Share Facebook
Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Started TPN - update on successful treatment


06-12-2012, 11:45 AM   #1
ravensfan88
Member
 
Join Date: May 2012
Location: Abingdon, Maryland
Started TPN - update on successful treatment

I was admitted to the hospital on Wednesday, June 6th to start the TPN infusions. My first infusion was on Thursday, June 7th and this is how the cycle went:

6/7/12 - 24 hour TPN cycle
6/8/12 - 24 hour TPN cycle
6/9/12 - 12 hour TPN cycle (runs while I sleep)


At this point, they said all of my levels were looking good and I was to be released from the hospital and would have nurses come to my house to help me continue my TPN at home. After a while, I will have to set everything up by myself with only weekly visits from a nurse to draw blood, etc. So far, my home cycle has been:

6/10/12 - 12 hour TPN cycle
6/11/12 - 12 hour TPN cycle


I will be on a 12 hour cycle every night. I was told eventually (to be tapered off) I may go down to an 8 hour cycle, or a cycle of 3 days per week instead of every night.

As far as results go, I already feel increased energy. My skin is looking healthier, my hair looks healthier, I am able to move about more easily, my body has even started to fill out just a bit (I weighed 140lbs originally and was down to 100 so I was skin and bones) to the point where my muscle tone is returning. I have also noticed improvement in my bowels. I have less activity throughout the day and night, so I am able to sleep and relax more easily. I have noticed a reduction in my BM's and though I still have D, the texture is improving and not completely watery. I also had issues passing the coating of my Mesalamine medication, which could lead to some pain and discomfort. Since starting the TPN, I have not noticed the passing of any medication which leads me to believe the malnutrition I suffered from did not allow my body to break down the pills as easily.

The major downside to having this treatment (apart from risk of infection) is the frequency that you will have to urinate. During my 12 hour cycle, I probably wake up during the night 4-6 times to empty my bladder. This is because of all of the fluids and they need to be passed otherwise you'd have a much larger issue.

All in all, the TPN has been VERY successful in balancing my body and helping me to heal. I am able to absorb food a lot better, as before I was not absorbing anything (and it showed during BM's). I am also due for my 4th Remicade infusion in mid July and hope to see great results as I would be on a full month of TPN treatment by that point.



My GI told me the goal is to be on this treatment for 6-8 weeks until I can reach close to the weight I was prior to becoming severely ill (135-145 lbs).


If anyone has any questions, concerns, comments or anything at all they'd like to say - please feel free. I'd love to spread any information or hear what any of you guys have to say.

Thanks for reading and I hope you all feel better and get healthy!
__________________
Nick D.

Current Medication
Remicade - 10mg/kg (5th infusion 8/21/12)
TPN infusion (12 hour cycle every night)
Escitalopram 10mg - once daily
Lomotil - (2.5mg) up to 3 times daily
Ursodiol 500mg - twice daily
Align Probiotic - once daily
Vitamin D3 1000iu - twice a week (because of elevated liver enzymes)
06-12-2012, 10:00 PM   #2
PsychoJane
Moderator
 
PsychoJane's Avatar
 
Join Date: Mar 2011
Location: Quebec

My Support Groups:
Glad to hear you are getting better!! =]
__________________
Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
06-12-2012, 10:08 PM   #3
Jessie_76
 
Jessie_76's Avatar
 
Join Date: Feb 2012
Location: Bradford Ohio

My Support Groups:
I had the same issues with the Mesalamine...my Dr. thought it was odd.
06-12-2012, 10:19 PM   #4
Keepingfaith
Senior Member
 
Keepingfaith's Avatar
 
Join Date: May 2012
Location: Alabama
How did you come to the conclusion to do TPN rather than EN? I'm just curious becauseiam so tired if being in major doses of Prednisone and I don't want to think about surgery. I'm looking into EN or something like TPN if Cimzia doesn't put me in remission.

