Nervous...nervous !

[Crohn's Mom]

nervous...nervous !

I posted on the welcome board yesterday, and i was directed here to the "parents" spot... Thanks for letting me know everyone who did..much appreciated!

I am very nervous right now. My girl woke up this morning w. a 102.1F temp. In short, she has been very sick with Crohn's for a long time and has been waiting for her surgery which is scheduled on the 21st. Since tapering off the prednisone, in preparation for surgery, she has been progressively getting worse. I put a call in to her GI doc this morning to report the fever and more swelling.
I just received a call from my daughters GI @ the Mayo clinic and he wants us to come up there this afternoon. He said he is calling her surgeon and is going to see about getting her surgery sooner.
I dont know what to expect. Is "emergency" surgery any worse than a planned for surgery?

I'm just scared and venting I guess....thanks for listening

btw..I am new to "forums" all together...since I posted my story on the welcome board, not knowing there was a parents, should I post that here again ? I'm a forum dummy hehe

 

[JenEdwards]

Hi Tracy,

Sorry to hear about your girlie. I hope that they are able to figure out what's going on and get her feeling better soon.

I'm new to here also. My daughter is 13 and was diagnosed last month. I like this forum bc everyone here has kiddos and knows what I'm going through. They have all been extremely helpful and supportive

Jenny

 

[Crohn's Mom]

Thanks Jenny,

I'm sorry to hear about your daughter. We are not new to Crohn's at all, just new to "forums". She was suspected of having Crohn's at 9 years old. She was treated for about a year and then symptom free until 2 years a go, at 16, when she was hospitalized for Mono and viral hepatitis. That's when everything went down hill. We spent the next 8 months going from doctor to doctor trying to convince them that she did NOT have what they were calling "chronic mono"...meanwhile she was not receiving any type of treatment for anything. She was finally diagnosed in Feb 2010 after she was referred to a pediatric Oncologist because the doctors were suspecting Leukemia. The Oncologist, of all people go figure, was the one to say she did NOT have cancer but she needed to go back to see her GI because she probably did have Crohns. He was right! It has been a roller coaster ride for the last 2 years, but I feel like we have finally found some great doctors at the Mayo Clinic here. It is just so hard waiting and watching her get more sick every day knowing that she needs surgery so badly. She is having a small bowel resection, and also they have to remove a large mass of what they say is twisted bowel with many fistulas on the right side; as well as possibly her right ovary because they suspect it is also diseased from the Crohn's.
Best of luck to you Jenny in your journey with your daughter. If I can be of any help to you please just ask. I do understand all too well what it is like to watch our children be ill and feel so helpless. I am so happy to have found this forum...I don't know what took me so long to start looking for support!

 

[JenEdwards]

Wow what a rough road for her and for you. I'm glad they were finally able to figure out what is going on for her. I hope they are able to get her in for surgery sooner. I know it's rough seeing them in pain and not being able to speed up things for fixing them. I'm sure it's a major stress and worry for both of you.

We didn't have that major of a road as your daughter, K was in the hospital 3 times in a years time for swelling of her knee and knee surgery but no one had an explanation for it. After the third visit they finally sent her to a gi dr who diagnosed her with crohns. She's always had some issues with her stomach but nothing major.

Jenny

 

[Crohn's Mom]

who would have ever thought that a knee problem would lead to a dx of Crohns right? My daughter also has bad arthritis from this also, and she was seeing a Rheumatologist, but the other Crohns symptoms came b4 that. But...when she was 9, the reason she was referred to a GI doc was because she had a croupy cough that just wouldn't go away! When he said to go see a GI I was like, hey doc, arent we talking about the wrong end here ?? haha

 

[Connie]

Hi Tracy,
I don't have much experience (thank goodness) with IBD. Its been very quite since my daughter got diagnosed . I will pray for you & your daughter. Knowning that you are being seen at the Mayo clinic, is wonderful. Please update when you can.

 

[DustyKat]

Hi again Tracy! :bigwave:

Don't worry hun, you were right to post in the Your Story forum. Posting there straight up means more of the members will see it. Feel free to post anywhere on forum, if you feel a question is more appropriate somewhere other than here that is fine.

I don't think emergency surgery is any worse as such it's just that sometimes it reduces the surgeons options, as in things like how much bowel they may be able to preserve. Having said that emergency surgery is required for a very good reason and the sooner they get in the better. I wouldn't necessarily look at your daughters surgery as emergency but rather as moving it forward. I say that because the docs aren't going in blindly, they know what they are dealing with and pretty much know what they will find.

Since your daughter has fistulas, and I would say abscesses, then the withdrawing of Prednisone will stop all the masking of symptoms and this is such a horrible time for you both to be going through. Oh man Tracey I know what you are going through and at this point in time I am also going through something similar in the lead up to Matt's surgery. My son isn't suffering like your daughter is but I am like a cat on a hot tin roof hopping around and looking to every sign that he is on the downward slide again! UGH!!! It just leaves you in a constant state of fear and worry doesn't it?

