# Stem cell transplant journey beginning



## jmcbrid2

I am officially starting my stem cell transplant process tomorrow. I want to share as much info as possible with everyone so please ask as many questions as you want!! 

I just got to Chicago today. I'm exhausted and in a lot of pain and to top it off my wisdom teeth are killing me. My sister is with me since she is my stem cell donor. I'm having tons of pre transplant testing tomorrow. I will update you as I go through it!


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## Moe.

Good luck. Hope it goes well. 
Are you doing the donor stem cell transplant?


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## chrisnsteph1022

Oh wow. Excited to follow your journey! Good luck!


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## jmcbrid2

I just did a pulmonary function test to check for bronchitis, asthma, etc. it went well. I'm now getting an echocardiogram. I will also be having a chest X-ray, EKG, labs, and an appointment with Dr Barrett, the GI doctor. 

Ive been getting very dizzy lately. My blood pressure is normally low but is now sky high and my heart rate is up. The nurse doing the pulmonary function said it was anxiety. But I'm going to mention it to the doctor to be safe. And my wisdom teeth are killing me. Something else I'm planning on mentioning. 

Tomorrow I am scheduled for an MRI and appointment with Dr Burt's nurse. Wednesday I'm having an appointment with Dr Burt to go over all the test results, etc. 

My sister is my donor, however she has IBS. IBS isn't an immune disorder so it shouldn't be an issue but she is having to go through extensive testing to make 100% sure it's not Crohns. This week she is having labs, an MRI, an EKG, a chest X-ray, vein check, colonoscopy, and appointments with Dr Barrett and Dr Burt. If all goes well, we will fly home, she will take self injections of neupogen(probably didn't spell that right) from August 20-23 and will have her stem cells harvested through her blood via a vein in the neck August 23 and I will be admitted for my stem cell transplant on September 4, 2012. 

If there are no complications, the transplant should only take 3-4 weeks and I should be home by the end of September. I will start chemo on September 4, 2012. After 8 days of chemo, they will bring in the stem cells. I will then be monitored for their regrafting for 10 says. Then within a few days following, I can go home. I will have to watch where I go and who I'm around for about 6 months. My new immune system should be up and running no longer than a year and they should be able to determine if it was a "success": the donor cells are showing up in my body. However, the donor cells don't have to present for me to be feeling normal again(if I can even remember what that is...) but it will indicate that the Crohns will give me issues again in the future. However, I will be able to start the medications again and they'll actually work because I won't have the antibodies against them in my body anymore. I have so much faith that God is going to make this work for me. How else would it be working out so perfectly?  I mean my insurance approved all costs first time and with only a 25% chance my sis could have been a match, she was! And the insurance is paying for her part too! And we got all the donations we needed to cover traveling expenses! You can't deny that it's meant to be!


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## David

I'm really excited for you!  I'll be watching and rooting for you   I'm also adding your thread to the stem cell thread so others can watch.  Thank you for keeping it updated and good luck!


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## KayleighMeek

I find this treatment option so interesting and I really hope it works out for you. I will be keeping my fingers crossed for you. Please keep us updated x


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## deb123

Fantastic news!  I shall watch your posts with great interest, and excitement.  I wish you the best wishes in the world, and hope that it works for you and for all of us who suffer from this pain in the ass disease.

All the best 

Deb


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## Clash

Such great news that everything seems to be falling in place for this transplant to happen! I hope it all works out for you!!! Sending prayers your way for this treatment to do the job! I, too will be excitedly awaiting your posts!


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## effdee

Best of luck, Jenn! I'm really excited for you. Feel free to get in touch again if you want!


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## SherryLynn

Im excited to follow your journey, thanks for sharing!


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## jmcbrid2

Ok so I saw Dr Barrett today. My sister is anemic so they're doing a ct scan on her tomorrow to be sure there's not a sneaky version of Crohns in her system. I hope not. If there is, I'll have to go on a donor list. I talked to him about my dizziness and he said he thought it was all the medications im on. The whole time I was in the appointment I was having hot flashes and throwing up blood. 

I've been throwing up blood for 2 months and have been the ER back home 4 times and my local GI. The hospital did blood work and kept telling me it's probably a bleeding ulcer but my labs were fine so they put me on Prilosec and sent me home every time even though I knew I was losing too much blood between that and the intestinal bleeding. I just had a blood transfusion in October 2011 because my hemoglobin was a 6. I knew something wasn't right this time and no one listened. Turns out they were doing the wrong test!! It's only an 8! Seriously?! And he tested for c diff. Even though I tested negative at home, he wants to do a more sensitive test so I should know by tomorrow. 

My wisdom teeth are cutting in bad. I can barely eat from the pain. Dr Barrett said if its abcessed they'll cancel the transplant until I have them cut out. He looked in my mouth and said they don't look infected, just like theyre coming in. He said they may cut my gums to allow them to grow in. He set me up with a dentist appointment in the morning and is going to argue to my insurance that it's a pre transplant expense since I don't have dental coverage. Pray it's not infected. I'm so ready for this transplant. I'm so tired of fighting so hard. 

I have the dentist appointment, MRI and an appointment with Dr Burt's nurse tomorrow.


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## Moe.

Hope your going to be all okay.
You've got so little left to go.


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## jmcbrid2

Well I have 8 sudden cavities after never having a single one in my life. And inflamed gums and I have to have my wisdom teeth removed ASAP. Good news is it won't affect my transplant whatsoever! But I may have to stay in Chicago or come back next week. Very frustrating. The dentist is talking to the oral surgeon now about scheduling. Cross your fingers!!


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## Moe.

That is some pain your going through.
Just remember although you feel like your getting jabbed in the mouth. 
Same time your jabbing one to the crohns .
Its good that its not going to affect your transplant.


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## jmcbrid2

So I do have infected wisdom teeth. It still won't affect my transplant though. They are putting me on antibiotics for a week and cutting them out next week. Frustrating but better than it messing up my transplant! About to meet with dr burts nurse and then it's off to the MRI. I may not post again until tomorrow since this will probably have me pretty sick!


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## chrisnsteph1022

Ugh. Sorry to hear about the dental issues. I hope they can get them cleared up quickly!