It is so nice to hear stories of success with EN & TPN!!
__________________
Current medication:
Entyvio
Imuran
Entyvio
Prilosec
Protonix
Seasonique
Noritriptyline
Steroid suppositories
Canasa suppositories

Diet: Feeding via J-tube

DX: Crohn's Disease, Juvenile Rheumatoid Arthritis, Endometriosis, Gastroparesis

Previous Medications:
Remicade- Drug Induced Lupus, Humira, Prednisone,
Entocort, 6MP, Methorexate, Amitriptyline, Asacol, Flagyl, Apriso, Cimzia, Cipro, Sulfasalazine etc. You name it, I've tried it.
06-13-2012, 06:29 AM   #5
ravensfan88
Member
 
Join Date: May 2012
Location: Abingdon, Maryland
How did you come to the conclusion to do TPN rather than EN? I'm just curious becauseiam so tired if being in major doses of Prednisone and I don't want to think about surgery. I'm looking into EN or something like TPN if Cimzia doesn't put me in remission.

It is so nice to hear stories of success with EN & TPN!!
It was all my GI who suggested and set up the TPN.

They had hoped I would have reacted better to the Remicade treatments and hoped for a faster recovery. Unfortunately, I still only weighed 100lbs despite regaining my appetite and eating pretty well throughout each day.

My body was unable to absorb anything important from the food I was eating. I was just too "sick". So, my GI set up to start TPN in the hospital and then of course continue the treatment at home.

I felt better after the first treatment. More energy, feeling better mentally and physically and an improvement in my diarrhea. I also have a lot less "activity" going on through my intestines and bowels throughout the day and night. I've also already started to "fill out" and gain a few lbs (which the TPN helps me absorb food better as well!).

If you're considering this type of treatment, I suggest you bring it up with your GI. There are risks involved with TPN, but I feel the benefits far outweigh the risks.

TPN will require a stay in the hospital while they set up the PICC line (which for me, enters my left arm in a vein on my bicep and then travels up the vein near my heart, which helps your body get the nutrition into the bloodstream). You will be monitored and have blood drawn daily so that the pharmacists can create a solution specific to your needs. It is possible for you to have a longer stay in the hospital than I did (5 days), just so they can make sure you're not having any adverse reactions. They schedule nurses to come to your home to help you learn how to set up the TPN treatment and there is a 24/7 hotline if you ever have any issues. Once you are released, they will have a company deliver all of the medical supplies to your home and set up times for a nurse to come to your home. They will come as often as needed until you are comfortable hooking up on your own. After that, they will come weekly to draw blood (again, to monitor your levels) and change your dressing. At first, it's a lot to take in but it's really not too difficult to learn. They'll outline steps to take and it helps to take notes.


I hope this information was beneficial to you, and if you have any other questions - feel free to ask me and I will answer to the best of my ability.
06-15-2012, 04:35 PM   #6
Keepingfaith
Senior Member
 
Keepingfaith's Avatar
 
Join Date: May 2012
Location: Alabama
Sounds good! I've lost almost 90 pounds since March 2011 so I understand the frustrartion with weight. It's horriable. I love food but it hates me

Thank you for the information & if I can't manage to keep any weight on in the next two months & the Cimzia hasn't kicked in, I'm going to share this information with my GI.
06-16-2012, 12:33 AM   #7
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
This is great, please keep us updated! Best of luck!
__________________
It's good to be back
06-16-2012, 10:45 AM   #8
ravensfan88
Member
 
Join Date: May 2012
Location: Abingdon, Maryland
This is great, please keep us updated! Best of luck!
I'm still continuing along the 12 hour - 2000 ml treatments and everything has been positive. Every day feels better.

The only issue I really have now (apart from the Crohn's symptoms which are still here, just easier to deal with) is my feet/ankles and calves have swollen a bit from all of the fluids I take in. My doctor doesn't seem concerned because the swelling isn't that bad but it has been suggested to switch to 1500ml over 12 hours or 1500ml over 16 hours to try and get my body used to all the extra fluids. It's good to know that if you have any issues, they can change your treatment to make it perfect just for you.