Sending loads of healing (((HUGS))) and (((THOUGHTS))) your way....................

Dusty. :hug::hug::hug:

 

[Crohn's Mom]

Dusty, I hate that I feel like I have found a "kindred spirit" in this; but so happy to hear your positive words. I am sorry your son Matt is now waiting on surgery as well I also have a 13 year old son who may have Crohn's as well. He had an emergency appendectomy last July and hasn't been the same since. He has consistent stomach aches and barely eats most days. With also Having a 16 year old son that basically has been eating me out of house and home since he started puberty, I know that the 13 year old should not only be eating normally, but he should be eating a ton. He has only so far had some blood work and xrays done. Neither really showed much except some constipation. I know better by now though that this awful disease cannot be ruled out, nor dx'sd that easily. After Gab (my daughter) has her surgery and gets healthy then I will be off on a mission to have my son checked out more thoroughly. He is "ok" for now so I need what energy I have to concentrate on the issues at hand right this moment.
I don't think that "hot tin roof" is ever going to cool off in this house ! lol. It's ok though...I made a commitment to my children when I decided to have them to be there for them forever and a day, and that's exactly what I intend to do.
On a final note...Our trip to the GI today with Gab was quick but worthwhile i suppose. She is in no imminent danger as of right now so the surgery is still set to be done on the 21st. I am happy to let things go as scheduled, as I feel like she has the best chance possible that way. Her fever and swelling are caused from the dreaded steroid reduction as I figured.
I am going to have a steroid free party the day she takes her last dose I swear !

 

[Dexky]

You can search the world over and not find a better ally than Dusty!! We're all very lucky to have found her.

As with Matt, I hope Gab stays on an even keel until her surgery. Good luck Tracy!!

 

[Crohn's Mom]

Dusty, is there some where I can go and read your "story"? I would love to

 

[AZMOM]

Tracey - I'll second (and third and fourth and fifth and.....) the Dusty love on here. She is great! And she has definitely "been there".

Lots of thoughts & prayers for you and your daughter. We're glad you are here!! Let us know how Gab is doing......

Hugs,

 

[DustyKat]

Oh hell you two!.......................:blush::blush::blush: :ylol:

Shoot Tracy, I'm so sorry to hear about your son, I hope all turns out okay with him. If only we could clone ourselves!!!


This is the link to Roo's story...............

http://www.crohnsforum.com/showthread.php?t=10591


This is Matt's story unfolding................

http://www.crohnsforum.com/showthread.php?t=14192


And this is the continuing saga with Matt, .........

http://www.crohnsforum.com/showthread.php?t=14388


I'll dredge up this old thread I started a while ago. I hope it provides some comfort to you all and helps ease the loneliness many of us feel, you certainly are not alone any longer....................

http://www.crohnsforum.com/showthread.php?t=10695


See what happens when you get me started! :lol:

Dusty. :hug:

 

[Crohn's Mom]

Thanks for sharing the links

I have enjoyed reading them so much.

I have so many thoughts going through my mind right now, I just don't know what to think.
I actually started digging through Gab's paperwork that I have from through the years and comparing blood results with Matts I'm a dork!

Thanks again for sharing

 

[Crohn's Mom]

I came across a letter that Gab's current GI wrote to her pediatric GI informing her of what his opinion was after meeting her and running some tests. I am going to copy a paragraph from it here because it basically sums up where she is at for the moment...I would appreciate any opinions on it. I don't know what I'm really asking for tho....

"(Gab) has had persistent difficulty with Crohn's for the past year and has essentially been steroid-dependant over this interval. The addition of 6-MP unfortunately did not result in significant improvement. The further evaluate this we performed a MR enterography which showed significant involvement of the terminal ileum and very proximal cecum and ascending colon. There is a large inflammatory mass in this region with fistulization within the bowel loops in this segment. There is no associated abscess. This was also associated with an obstructive component. A colonoscopy was attempted and showed inflammation within the cecum and a complete inability to intubate the terminal ileum again based on her active Crohn's disease. Based on these findings we felt that it would be best to approach this surgically. ...After surgery it would be important to move on to an aggressive agent such as a biologic agent like Cimzia, Humira or Remicade. This wold afford us the best opportunity to reduce postoperative recurrance. Because of the agressive nature of her disease postoperative recurrence is likely without this therapy."

Maybe I'm wondering if anyone can speculate on approx. how many feet of bowel you think she will lose? Do you think a "bag" is likely? And which is the preferred biologic treatment amongst this group??