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## Gwen pippy

Good luck honey, very excited to hear your news, I will say a prayer those bold wisdom teeth behave. keep us posted as much as you can.
Gwen xxxxx


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## Avw

Hi, I just found your thread and wanted to say a quick 'YOU GO GIRL' for getting everything going so quickly, getting your insurance approval, getting your donor match, and getting past all the hiccups! I am scheduled for my evaluation with Dr. Burt on September 10 and am staying for some pre-testing, also bringing my brother in hopes that he will be my donor. 

Best of luck to you in the coming days/weeks... You will be _better_ than new in no time! Message me anytime you want to talk... I'd love to hear from you and hear all the gory details LOL! Talk to you later! 

  -Ally


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## jmcbrid2

So I had the MRI and it turns out me in tight spaces equals panic attack. Bad news. I met with Dr Burt's nurse yesterday and she said there was some kind of mistake and even though my insurance gave the hospital an approval code, it wasn't actually approved. Then not even a minute later she gets a call saying Tricare went ahead and approved it and it's a go. Then I go to my appointment today with Dr burt... They lied again and they decided not to approve it even though they sent the nurse an approval code and an approval email. So as of now, the transplant is canceled. I'm at a loss. I'm a wreck. I need this so bad and now I don't know what I'll do. Please pray!


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## Moe.

Im from the other side of the world. Could you explain 
How can u be turned down by ur insurance. 
I feel awful for you. But isn't there some way to get 
What your after?
There toying with ur life by doing this. 
I do not know ur insurance conditions but I'm sure lots of
Insurance companies won't accept a 125000 quote. 
You need to bash em through the phone


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## Avw

Oh my God! I hate insurance companies so much!! I would be at a total loss right now. Just sit tight though. From what I hear Dr. Burt's team is AMAZING with the insurance stuff. It will get worked out! Just hang in there!


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## jmcbrid2

Moe. said:


> Im from the other side of the world. Could you explain
> How can u be turned down by ur insurance.
> I feel awful for you. But isn't there some way to get
> What your after?
> There toying with ur life by doing this.
> I do not know ur insurance conditions but I'm sure lots of
> Insurance companies won't accept a 125000 quote.
> You need to bash em through the phone



We do not have universal health care yet. Our president is putting it in to croon now and my insurance is through my husband. He is in the military. And unfortunately military insurance here sucks sometimes. When they approved it, they thought they were approving a conventional, less expensive Crohns treatment. Then after I started the testing, they realized it was a stem cell transplant and cost more than they anticipated so they backed out. Or at least that's what Dr Burt's nurse thinks happened. I'm so scared and stressed. It IS my life they're playing with. It's money to them, it's survival to me. The doctors have already said if something doesn't happen soon, I'm either going to die from complications and staying so sick and malnourished or I will develop colon cancer and die (they're so blunt with me lol). It's really unethical what they're doing here


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## Moe.

I hope it gets resolved soon.
Just hang in there. The nurse will get back to you
Soon right? 
I sure hope so. Very unethical. 
I'm sorry for all the pain ur going through.


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## jmcbrid2

CookieDr Burt just called. My insurance didn't approve it but the hospital is taking full responsibility and paying for the transplant. I think it's bc I'm the first Crohns patient with my siblings cells and it's crucial for the research and that reflects on the hospital


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## Moe.

Congrats congrats. 
Real happy for you that it went through. 
2 more months and I'll be crohn free


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## SherryLynn

wow that is fantastic news for you!


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## Avw

That is AMAZING! Congrats!! I knew his team was good... but not *that* good!! So you have a two week wait until you return for the actual transplant process to begin right?


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## Lawyerboy

Thats great! I am too waiting for a stem cell transplant. Wish you all the best!


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## jmcbrid2

Yep just a few more weeks. I just got out of my endoscopy. Still out of it. Waiting to see the dr now


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## jmcbrid2

Oh forgot to mention I've been vomiting blood for over a month and now I'm having black coffe ground stools and fevers etc. so I was admitted at Northwestern in Chicago last night. Had an endoscopy this morning...waiting for results


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## jmcbrid2

They couldn't find where my stomach is bleeding so I'm here one more night then they'll check my labs on the morning and go from there. I'll probably get to go on home

Great news: my sis is autoimmune disorder free so it's all a go!!


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## CrohnsMonkey

That's good news that ur sister qualified. How would I get enrolled into a transplant program?


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## jmcbrid2

CrohnsMonkey said:


> That's good news that ur sister qualified. How would I get enrolled into a transplant program?


You would need to get your local GI to refer you to Dr Richard Burt at Northwestern. They will run tests and do an evaluation and determine your candidacy for the treatment. Please read the beginning of this thread that explains the eligibility requirements. If you don't meet them, don't waste your time because they are very specific. But if you do meet them, ask your doctor to refer you. Look at his profile on the northwestern memorial hospital website


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## levi

You said you had to have an EKG. I have a condition known as Wolff-Parkinson-White which is two extra electrical pathways in the heart that can cause rapid heartbeat. It bothered me and was diagnosed during high school. This was ina period when I would play basketball and also drink an iced coffee drink every single day. It never bothers me anymore. I can jog 3-4 miles and still not even have an 'episode.' Do you have any idea if this would be the type of thing that would disqualify someone?

I would hope not, especially considering I haven't had an episode of it in over a decade.


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## effdee

levi: For the most part, all of the testing is to make sure you're healthy enough to endure the chemo without any additional risks. It's really to make sure you don't have an infection and that you aren't more prone to possible infections while neutropenic. I'm not familiar with that specific condition, but I hope that helps! Also, you could probably get in touch with Dr. Burt's office and get an answer to that from one of the nurses.


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## jmcbrid2

Ok so I just got home from the hospital. My blood counts are very low and I haven't been eating. I gotta be careful or it's back to tpn for me. I won't post for another week when we go back to Chicago to harvest my sisters stem cells. I need time to rest.


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## SherryLynn

how do they "harvest the stem cells". I mean is it a blood draw or somthing more complicated?


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## jmcbrid2

Nope just a blood draw. They put a catheter in the donors neck and draw blood from basically a dialysis machine which separates the stem cells from the blood. It's a one to two day process but virtually simple!


