hrs along with the patches.
 
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youngmom

Yes they did and C Diff test came back negative. Now they are talking illostomy to rest the bowel (Doctor change today!) and test tissue when they go in for the surgery. No surgery for a week TPN to build her system up. At least the surgeon is the same one as before and she (we) know and trusts him. (he is #2 man here in Colorectal)
 
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youngmom

well sounds like surgery sooner she passed out again last night, another transfusion (blood) and more magnesium. stopped TPN because when it started last night was when she passed out. going to attempt it again tonight. GI this morning said we need to go forward not sure waiting (for surgery) will benifit. Full team meeting tomorrow. This would be alot easier if we didn't live 3 1/2 hours away. i hate it but we have to go home today to get things caught up. then back up when we hear what their new plan is...
 
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youngmom

surgery still next week surgeon said... no she needs to be on tpn for a week to build her up first. started tpn last night with no problems so far.
 
my little penguin

my little penguin

Moderator
Staff member
Have they looked at behcets since it can mimic crohn's in alot of ways ?

Hope they get to the bottom of it for her sake.
Gastrointestinal (GI) tract features include abdominal pain or blood in the stools, which results from lesions similar to those seen in the mouth and genital area. These lesions can be more dangerous in the GI tract because they are likely to bleed and/or rupture the intestine.
Click to expand...
http://my.clevelandclinic.org/ortho...ic-behcets-disease-what-you-need-to-know.aspx
 
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youngmom

IDK little penguin, I know that they have tested everything they can with blood and are getting tissue to test during surgery Monday. She is doing better and is ready for the surgery. Please say an extra prayer for her Monday morning.:Karl:
 
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youngmom

yesterday surgery went well, she is feeling better, now has surgery pain but is better than before. haven't heard about tissue tests yet assume it will take some time. going on week 5 in cleveland clinic...we are all so ready to go home!
 
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youngmom

She is doing better everyday, she has some pain, but from surgery. Incision looks good. Surgeon said he got all active ulcers and fistula. And one fistula that was just beginning to form. He is sending all tissue to be tested for everything they know of. He put in an ileostomy that will be reversed after 4mths. He did a colonoscopy before he finished to make sure he got everything. She actually looked better today than she has for quite awhile. She was up walking and even had some clear liquids. One day at a time! Thank you for the support!
 
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youngmom

Yes! we are home! everything going good! We have no answers yet as the test results are not in. But we are home!! Woo Hoo!
 
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youngmom

follow up with nuro thursday...her hand went numb while there (she can't move wrist, thumb and first finger). calling for follow up appt with surgeon tomorrow. she is on some meds predinsone, valium, percacet,(sp?) oxicodone, and nucynta for right now.
 
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youngmom

Well, spoke to soon She had to be taken back to Cleveland yesterday afternoon by squad. Pain and vomiting. Surgeon(who was out of town when sent home) said she was sent home to early and on to big a dose of prednizone. (I think his "fellow" is going to get an ass chewin) If she is not feeling better in a couple of days he is going to run a scan.
 
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youngmom

So they did the scan yesterday and found fluid around the liver, shortly thereafter they put in a drain. She is in alot of pain especially from drain. Feeling very depressed.
 
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youngmom

they found fliud around the liver and put in a drain shortly after. still waiting on the tissue tests. she was up walking around some today and is on regular food. one tiny step at a time. hopefully home for Easter...
 
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youngmom

Drain out... no more antibiotics...stoma output still to high...can't go home for fear of dehydration...looks like Easter will be spent in Cleveland this year. :(
 
Artisan105

Artisan105

Yondaime
oh geez... hang in there. Let's hope this is the worst of the storm before a full recovery. I bet your heart is breaking for your daughter. Crohn's or IBS touches the whole family. My dad is a former military man- very strict and shows little emotions. However, after my internal bleeding 4 years ago, I lost so much blood- 2-3 blood transfusions a day, throwing up bile every 10 minutes, went into a coma for 3 days. While in the ICU, bearly awake and drowsy from the pain meds, I saw my rigid father cry for the first time. I knew then of how much he cared for me even though he never really showed it before.