Thanks everyone
Her surgery is scheduled for the 21st of this month and I get more nervous by the day...I wish I knew exactly what to expect during the surgery as I stay much calmer when I have more information...even if its unpleasant...it calms me

 

[DustyKat]

Haha, if you are a dork then looks like I'm a member of the club too!!!

Do you have access to the MRI enterography result? If not can you request a copy? The report attached to this will set out exactly how much inflammation is present and where. The thing with CD is you will most likely have diseased areas separated by healthy sections of bowel (known as skip areas).

The need for a temporary stoma will depend on the inflammation present.These are only my thoughts but I think the surgeons would be looking at the following:

- How much bowel can they preserve? If there is a lot of inflammation present at the time of the operation they may consider a stoma, this then allows the bowel to rest and buys them time. The aim being to remove the worst area and allow the rest of the bowel to heal. Also trying to anastomose (rejoin) two inflamed ends will most likely lead to breakdown and infection at that point.

The amount of bowel removed will also depend on how many skip and affected areas there are. Unfortunately often times healthy bowel needs to removed along with the diseased because it is not feasible to rejoin multiple segments of bowel. Bear in mind that resection can also been done in conjunction with strictureplasty so some affected areas of bowel can also be preserved this way if it is suitable.

With the biologics I don't know that there is a preferred one but I'm not overly familiar with Cimzia. Between the other two it often comes down initially to which is more convenient, hooked up to an IV for a few hours every 6-8 weeks or so or an injection you give at home once every week or two.

Right there with you with the pre op jitters!

Dusty. :hug:

 

[Crohn's Mom]

@ Dusty..No, I don't have her reports as of right now. I am supposed to be able to access all testing results on the Mayo clinics website, but they have yet to approve our request for access. Hopefully, I can convince them to fix that tomorrow morning.

I was also wondering....has anyone here had their ovary removed (or know of any one) due to their Crohn's at the time of their surgery?? It is a very real possibility that Gab will have hers removed during her resection. Her surgeon said that he is going to try his best to just cut around it; and possibly just the tip of it off. Most likely though he thinks it will have to go.
Also, we have to meet with a urologist on the day of pre-op to discuss them putting in a stint in her urethra? Is this a routine procedure? He said he is worried that the inflammation, or scar tissue, is pressing on her urethra tube and will eventually lead to kidney, and/or bladder problems.
Gab hasn't had her monthly "friend" come visit in a very long time. I am worried that this surgery, along with (just) having Crohn's is going to greatly affect her chances of having children some day. (especially if they remove one of her ovaries )

 

[DustyKat]

Hey Tracey,

Roo didn't have her ovary affected by the inflammation and I don't remember reading anyone on here that has had that complication but there are bound to be others out there somewhere. I know the surgeon will do his best to preserve what he can and women with one ovary usually don't have issues with falling pregnant. As far as her periods go it isn't at all unusual for them to go dormant when your body is under stress, they will return to normal when she is fully recovered. Roo was ill from about the time she turned 13 until her op in 2006 and by then she was 14 1/2. She did not even look like going through puberty until 6 months after op. She caught up very quickly after that.

I think Ari, who has a thread in the General Discussion forum (something like *An operation when you wish you hadn't had it done*), has just been discharged from hospital and had a stent put in, don't quote me on that though! Roo also had issues with her right kidney emptying due to the inflamed ileum pressing on the ureter. She didn't need anything done to it at the time of her op and post op ultrasound showed all had returned to normal. Matt's last CT Scan shows he has the same problem.

I hope you can get the results of her tests as it will give you a better picture of what you are dealing with.

Keep us posted!

Thinking of you.......:hug::hug::hug:
Dusty

 

[Crohn's Mom]

Thanks Dusty ,

I used the search on here and typed just the word "ovary" and got many results...I like that it highlights the key word in each thread/post in the results ! Nifty
So, I got a little information on my question I guess....but haven't seen any that have been about the youngens having to have their ovary removed
I haven't been able to get the MR results from January yet...however I did find the copy of the CT scan done in late November reguarding it.

"...What is thought to be the right ovary measures 4.9x2.0x3.2 cm in size. There does appear to be a 2.6x1.6x1.9 cm hyperechoic area within the right ovary. ..."
Impression:
"Prominence of the right ovary. This likely accounts for the area of soft tissue density on the recent CT examination. There is a hyperechoic area seen which may represent a process such as hemorrhagic cyst. ..."

This disease is driving me crazy ! LOL

FYI: I do know that the cyst was not gone in January (meaning it wasn't just a cyst consistent with her monthly cycle)

 

[DustyKat]

Gee, I don't know Tracy, I don't think that they will know what is going to happen to the ovary or exactly what the problem is until they get in there. Could the problem with the ovary be like the issues with the ureter, all caused by secondary inflammation from the bowel and that's why it is showing as hyperechoic? It's really hard isn't it?