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## deb123

Thanks for your posts, i am reading them with great interest, in the hope that i could get treatment in the future.

Take time to rest, and recouperate.

Good luck and best wishes to you


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## jmcbrid2

Even though I won't have updates please feel free to ask any questions you may have! No question is a bad one! I can give you all the info I have to offer


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## KayleighMeek

Just wanted to let you know I'm thinking of you and all of the horrible things you have been going through. I really hope this gets started soon for you and gives you the releif you desperately need x


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## jmcbrid2

I've been battling insomnia too for a year and I haven't slept in over 30hrs and I'm exhausted to the point of breaking down in hysterics but I can't sleep. Help. Ugh. I take ambien but I'm having to babysit my nephews, all 3, today with my grandmother and even though I'm exhausted and screaming in pain and throwing up bad, in havin to stay up with the older 2 while my grandmother is napping with the baby. Sooo tired!!


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## raechel

I just found your thread!  I hope everything went smooth with your wisdom teeth removal today. Are you going to be updating this thread every step of the way, or your blog? I wanna make sure I head to the best source to stay up to date! Hugs!!


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## jmcbrid2

Wisdom teeth removed today. Just got out of surgery. They didn sedate me Bc I had to do it alone and bc they needed to do it quick and not with a surgeon. But they ended up having to get a surgeon bc I wasn't numbing completely. I was laying there in tears and almost screaming. I had some bone and fibrous tissue covering the tooth so they had to cut it off too. That was terrible. I'm at the pharmacy getting Narco for the pain. Praying for a pain free and fast recovery.


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## jmcbrid2

Just so everyone knows. Donors have to take shots of neupogen which causes their bodies to produce extra bone marrow. It causes bone pain and can get pretty painful. Then they hook them up to a machine which draws blood from a catheter in their neck and separates the stem cells and puts te blood back in. They pump them with calcium, etc during this. Doing so can cause then to experience pain and a tingly feeling. Thought everyone would like to know a little about the donor experience. I'm gonna have my sister write on here and post about her experience.


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## SherryLynn

I am really glad your sharing this, thanks


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## jmcbrid2

*Day -8*

Just started chemo today. The picc line had problems going in right so that took 3 hrs yesterday. Then I was admitted yesterday evening. Dr Burt came in and gave the ok to start chemo. Today I'm getting a 30min dose of fludarabine. Almost done for the day!


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## Lawyerboy

Hope everything goes well for you


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## jmcbrid2

Started a 4 hour course of magnesium today and now I'm on another 30min dose of fludarabine. I'm a little nauseous today. But I feel like its more my normal Crohns nausea. Will keep you all updated!!


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## Sue-2009

Well, I applaud you and am thankful.  It is just an ugly dibilitating condition.  I am a frequent flier here. Keep strong and know we are all here for you. You are a pioneer!  God bless!  Sue


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## KWalker

Just wanted to wish you the best of luck and send positive vibes your way.  Unfortunately I haven't had first hand experience with stem cell transplants but from what I've read you will be so much better when this is all said and done. 

Your friends at the crohnsforum are here for you with all of our support and I personally would like to stick by while you go on this journey.


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## jmcbrid2

Started cytoxan with the fludarabine, strong steroids, some anti viral meds, and mesna. And they have me something to make me per a lot so the cytoxan doesn't give me bladder issues. I've had to take a lot of Benadryl because my nose was burning and my head was killing me. They also gave me merinol. Which is medicinal marijuana and that helped a lot but made me sleep a lot.


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## jmcbrid2

Day -4

Taking fludarabine, cytoxan, and campath today. Was having a little reaction so they loaded me down with tons of Benadryl and now I feel much better. I can't really eat but my Crohns symptoms seem to be better if not almost gone. They said I'll lose my hair in a couple weeks. And they said my worst days will be these last few days of chemo and the day of transplantation.


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## ElleMac

I'm so excited to read about someone receiving this treatment. I want to get it, the cost is high but the benefits far outweigh the negative impact. Good luck <3

 2


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## jmcbrid2

Day -3

Last day of chemo is tomorrow!! Yay!! I've tolerated it fairly well. They have me on cytoxan and campath today and tomorrow. They kept the cytoxan on a slow trip and loaded me down with Benadryl and I've been doing well. Getting weak but went 2 days with no diarrhea! And minimal pain now! I'm feeling more myself again. Just as soon as I finish this


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## Lawyerboy

Hi jmcbrid2, I was wondering what are your chances of getting graft vs host disease following the transplant? What did the doc tell you?


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## raechel

One more day of chemo?!? Woooo WHOOOOO!!!  You got this girl! So excited that you already feel some crohn's relief even if the chemo is tough... Thanks for posting!:dance:


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## jmcbrid2

Day -2

Counts are dropping like they're supposed to. But I'm starting to get really sick now. I'm also having a blood transfusion today. But today is my last day of chemo


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## jmcbrid2

I don't know much about the grafting process yet but it seems very safe and less risky with the right medications. That's about all I have to offer today. Maybe once I regain some strength I can post some additional info about that process!! Thanks for asking!!


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## KWalker

Hang in there! You're a strong girl


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## NotYetFitEnuf

Good luck. Can't believe what some people have to go through with this disease


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## chrisnsteph1022

Any updates?? I hope you're doing well.


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## jmcbrid2

I am so sorry I haven't updated recently. Ever since the day before my transplant day, I was feeling so weak and nauseas and in a good bit of abdominal pain. The pain meds I had been getting were making me worse. So when I realized that, I had them take me off everything but Norco which helps a lot more. 

The day before my transfusion, I started getting these bad abdominal cramps and I'd sit on the toilet for forever in writhing pain and nothing would come out. This has continued. They gave me a laxative for the first time the other day. And now, while its still sooo very painful, it's regulating to once or twice a day. The nausea is getting much better and I'm able to sleep again. 

Day 0: September 13, 2012 10:18am I had my 2nd birthday. They brought the cells in Luke something from a movie, steam and all lol they blessed the cells (my choice) and started the infusion. They came in a small bag that looked like blood. The second they went in I tasted creamed corn, started breathing heavy and started vomiting through the entire thing. But Dr Burt was in the room with me and in 30min it was all done. I was pretty suck for the next two days but I'm gradually getting better. 

