Stem cell transplant journey beginning

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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! :p

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. :)
 
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!
 
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!!
 
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.
 
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.
 
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.
 
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!!
 
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!
 
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!
 
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
 
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
Click to expand...


I know how you feel. Ambien makes me feel terrible! I'm praying for you! I hope you get some relief soon!!
 
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!
 
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!
 
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!!
 
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!
 
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!
 
And if anyone has any insomnia tips, post them here! I'm sure many of us have experienced problems like mine!
 
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.
 
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
 
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
Click to expand...

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!
 
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.
 
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!
 
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!
 
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! :)
 
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!
 
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.
 
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!
 
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!
 
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.
 
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
 
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
 
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!
 
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!
 
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!
 
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.
 
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!!
 
Our weather has been so unpredictable!!! ughhhhh! My joints are in total revolt!
Any luck with the migraine control Jenn?
 
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
 
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.
 
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.
 
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.
 
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!?!
 
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?
 
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?
Click to expand...

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!!
 
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.
 
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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