Here is to getting healthier every day!
06-16-2012, 10:49 AM   #9
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Does your TPN have iodine in any form in it?
06-19-2012, 10:16 AM   #10
ravensfan88
Member
 
Join Date: May 2012
Location: Abingdon, Maryland
Does your TPN have iodine in any form in it?
I'm not sure, but I don't believe so.
06-19-2012, 02:37 PM   #11
Tenacity
Senior Member
 
Join Date: Jun 2012
Location: Houston, Texas

My Support Groups:
How did you come to the conclusion to do TPN rather than EN? I'm just curious becauseiam so tired if being in major doses of Prednisone and I don't want to think about surgery. I'm looking into EN or something like TPN if Cimzia doesn't put me in remission.

It is so nice to hear stories of success with EN & TPN!!
Over the years my thoughts are as follows.

Tpn is more of a last resort treatment, compared to EN. However it is also more likely to have greater bennifit. This being because, although some EN drinks are elemental, they still have to pass through the digestive tract and thus require some effort in absorption. Tpn on the other hand goes straight to the blood stream bypassing any need for your stomach to work. Giving it time off to rest. Now the reasons why it is not the first resort is because it's generally harder on the patient. Also liver enzymes need to be watched as long term use has shown to lead to liver failure. That's why they generally keep it 8-12 weeks max. Also risk of infection is higher, as you open a direct port to your bloodstream a couple times a day. EN does work, but I would think of them as different treatments for different stages of disease activity. Hope that helps clear some questions
06-30-2012, 09:35 AM   #12
ravensfan88
Member
 
Join Date: May 2012
Location: Abingdon, Maryland
Over 20 days of the treatment and going strong. I've gained around 15 lbs and actually LOOK healthy! Still have some D, but it's getting better. Can't wait for my next Remicade treatment on July 16th!
06-30-2012, 12:04 PM   #13
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
That's great!
06-30-2012, 03:33 PM   #14
Keepingfaith
Senior Member
 
Keepingfaith's Avatar
 
Join Date: May 2012
Location: Alabama
So glad it is working for you!

15 pounds?!?! That's amazing! I'm super jealous! May the TPN keep on keeping on! Thanks for the updating! The other day I was just thinking about how the whole TPN was going for you!
07-07-2012, 09:56 AM   #15
JSchneider
 
JSchneider's Avatar
 
Join Date: Jun 2012
Location: Claremore, Oklahoma
I love this thread, a lot of great information and insight. Our 10 yr old just came home from the hospital w/ a TPN and it's nice to hear things from the patient side. She's struggling w/ feeling hungry all the time, we gave her some sugar free gum just so she could chew and feel like she's "eating"
Thanks so much for sharing and I hope you continue to get wonderful results!
07-08-2012, 05:02 PM   #16
ravensfan88
Member
 
Join Date: May 2012
Location: Abingdon, Maryland
I love this thread, a lot of great information and insight. Our 10 yr old just came home from the hospital w/ a TPN and it's nice to hear things from the patient side. She's struggling w/ feeling hungry all the time, we gave her some sugar free gum just so she could chew and feel like she's "eating"
Thanks so much for sharing and I hope you continue to get wonderful results!
I'm sorry to hear about your daughter going through this, but I am glad to hear she is getting a good treatment!

Fortunately, I was able to eat prior to the TPN and am still able to eat. The only problem was food was doing nothing for me but getting rid of the hunger - now, it actually helps me which is why I'm probably able to rapidly gain weight and feel much better (along with my Remicade and TPN of course).

Anyway, I hope your daughter gains back her health and can move on with her life. She deserves to be a kid! Keep us updated!
07-08-2012, 08:52 PM   #17
JSchneider
 
JSchneider's Avatar
 
Join Date: Jun 2012
Location: Claremore, Oklahoma
I'm sorry to hear about your daughter going through this, but I am glad to hear she is getting a good treatment!

Fortunately, I was able to eat prior to the TPN and am still able to eat. The only problem was food was doing nothing for me but getting rid of the hunger - now, it actually helps me which is why I'm probably able to rapidly gain weight and feel much better (along with my Remicade and TPN of course).