It's now Day 5 and I'm full of energy with the occasional pain and nausea and a few other issues...needed 2 blood transfusions, one platelet transfusion, a couple bad fevers, and I have a lot of blood in my urine. So they're monitoring me and as soon as my counts go up, I go home!! Yay!!  Just be praying this really works and I'm gonna be better than I can remember being!


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## raechel

Wow, Jenn, sounds brutal :-( You are one tough cookie! Emma and I are keeping you in our prayers!


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## AuntieEm

Intensely following your progress.


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## Moe.

Good luck. Hope all goes well.


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## Clash

Good luck!!! I hope you are home real soon!!!


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## jmcbrid2

My memory loss is getting a little better. But I was getting to the point I couldn't remember my own name or where I was or what we were talking about. Very scary. And now my hairs starting to come out


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## jmcbrid2

Please ready blog for info I just couldn't get in both places. Sooo tired! Let me known if it doesn't work!! Thanks for understanding!

www.lifeofacrohnie.blogspot.com


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## Lawyerboy

From what I understand after reading a lot of medical research on stem cell transplants I understand that it is supposed to be really tough; so hang in there and you will be alright. Best of luck!


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## AuntieEm

We are pullin right along with you!!


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## Gwen pippy

Keep strong honey. xxx


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## jmcbrid2

I shaved my hair off today. It wasn't as emotional as I anticipated. I'm coping well. The pain has been better today. Lots of diarrhea last night with soooo much pain but today has been much more manageable. They switched my picc line because they suspected an infection in it. They're doing stool tests now for more research as to where this infection is coming from. I'm on tons of antibiotics still that will cover all areas of my body. I'm taking two neupogen shots a day to increase my white blood cells. 

The doctor says I'm doing really well an they expect discharge this week. My appetite is still crummy but I get like that in hospitals. I eat better at home. But my Crohns symptoms seem better. I feel like I'm feeling more of the transplant side effects right now. But time will tell !


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## jmcbrid2

See my blog for pictures!! Lifeofacrohnie.blogspot.com


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## jmcbrid2

My counts are finally going up and I should be going home soon! I feel better and I've already eaten twice today!!! Yay!!! Dr Burt said everything looks good and when he pressed on my belly...no pain!!! I'm still weak as can be expected but I do see a difference already. Praying this continues to get better!

Also I haven't used the bathroom in the last day but when I try only blood comes out, Dr Burt says its common in Crohns patients of his. It's almost like the body is expulsing the disease from my body! Praying thats true!


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## KWalker

The pictures don't seem to be showing up for me. I'm so glad you seem to be on the road to recovery and continue to progress.


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## jmcbrid2

Well I was hoping to go home today but I'm not quite there yet. We will see about tomorrow. My platelets are right where they need to be to go home but they want to be sure they're continuing to rise before sending me home. Plus my white cell counts are at 0.8 and they need to be at 1.0. I'm taking neupogen shots still so they should be up in the next couple of days.

I've barely had any nausea or pain. I'm only using the bathroom a couple times a day. It's loose but they said its most likely because of all the anti rejection and anti viral meds. I feel good. I'm just exhausted. My body has been put through the ringer and I'm feeling it. I think once I'm home with my family in my own house and in my own bed, I'm going to feel amazing!

Amy, Dr Burt's nurse, just discussed my discharge instructions with me which is exciting because it means I'm almost done and I've made it through!

On a different note, my blog was featured on Healthline.com's Top 11 Crohns Blogs of 2012! How exciting!! They specifically mentioned my positive outlook despite my condition and that seriously brought tears to my eyes. I knew I was going through this for a higher purpose of reaching others and that confirmed it for me! That made all of my struggles worth it because someone is reading and someone is getting something from it. God is so good!


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## AuntieEm

Thinking about you today.  Hoping your counts are still climbing!


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## jmcbrid2

Unfortunately my counts dropped slightly so I'm here another day but dr burt is allowing me to go to the cafeteria in the hospital to help with my cabin fever. That's nice


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## AuntieEm

Hurahhh! out of the four walls!  I know you'll be ready for real fresh air when you do finally get to leave.  *lifting a protien drink to toast higher counts tomorrow*

Auntie em


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## AuntieEm

Hopefully you've gotten to go home. 
Prayers are with you on your continued journey.

Auntie Em


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## jmcbrid2

Thank you! I will be posting an update tonight!


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## jmcbrid2

Ok everyone! Sorry for the delay!! I got home around midnight Friday and I've been battling bad insomnia, ton of pain, and really high blood pressure with blurry vision and dizziness. Not a good weekend. I talked to Dr Burt today and he said the pain should gradually fade with time and to get my weekly bloodwork as normal starting tomorrow morning and we will go from there. I'm pretty sure I'm going to need blood pressure meds since the cyclosporine (anti rejection meds) causes high blood pressure and I can't keep living like this everyday. 

Other than that I'm now only using the bathroom a few times a day, which should lessen with time as well. No nausea. No vomiting after every meal. I have a good appetite. No fevers. No bleeding.


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## AuntieEm

Welcome Home!!


*happy dance*


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## jmcbrid2

My blood pressure is staying high. It's made me so dizzy and my visions so blurry that I've been throwing up. Dr Burt prescribed me something for my blood pressure. It hasn't kicked in yet or I threw up too close to taking it but really hoping to feel better soon.


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## AuntieEm

Sometimes it takes a few tries to get BP meds just right.  Hang tight.

Auntie Em


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## jmcbrid2

My heart rate has been high all day and I'm shaky, like jittery. So I called Dr Burt. He's changed my dose of cyclosporine, asked me to cut down on phenergan, and made my blood pressure meds to as needed if my blood pressure is high. Also my magnesium is low so my dose of magnesium oxide has increased. Pain is still bad. It's like a constant sharp pain. The Percocet reduces it but doesn't eliminate it. But atleast my other Crohn's symptoms are better!


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## AuntieEm

Do you think any of the heart rate/shaky/jiggery is anxiety?  You have been through so much.  I take it the sharp pain is abdominal.  I guess until the areas heal over they will have pain.(?)  Have they given you any indication on how that may go?  I'm glad the other symptoms are subsiding.  It will make daily functioning so much easier once you are stronger.