Well I reckon we can happily go crazy together, 'cause I still don't know what Matt's *mass* is! Is it an obstructed piece of bowel or another abscess? Buggered if they know either, it's all just guesswork! :ywow:

:hang: Mom!

Dusty. :hug:

 

[Crohn's Mom]

Dusty..please let me know if I am driving you nuts with questions LOL. I know you can't possibly answer them all for me...I just mostly put it out there with hopes of "opinions" from those of you who have been where we are right now.

On my above post about the ovary and the CT scan...I must correct myself...those were the results from the ultrasound done the day after the CT scan. I really need to get my reports in chronological order...ha.

The CT scan showed "examination of the right lower quadrant demonstrated extensive inflammatory and phelgmonous change which has significantly worsened when compared with the prior examination (2 weeks prior) with marked thickening of the wall of the cecum and small droplets of extraluminal gas in the central area of this large phlegmonous collection measuring approximately 6 to 7 cm in diameter. In addition, there may be a loculated abscess along the pelvic sidewall, deep within the pelvis, measuring 3.6x2.9 cm.
Impression:
"Extensive phelgmonous change and marked thickening and abnormality involving the terminal ileum and proximal ascending colon in this pateient w/ Crohn's disease, significantly worse than on the examination of Nov. 8, 2010. There does appear to be a loculated abscess measuring 3.6x2.9 cm within the pelvis as well. Surgical consultation should be considered."

This is what landed her in the hospital for 10 days in Nov. The doctors couldn't decide if she did or did not have an abscess; and if the ovary was causing other problems or the inflammation from the Crohn's was causing the ovarian problem. They did nothing for either except put her on 120 mg of prednisone to try and save her from surgery because no one wanted to touch a 17 year old girl. Now the doctors @ the Mayo thought she had a much larger abscess; hence the MR enterography. They say she doesn't now.

Let's just say "for instance" .. if....by some chance they are wrong and she does indeed have an abscess in there .... doesn't that lead to big problems if they open her up for surgery and then realize they were wrong ?
Also,I am hoping that the inflammation is just causing problems that are surrounding her ovary and she will get to keep it
She's a mess I know...and I know I will never really have my answers until they open her up....This has just been weighing heavily on my mind with worry ...what if they're wrong ?
arrgghh.

 

[DustyKat]

Oh Tracy, I have no trouble seeing why you are so worried! As to the questions, it doesn't worry me a bit. I enjoy giving the grey matter a work out.

To be honest, in the first instance the docs should have made more of effort to establish if she did indeed have an abscess. The only way to effectively treat an abscess is to drain it or operate. Which leads to your question about what if they are wrong. The fact that there may be abscess there should not pose a problem, they are going in knowing that this may be the case, even if they now say she doesn't have one, so will be prepared.

When Roo had her surgery, which was unexpected, her bowel was perforated and infarcted and in retrospect I have absolutely no doubt that she also had a fistula and an abscess that had burst. The surgeon said to me that when they opened her up she had pus everywhere and was an absolute mess. I hope it is of some comfort to you to know that she had a very uneventful post op period and was in hospital for only 6 days. Roo was in very poor condition prior to surgery and I reckon it took her six months to fully recover but having said that, for most of that time she was a good 80+% which was a vast improvement!

Hang in there Tracy, we're with you every step of the way! :hug:
Dusty

 

[Crohn's Mom]

I agree the doctors should have done more. They were so busy pushing her off from one to the other, afraid because of "liability" and her age. There wasn't a pediatric GI surgeon available, and the surgeon on staff at the hospital did NOT want to cut her unless it was the absolute last resort. So here we have on GI doc (whom we had just met there) rushing in after test results to put an NG tube in and prepare her for surgery, and then the surgeon coming in right after saying NO NO NO we do NOT cut on 17 year old girls unless we have to ! It was quite honestly a night mare in there.
It was so bad that one of the nights Gab was in extreme pain...the nurse worked for 4 hours trying to get a, any, doctor (and there were 8 of them) to prescribe stronger and more pain meds for her. The nurse was so pissed off because none of them even wanted to say "yes" that she came into our room and said "I will probably get fired for this, but I don't care, here is the doctors personal cell phone number..you call him and see if he has the nerve to tell YOU no!" And that is exactly what I did....needless to say she had pain meds within 5 mins. Unfortunately, it took 4 injections of Morphine to help since they had let her sit for so long with nothing.
This was just one incidence, in one evening, in a 10 day nightmare of a hospital stay. Afterwards is when I took things into my own hands and got her in to the Mayo clinic. I know they are very well respected there, but I think my worries are quite understandable considering what has happened this far...:/
I guess it helps a lot now that she turned 18 this month ( at least their stupid liable concerns wont be an issue for her health any more ! )

 

[DustyKat]

WOW! That really sucks Tracy!

Squishy hugs, :hug:
Dusty