Just keep showing your love and support to your daughter. This will help her tons! :] Praying for you.
 
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youngmom

No diagnosis. Nothing more they know of to test for. Getting a port in tomorrow then maybe home. She will have to be on IV fluids at home. Still plans to reverse ileostomy in july. Frustrating! :ybatty:
 
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youngmom

:smile: home last wednesday night, on nightly IV fluids with potasium, magnesium, and sodium, many stool hardners, percicet, and oxicodone. daily visits from home health nurse. (who is a friend of the family) so far so good.
 
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youngmom

:ymad::ymadWell she got to be home for about 10 days. Went back last weekend with a possible ileus and dehydration again. They can't figure out why the stoma is continuing to be so liquidy. So frustrating...I feel horrible, when she said she was going back to ER I got mad at her and yelled. Home nurse was just there on thursday and everything was ok, I thought she was panicking. I just wish she could have a little bit go her way for once! Still no diagnosis...ugh! :ymad:
 
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youngmom

She is home and on TPN nightly and fluids when needed. Still struggling. Finally pain meds dr. Put her on a patch, but of course waiting on pre-approval from insurance. He said since she is not digesting anything pain meds by mouth not doing anything...makes sense to me. Now if the insurance ppl will get their heads out of their a.. Maybe she can get some relief. I guess if not they will have another hospital bill to pay. When will they learn if docs prescribe it then there is a reason for it!! :yrolleyes:
 
mccindy

mccindy

Location
Minnesota
Home for a few weeks sounds like a great improvement over the couple of previous months! Hoping for you that today's appointment goes well and perhaps some good diagnosis news..... keep us posted! Fingers crossed!
 
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youngmom

Re-connect surgery on the 17th. pre-op and GI appts. next week. He (GI) better have a plan of action or they are going to have one angry mom and patient to deal with! Oh yeah, and on top of all this they (JFS) cancelled all her benifits because she was not able to attend appt to re-apply!! (Appt was in March while she was in the hospital) So we had to have state hearing wich was a joke. But, to end on a positive note I am now a retired teacher! I will miss the kids terribly, but will have more time to help with the family needs.:thumright:
 
mccindy

mccindy

Location
Minnesota
wow. Just wow. I can't believe they would cancel her benefits due to her missing an appointment when it was because she was in the hospital! Bureaucracies piss me off! I'm glad to hear you were able to retire and help out. Congrats!
 
my little penguin

my little penguin

Moderator
Staff member
SOrry to hear its behcets

So glad she has a dx so they can move forward and try to get her to a healthy point soon for her sake and yours.
 
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youngmom

:smile:Surgery went well Monday he said all looked good. Everything was going good until yesterday. Had a bad day with vomiting and pain. Today is much better they took food away and put her back on TPN. They are going back to Crohn's. not sure what the plan is as far as when we finally get out of here waiting on the GI to appear and tell us.:smile:
 
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youngmom

We are back to no diagnosis and no treatment plan. Still in hospital GI wants to treat as out patient. I feel like everyone has given up.
 
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youngmom

Starting Cimzia as soon as insurance approves. I think moma got through to the GI. He wanted her to wait and get sick again for more diagnostic testing. Not gonna happen! IBD is IBD even without label... treat it! Thank God the surgeon agreed. (Who just happens to be the number2 doc in rectal surgery at the clinic) I Pray this one works. :kiss:
 
mccindy

mccindy

Location
Minnesota
Sonds like a lot of good things are happening for you lately! I'm glad to hear about improvements, and weight gain. And less pain. Hope thing continue to stay great for you!
 
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youngmom

Well we are still doing ok. There have been some problems, but nothing like a year ago. We are now planning a Benifit for Crohn's research and campaigning for medical cannibis to be on the ballot in Ohio. She has been told it could be the answer for her. Cimzia seems to be keeping her out of the hospital, but not really improving her disease. She is just sustaining not getting better, but no worse either. I just thought I would update everyone and hope you are all doing well.
 
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