Prayers continue,
Auntie Em


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## jmcbrid2

I don't think it's anxiety especially since I'm on meds for that too lol. As for the pain, it is abdominal pain and they're hoping it'll fade in the next week but I honestly don't see that happening


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## Guest9283

Sometimes you can have continious pain after the transplant for a couple reasons. The chemo does strip the lining of your insides. It takes approx 6 week to grow a new mucosal lining. It is at that point that you should start to feel like things might be improving slowly. You must remember - the transplant has now killed your crohns (theoretically), but your inflamation still needs to come down and heal. Week 5 for me I started turning around. However i also opted to do TPN for a continued 6 weeks post transplant to let my tummy rest while it recovered. So week 6 - 8 typically while eating solids.

Good luck!


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## jmcbrid2

Thank u for that!!


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## AuntieEm

I see, makes lots of sense ziggy.  thanks


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## jmcbrid2

Well the last couple days I've had bad diarrhea, vomiting, and then a fever. I went to the ER last night. I have a UTI and c diff again. I'm starting antibiotics so hopefully ill feel better soon. My ct scan showed alot of inflammation in my sigmoid colon still so I'm going to talk to Dr Burt tomorrow to see if that's normal or if it means the transplant is unsuccessful. I honestly don't know. I will keep you updated!


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## KWalker

Oh no   I'm praying for you. You're such an inspiration to all of us at the crohnsforum. 
Hang in there!


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## AuntieEm

Praying it's only a small glitch in the road to full recovery.
Keep rested and hydrated.

Auntie Em


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## Guest9283

Effdee also had a c-diff infection during his sct and he is doing just fine(among 3 others that I know of). You have to give your body time to heal(from prior crohns ). No one has ever had a turn around as quick as you're expecting. It's impossible. Hope this puts your mind at rest.


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## jmcbrid2

It does thank u. I think it just gets me worked up because my family keeps saying well I guess it didn't work. When I feel that it did and I'm still healing. Thanks ziggy!


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## AuntieEm

I really think it's great you have others that can share who have been through it.  It really has to put your mind and body at ease.

Hugs,
Auntie Em


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## effdee

Hang in there, Jenn! I had a couple colds, sinus infections, C. diff, and another GI virus within the first few months of recovering. Between the transplant doing its thing and the slew of meds you're still on, your body is going through a ton. If it's feasible for you, I'd recommend taking a probiotic (I took Culturelle) while you're on the antibiotics. Your gut flora is isn't able to do much to prevent gut viruses, so you're quite susceptible. A probiotic should help out.

Don't get worked up about the CT scan. Stem cells are awesome, but they take time to heal the amount of inflammation you had. It won't be overnight, and it won't be in just a few weeks. It'll be a couple months. You'll gradually notice improvement, but don't dwell on it much until at least your 6 month follow up with Dr. Burt. 99% of my inflammation was gone at 6 months, but I was in a bit better shape. Ask your family to relax, too! There's no instant gratification, but I can say that the wait and other illnesses are well worth it. You _will_ be better, but it's going to take time!


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## jmcbrid2

effdee said:


> Hang in there, Jenn! I had a couple colds, sinus infections, C. diff, and another GI virus within the first few months of recovering. Between the transplant doing its thing and the slew of meds you're still on, your body is going through a ton. If it's feasible for you, I'd recommend taking a probiotic (I took Culturelle) while you're on the antibiotics. Your gut flora is isn't able to do much to prevent gut viruses, so you're quite susceptible. A probiotic should help out.
> 
> Don't get worked up about the CT scan. Stem cells are awesome, but they take time to heal the amount of inflammation you had. It won't be overnight, and it won't be in just a few weeks. It'll be a couple months. You'll gradually notice improvement, but don't dwell on it much until at least your 6 month follow up with Dr. Burt. 99% of my inflammation was gone at 6 months, but I was in a bit better shape. Ask your family to relax, too! There's no instant gratification, but I can say that the wait and other illnesses are well worth it. You _will_ be better, but it's going to take time!


Thank u!! I keep telling my family this, that its a process and that it takes time to heal but they keep telling me it didn't work bc I'm still having problems and the inflammation is still there. I'm going to show them your post. This will help them understand I'm not just making it up as I go along lol. My mom was always wary of the transplant to begin with so she has the hardest time seeing things like this! And aside from the c diff, I CAN tell a difference so now I feel like my feeling that is real and not just optimism  thank u!!!


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## effdee

From what I understood, the stem cells can be at work healing inflammation for at least a year post-transplant. Tell your family to save your worrying until then! 

Sometimes it was hard to tell which symptoms to attribute to what. The general trend should be any Crohn's symptoms should get better, and then you just have to factor in whatever else may be going on. There was a silver lining that I could tell C. diff symptoms definitely weren't the same as my usual Crohn's symptoms. Keep thinking long term for now! You've made it through the worst by far.


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## jmcbrid2

I've been on antibiotics for the c diff for several days now. I'm feeling better but am still experiencing some bloody diarrhea and nausea and vomiting. I have NO appetite still at all. Even though I'm still experiencing the symptoms, they aren't has severe as they were last week. So I guess we will just wait and see how I'm feeling in the next few days!


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## Gwen pippy

Thinking of you honey, prayers being sent from Ireland xxxx


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## raechel

I hope you are doing well, Jenn!


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## jmcbrid2

Well I'm getting over the c diff. My stomach pain is completely gone!!! I'm still experiencing some mild diarrhea but its most likely a side effect from my meds. My PCP has increased the meds for my heart palpitations and prescribed me something to increase my appetite since my appetite is nonexistent at this point. I have only eaten a small order of curly fries in the last 3 days. I've lost 20lbs, which I'm not totally mad about lol but this isn't the right way to lose weight. I only take half a pain killer a day now and thts for my back! Not my Crohn's!! Yay!! Other than that the only thing I have to worry about is my hemoglobin. It's dropping and if it doesn't start increasing I will need a blood transfusion. So lets pray about that!!


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## Tenacity

Glad to hear you are feeling better and thanks for the update.  Would you mind sharing what meds they put you on to stimulate your appetite?

Also, make sure your pain pills don't mess with your stomach as some of them can be really bad for the gut.