Anyway, I hope your daughter gains back her health and can move on with her life. She deserves to be a kid! Keep us updated!
I will keep you updated, I love this forum~ SUCH a blessing! Especially when parents can get an insight from actual patients like you!
07-31-2012, 02:15 PM   #18
ravensfan88
Member
 
Join Date: May 2012
Location: Abingdon, Maryland
Hit a rough patch for a couple of weeks when I cheated on my "diet" for a few days and had some food items that I shouldn't have. Things are recovering now and I only lost a few pounds (due to not eating).

I believe the plan is to increase my Remicade dose from 5mg/kg to 10mg/kg and receive the treatments every 6 weeks instead of every 8. The plan is to also remove me off of TPN sometime in August.

Also I was told I'd be receiving Iron infusions 2-3 times to "fill the tank" and get my energy back, etc. This way I don't have to suffer through side effects with taking Iron orally.


I will keep you updated, I love this forum~ SUCH a blessing! Especially when parents can get an insight from actual patients like you!
JSchneider, how is your daughter doing?
07-31-2012, 03:22 PM   #19
JSchneider
 
JSchneider's Avatar
 
Join Date: Jun 2012
Location: Claremore, Oklahoma
Ravensfan88~ sorry to hear you slipped a bit it's hard NOT to slip tho! Em does Remicade every 6 weeks too We had to take her to the ER after having her picc line in for 2 weeks, she had developed a blood clot. I noticed her arm/chest were swelling ever so slightly so I took her in-glad I did BUT-good news! She's seems to be in headed to remission! That is a Blessing
I hope you get back what you've lost and continue to get better.
09-01-2012, 09:30 PM   #20
ravensfan88
Member
 
Join Date: May 2012
Location: Abingdon, Maryland
Finally had my PICC line removed today!

Man, does this feel great.

I went to the doctor yesterday and I weigh 134lbs! This is amazing.

My arm is very irritated and itchy, but I have no more 40cm line inside my body! haha.

This really is a great treatment, so thankful to have this or I don't know what may have happened to me.

I hope everyone else is doing great!
09-02-2012, 12:28 AM   #21
Keepingfaith
Senior Member
 
Keepingfaith's Avatar
 
Join Date: May 2012
Location: Alabama
Very happy for you! I hope you continue to either gain or maintain that weight! So happy to hear success stories! (:
09-02-2012, 07:49 AM   #22
JSchneider
 
JSchneider's Avatar
 
Join Date: Jun 2012
Location: Claremore, Oklahoma
Wonderful news! I hope you continue on your road to remission!
06-09-2013, 01:34 PM   #23
ccec213
 
ccec213's Avatar
 
Join Date: Sep 2012
Location: Texas

My Support Groups:
Hi guys,
I loved this thread and wanted to give it a boost. I am down to a really scary weight and have burned through all of my medication options. I am thinking of requesting I start a TPN protocol, but have such a track record of getting burned by medical interventions that I wanted to proceed carefully. How are you guys doing, if you are or were on TPN? Do you recommend staying in the hospital or doing a longer-term version at home?

Thank you!
__________________

Caitlin/ late 20s/ Crohn's disease since age 10/ failed all Western meds, now forging the self-care wilderness.

Better Living Through Snark - My blog about chronic illness in short, insomnia-friendly bursts. (At least 20% written on painkillers! Guaranteed! )
06-10-2013, 06:31 AM   #24
JSchneider
 
JSchneider's Avatar
 
Join Date: Jun 2012
Location: Claremore, Oklahoma
Our daughter only did the TPN for 3 weeks, she ended up getting a blood clot and her chest was swelling above her heart from it! The TPN at home was easy, a little nervous at first, but we got the hang of it quickly. After the clot we were told that some people w/ Crohn's are more prone to clots. She had to do shots in her stomach for 6 weeks, that was not fun, but after that we saw a specialist and he said all was well w/ her vein and no signs of clotting problem.
Good luck w/ everything! I'm currently trying to get her off all meds b/c it's been over a year and we've had ups and downs but no long-term remission.
Reply

Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Started TPN - update on successful treatment
Thread Tools


All times are GMT -5. The time now is 03:01 PM.
Copyright 2006-2017 Crohnsforum.com