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## jmcbrid2

For my appetite, I'm on mirtazapine.


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## AuntieEm

Good news Jenn!
Prayers continue for you.


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## jmcbrid2

I'm in a lot of pain and even though I was able to eat some spaghettios today, I'm still nauseous. They're putting me back on flagyll in case it's the c diff but a virus has been going around so idk. I haven't been around any sick people but who knows. I'm also super super super dizzy. I'm getting a blood transfusion tomorrow so hopefully ill feel better after that.


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## AuntieEm

There have been a lot of stomach and intestinal bugs going around town here too.  I've been hold up trying to stay well.  I hope you get to feeling better soon and that it's only short lived.


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## jmcbrid2

Ok so I went to the ER last Thursday morning. Turns out I needed emergency gallbladder surgery. Soooo wasn't expecting that! It was very enlarged and inflamed with adema and scarring from previous infections and issues. My fevers didn't go away after surgery so they put me on vancomycin and flagyll and kept me until Tuesday to make sure my fevers were going away. So far so good. Just gotta keep being safe and taking these antibiotics!!


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## AuntieEm

I hope that was the root cause and you'll be able to mend now.

((HUGS))


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## jmcbrid2

Well I'm still being treated for c diff since my Crohn's symptoms have been suddenly and significantly worse this past week but I'm feeling better. It could very well be because of something I've eaten since I'm now eating anything I want now.. I'm thinking I should slow down a bit and allow myself to heal more. I also had a sinus infection and eye infection but its gone now after some antibiotics. I'm having issues sleeping again so it's back to the doctor for something to help me sleep and help with my anxiety since I'm having coping issues as well. We are also changing around my birth control and hormone meds because I was bleeding for 2 months straight and right after my blood transfusion, my hemoglobin dropped suddenly once again. But one positive thing is I'm never in pain from my Crohn's. I experience some burning in my stomach but I think it's from my acid reflux. Well! That's all dr now!


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## jmcbrid2

And the frequency and urgency is better and no intestinal bleeding at all ever! Yay! So other than the occasional diarrhea and basically daily migraines and nausea, I'm doing great!


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## Moe.

That's great to hear. Hopethar c diff goes away soon. It's a stubborn one.


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## rollinstone

Your journey is inspiring, God bless and I hope it all works 100% 
And that soon you feel better than ever


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## AuntieEm

c--diff is a booger.  Migranes are absolutely no fun though.  I am having terrible bouts with them and the humira.  Thought once I tapered the steroids they would improve but they've gotten worse.  I had to use ambian (Sp) while on the steroids to shut down at night and try and sleep.  But bad thing was I could take a phone call and not remember.   Hope you find some relief! and SOON!

Hugs,
Auntie Em


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## jmcbrid2

AuntieEm said:


> c--diff is a booger.  Migranes are absolutely no fun though.  I am having terrible bouts with them and the humira.  Thought once I tapered the steroids they would improve but they've gotten worse.  I had to use ambian (Sp) while on the steroids to shut down at night and try and sleep.  But bad thing was I could take a phone call and not remember.   Hope you find some relief! and SOON!
> 
> Hugs,
> Auntie Em



I know how you feel. Ambien makes me feel terrible! I'm praying for you! I hope you get some relief soon!!


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## effdee

Glad to hear your general trend is going well! I hope you're able to get better sleep soon. With so much going on with your body I'm sure good, consistent sleep would definitely be greatly beneficial physically, mentally, and emotionally. Hang in there!


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## AuntieEm

Della said:


> waiting for a stem cell transplant.


I hope your wait isn't too long!


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## jmcbrid2

AuntieEm said:


> I hope your wait isn't too long!


Same here!!


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## jmcbrid2

Ok so I saw my GI dr. I'm going back on vancomycin for c diff even though my test came back negative, it could still be living in my body. I'm on Ativan plus pexeva to help with anxiety and sleep. I went to sleep before midnight lastnight and slept until 2pm and feel amazing today! I don't know if its because I was exhausted or because of the Ativan. We will see!  I'm also now on something for my migraines which is helping too. And I'm taking carafate to help coat my stomach and reduce the burning I'm having. So far so good!!

Note: I was also told to stop taking the phenergan for nausea because it is linked to causing me to have restless legs at night!! Thought this info might help some of you!


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## jmcbrid2

I was rushed to the ER Tuesday because I felt perfectly fine and then it suddenly felt like something exploded inside of me. They admitted me and I was put on vancomycin even though my labs came back negative for any infections. I started feeling better by Friday but Dr Burt told the doctors to go ahead with a colonoscopy and with an ultrasound on my liver and pancreas because my liver enzymes were high. 

Ok here's the results: I got magnesium, my hemoglobin dropped to 8 but I didn't get a blood transfusion. They stopped my voriconizole and cell cept. Liver and pancreas are fine! My liver enzymes will be monitored! 

My colonoscopy showed only 3 ulcers, a few polyps, significantly reduced inflammation, and the part of my colon which was once full of inflammation and ulcers nearest my small bowel is now completely clear. 

In other words... The stem cell transplant in only 4 months has almost completely put me in remission!! God is so good and I can't help but cry at how blessed I feel right now!!


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## rollinstone

Glad to hear! Hope the other ulcers heal up soon! And you are on your way to smooth sailing


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## jmcbrid2

Today it had been 5 months since my transplant! I'm feeling great in general. I have my moments but all in all I'm feeling good!


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## jmcbrid2

Also if anyone wants to private message me any questions or ask on here, please feel free! I want to help in any way I can! I've tried a lot of treatments and can offer advice there as well!


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## jmcbrid2

And if anyone has any insomnia tips, post them here! I'm sure many of us have experienced problems like mine!


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## jmcbrid2

Still feeling well! I just scheduled my 6 month follow up for the end of march but I think all will go well because my only current issues are stomach burning, nausea and insomnia.


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## rollinstone

I'm glad youre doing well, I hope the other issues go away soon so you can feel 100%


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## AuntieEm

Jenn, glad things are going better!  I'm still attempting the humira.  Just stepped up the intervals to every week.  They wanted me to try one more biologic before looking more into the stem cell transplant.  I've been watching your updates closely and appreciate your story as well as the others.  Thank you so much!

Auntie Em


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## jmcbrid2

AuntieEm said:


> Jenn, glad things are going better!  I'm still attempting the humira.  Just stepped up the intervals to every week.  They wanted me to try one more biologic before looking more into the stem cell transplant.  I've been watching your updates closely and appreciate your story as well as the others.  Thank you so much!
> 
> Auntie Em


I am praying these drugs work for you and you don't need the transplant yet! You're in my thoughts and prayers!!! Thank you for your support!


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## jmcbrid2

I have cmv still. I also have an upper respiratory infection. Also thrush in my throat. Im coughing, sneezing, stopped up, congested and Im just now able to eat for the first time in days.


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## jmcbrid2

Oh and my crohns is still improving!


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## rollinstone

Hope you start feeling better soon love!


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## jmcbrid2

Does anyone have info on cmv?

From what i know it is only dangerous to immunocompromised patients and babies and it causes mono like symptoms. Its basically a bad virus but healthy people shouldnt worry about it!


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## raechel

Hey girl! I hope your body is starting to fight the CMV. It sounds like it can get pretty nasty from what I've read. Hugs!


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## jmcbrid2

My cmv has caused pneumonia so now Im battling both. Just one of the luxurious side effects of the transplant.

On a lighter note, Im being taken off some of my transplant meds so thats good news! And Im off to Chicago in just a few days for a followup! I have scheduled a fertility and hormone consult here in April since Dr Burt's nurse told me that checking my fertility is not part of their study even though i heard they did it with one of their previous male patients so i don't know!but my body hair has once again stopped growing and my menstrual period has all but disappeared. So we will see!

Thanks to everyones thoughts and prayers! They mean more to me than you know! Remember to click the "thank" you under my posts so i can keep my forum monitor status and keep you and people on other threads well informed on all the nitty gritty details on this new world of treatment for all of us crohnies!


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## jmcbrid2

Ok so Im in Chicago for my 6 month followup. So far Ive had labwork and saw Dr Barrett in GI. He said my pneumonia is worse than they thought and my lungs sound really bad. Also he said my hemoglobin is really low and my arthritis is bad and needs the attention of a top rheumotolgist.

I did the Movi prep for my colonoscopy in a few hours. I handled it better than usual and didnt even throw up! Of course i didnt drink it all. The point where i knew even one more sip would make all of it come up was when i stopped to be safe. 

I will let you all know the outcome of tomorrows testing!


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## jmcbrid2

Ok Im so sorry for my delay in updating. My life has been insane. My personal life that is...which i have to watch because as we all know stress is the biggest trigger!!

My colonoscopy showed several pseudo polyps. This is because i was so severely ill and this is my bodys reaction to healing itself. They shouldn't be cancerous however they do show signs that it is very likely i will develop colon cancer at some point in the next 15 years or so. Dr Barrett (GI) in Chicago is moving to work at the university of Kentucky. He is adamant about taking care of me and doing cutting edge blue dye cancer screenings every year or more. So i will be going to see him in Kentucky from now on. I don't mind. He's an incredible doctor.

Dr Burt however infuriated me. I haven't spoken to him in 6 months and he literally spent my entire visit with his hand on the doorknob trying to rush me out because i was his last patient of the day...after i already came in an hour early!  and he told me not tp worry about my arthritis, it'll go away! Wow. So Im supposed to suffer in the mean time?? And he told Mr not to worry about my ulcers in my colon...they'll go away on their own!...what?!? Needless to say he called me back the next day and decided to take the advice of Dr Barrett and put me on a short course of Uceris, a mild asteroid with few side effects.


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## jmcbrid2

Oh and as of now, my pneumonia is gone but Im still getting over a cough. Ive been a little sick this week..throwing up and migraines. My white cell counts are low so Im staying in this weekend and away from germs lol

Also i switched my birth control. I found out the pills may not be being absorbed because of my crohns so i went to the patch but am switching to the depo shot next week. Im saying this because i want everyone to consider the absorption of their birth control and also because Im terrified a pregnancy will make my disease flare up again so Im not taking chances!


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## jmcbrid2

Everyone let me know if you're still getting useful information about the whole stem cell process by thanking my posts and if you need more info please just ask! Either here or in a private message. It's very important to me that Im going through all of this so i can help others and share as much information as i can! Thank you all for your love, prayers, and support!


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## raechel

I am so thankful that you keep everybody updated. It is great to hear that your Crohn's is still improving, but the colon cancer part is scary. Awesome that Dr.Barrett is going to continue to see his new location. Bonus is its closer to home! Bummer is, do you have to see 3 GI's now? Local, Barrett, and a new one at Northwestern?
Good info about the birth control too. I never thought about that before.


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## jmcbrid2

Im going to just have to tell Dr Burt Im not going to see a GI there..that seems excessive. But we will see i guess lol


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## jmcbrid2

Been feeling sick the last few days. Nausea.  can barely hold food down. But i think there's just aminor bug going around so... Plus my white count is only 2.1 right now  and my hemoglobin has dropped to 9.9 again. Which isn't too bad for me but still low. 

Also my hair has stopped growing. I only shave like once every couple of weeks and its still just stubble. Plus my eyelashes are breaking again too. Just like after chemotherapy. Does anyone know what could be happening?? I told my GI, my PCP, Dr Burt and my ob gyn but none of them have checked any of my hormone levels or anything. I mean i don't mind it but it not normal so of course it concerns me. I asked my gyno to check my hormones so see if Im experiencing early menopause from the chemo but he said We could check now but lets wait a year or two! Im like what!? Im 26! Its time for me to know if Im able to have kids!! So needless to say Im seeing a new dr. Plus come to find out, my mom saw him too and he's known for not taking patient concerns seriously and missing things. Wish i knew this prior to my visit! Like i need extra bills! Lol


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## jmcbrid2

Ive had an upset stomach the last few days and have been in pain but Im off pain killers so i can't take anything. However i did take some meds for my stomach and they actually worked!

Im getting an infrared body wrap today to help me lose some of the weight i gained from the percocet so i will let you all know how that goes!


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## AuntieEm

Trying to do a little catch up.  We've been in the middle of a move and that's about all I've had time to do for some time now.  So glad I got a chance to see how you were doing Jenn.  

Glad you are still hurdling the roadblocks as they come up with a few breaks along the way.  They upped my topiramate (doubled it) and it has really helped in preventing the daily migranes I was getting.  I think I had mentioned it to you at one point and you were having issues with them as well.

I don't know what to tell you about the hair and hormones.  Finding another ob/gyn that listens sounds like a good first step.  I have terrible hair, skin and nails but that's due to absorption but has also worsened on the humira.  Luckily my GP is very good about checking my nutrition levels when I ask and even hormone levels.  My GI only wants to treat the disease and not the effects of it.   Luckily I've found a combination that works.

Keep updating.  I still have a lot of unpacking and "nesting" to do... don't know how I'll ever have the energy to ever finish.  But I guess it will always be here tomorrow to work on.... *sigh*

We are all in your corner! Hang in there!


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## jmcbrid2

Im still having bad daily migraines. Im taking a headache prevention med daily but still getting them at least once a day   Im calling my PCP tomorrow about it. 

My cmv lab came back negative finally! So yay for that! I will go off the valcyte now and back on acyclovir. Hemoglobin is still low and Im seeing it..aka bruises galore!

My body wrap helped me instantly lose an inch and a half in my waist alone and 2% of my body fat! How cool?! Plus it helped tremendously with my arthritis pains!! Now i just need a solution for my abdomenal cramping..which isn't constant or completely unbearable but it does hurt really bad. Except Im not entirely sure if it's crohns related or female related..very frustrating. I have 5 more body wrap treatments with my next one on Thursday. So maybe those will help with my pain too. They also detox you so that'll be a nice benefit as well. If any of you want more info about them, let me know and ill tell you all i know. I definitely recommend them even if you're not in it to lose fat cells. They work wonders for joint pains and back pains too. They're hot as everything and you sweat alot but its worth it to feel that good after it. I actually felt better than after a full body massage haha

My diarrhea is getting better but you know how it is...good days, bad days, worse days. At least now Im having only good and bad days instead of bad and worse days! God is good!


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## AuntieEm

I still battle dehydration so not sure about doing the body wraps right now.  I don't know if anything can beat a massage!!!!  I could use one of those several times a day plus a reflexologist!  I live in a very small town (less than a thousand) but luckily there is someone locally that does massage and reflexology which does help during hard times... who am I kidding... it's good ANY time.  LOL!  I'm not sure where I could get the wraps done.  Maybe in the town I have to go to, to shop.

I hope they can give you something that helps better with the migrane prevention.  The chronic migranes can really make things unproductive even though your other symptoms have improved so much since the transplant.


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## AuntieEm

PS:  Congrats on your CMV Results!!!  Woot Woot!!


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## jmcbrid2

Praying for you Em!

Im at my PCP now for my migraines and arthritis which are keeping me from sleeping they are so bad. And the migraine problem is making it hard for me to hold down food and it's keeping me extremely lightheaded.

I will update you when I leave!!


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## AuntieEm

Our weather has been so unpredictable!!! ughhhhh!  My joints are in total revolt!
Any luck with the migraine control Jenn?


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## jmcbrid2

On new migraine and non narcotic pain meds but nothing is helping. My memory is slipping. Im up all night in pain. Im in agony. Im cramping bad too. Im getting frustrated. I started volunteering with the women's shelter and here i am again having to cancel my obligations with them because of my pains. Ugh


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## jmcbrid2

Ive been to 3 doctors this week. My family dr, my psychiatrist and my therapist. Fun. Im going to have to scale back any volunteering. It's been too much on my body and all the pain had caused me so much anxiety i can hardly control it. My migraine are getting better even though Im on about 5 meds for them including a 12 day dose of prednisone Im not happy about.


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## jmcbrid2

I know my crohns is getting better. It's just that now all these other underlying issues i had all these years are surfacing and i have to deal with them and still cope with recovering from the transplant. Gets frustrating.


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## jmcbrid2

As for an update specifically related to the transplant, my counts have dropped again because i got CMV again, which i found out my dad has been giving me because he is unhealthy and despite my requests to not have face to face contact, he came by my house anyway and now Im back at square one. Hoping this time though that i caught it soon enough to not get pneumonia!  Im pretty sure i did! Other than that the crohns is still improving. Still have yet to regret this process.


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## jmcbrid2

And one more thing...just so you know. Even though the hospital went into an agreement to pay for all transplant related costs, Im now under review and being billed $22,000 for my sister donating her cells. I called them and they said they wanted to file it under her insurance and Im like OMG i already told them a million time are doesn't have insurance! Like Im not paying $22,000 for a bill that should be covered! Im honestly terrified because of course i have no documentation of this agreement, only Dr Burts research team does. Ugh. Soooooo frustrated! I can't afford that... Who can!?!


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## Mpatton81

I go in on the first week of July for my stem cell transplant. I'm from Scotland tho, and we have a national health service. Our government picks up the tab for all our medical costs. We are pretty lucky. 

Out of interest, do u know how much the procedure cost in total?


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## jmcbrid2

Mpatton81 said:


> I go in on the first week of July for my stem cell transplant. I'm from Scotland tho, and we have a national health service. Our government picks up the tab for all our medical costs. We are pretty lucky.
> 
> Out of interest, do u know how much the procedure cost in total?


It.cost about $300,000 all together. Not a cheap procedure but well worth it! Good luck and please keep us all updated on your progress!!


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## Mpatton81

Thanks. I've started a blog as there are only a handful of people had one in the UK. It's to give a British perspective as I couldn't find anyone online from here who has had one. 

The blog is: http://mystemcelljourney.wordpress.com

I hope you start to feel better soon. It's just typical tho. Your Crohn's disease has finally settled, but everything else makes you feel crap now. I hope you feel better soon.


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## jmcbrid2

Thank you! I will definitely be following your progress and praying!


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## jmcbrid2

My migraines are getting better and Im seeing a therapist for my anxiety issues. The last the g i need is another flare. Don't get me wrong, Im not feeling awesome lately...pain, upset stomach and even accidents as embarrassing as that is. But the crohns is still improving and my cell counts are up. No more cmv again! And my white cells are finally at 6.1! Im ready to be better!

I see a rheumotologist June 3 so i will let you know how that goes!


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