hi pouchers!

after waiting for insurance approval I started treatment today in a hospital unit. I was given 1 mg of Xanax and since I am severely claustrophobic I thought this would help. I have never taken Xanax before and it just made me sleepy . That wasn't a bad thing. There was a TV angled on top so I could watch while I lay there. There was a tech right outside watching me the whole time. I was in there for about two hours total. They lower the pressure at first very slowly and then raise you up to normal pressure slowly as well. The tube is rigid glass and you are on a Guerney with a pillow. No makeup hairspray Chapstick deodorant jewelry can be worn as they explained that any chemical could potentiall burn the skin. I got  soft cotton scrubs no underwear and that's all. Dr Shen ordered 30 treatments which take place daily Monday through Friday. For me and my job this means I have to take FMLA. The treatment itself just felt like being on a plane during landing and take off. No discomfort at all just minor pressure in ears. After living with pouchitis for so long it seems silly to complain about something so minor.

For my non healing ulcers associated with chronic pouchitis and what appears to be decreased blood flow (ischemia) along the original suture line we are hoping this brings relief. I am happy to share the details of this process should it help others. I was scared not knowing exactly what to expect as people seem to either sugar coat things or over dramatize! I work in health care myself so I am aware of how that can sound to a patient. Everyone is different I know and every hospital is different but I am grateful not only to have this safe forum as a patient but also the support.  Thank you


 

Original Post

Thanks Jan !

dr Shen wants to see me as soon as the treatments are through to see if there is any impact and if so what. I was just scoped by him two weeks ago so we should know something. Today I ditched the Xanax and it was much better. I used guided imagery and took a short nap. 

Third one done they are definitely getting easier now that I know what to expect. Ears pop at random times during the day now. I'm not sure if I was just over tired and chronically stressed from my crazy work schedule  but I can say that I'm super sleepy now. Naps are now part of the treatment! I also had some pretty bad butt burn that is gone but this may just be a total coincidence. Either way I am happy to have what appears to be normal skin in the rectal area for the first time in years. 

Thanks for sharing this. I was at Dr. Shen today and he recommended the same for me. Please keep us updated here. Each additional data point is really valuable. 

Claustrophobia is really the biggest issue for me right now but we knew that would be part of it. I think trusting the person who is monitoring the treatment is very important. I'm hypervigilant and laying still gives me time to ruminate. You would think being forced to lay quietly and breathe for 2 hours would be a gift but as a control freak this is a struggle. 

I know I said this before but nothing at all can go in the chamber with you no extra blankets socks literally the scrubs they give you and that's it -Im very cold --also learned no tampons! A woman with me getting treatment at the same time had to remove her hair extensions actually had to have them cut out! 

i do notice my blood pressure is low when I get out and my temperature is consistently lower. I have absolutely no idea what that means but thought I'd report it. Maybe it's because I'm meditating? It's hard to give any quality of life update as I am off from work and consequently more isolated. Complain as I do about work but it gives me a sense of purpose 

There are several variables that have changed since I started this treatment; stopping high pressure job, stopping weight lifting and cardio 5 x week, stopping coffee. I have also started meditating, reading for pleasure and sleeping more. 

Quick update about 21 sessions done and nearing the finish. So far I've noticed decrease in urgency decrease in output altogether and complete relief from butt burn. I had a serious butt burn issue going on with a fissure and this is the first time in a long time I'm pain free--skin wise. I have noticed my vision is blurry much more so but they say that is common and temporary. The biggest difference in function is the sleepiness. I'm seriously exhausted. Normally I'm a pretty active (hyper even) person who gets a lot done! Now I just sleep in the chamber, sleep for awhile when I get home and then sleep fine through the night. It's crazy how tired I am from this. Gnight!

How did you get your insurance to cover the treatment? My insurance said no way. Even with a doctor recommendation. I've had chronic pouchitis since the beginning.

I know that everyone has a slightly different situation but for me I had chronic ischemia around the suture line with some nasty ulcers that were getting worse. My insurance covered the recommended 30 treatments.  I go on Friday for repeat scope to see if it was successful.

I would imagine that as more data  is published about the improvements from hyperbaric 02 the more willing insurance companies will be to cover.  Insurance companies seem to like standards of care and hard data before they pay. 

I'm finished with 30 treatments and wanted to give an update. I learned a bit about the process of the treatment that I wanted to pass along:

1) panic happens during the descent as the pressure goes up in the chamber. It is like a dive down. Once you reach "depth" a sense of peace and relaxation happens. This is about 15 minutes in. Someone called it the two martini rule. Depth is apparently a similar feeling. Have the tech talk you through to depth the first few times.

2) Get to know your tech/nurse respiratory therapist outside your chamber. This may be a No brainer for some-- My techs switched a few times and I could see a HUGE difference in care. Like most professions there are more skilled folks and then there are not so skilled ones. The educated ones know how to reassure jpouchers and I found that the more I learned the more I could relax. They will need to tell you to take air breaks, put on your mask, etc. Plus you are going everyday so they will become a part of your routine! I brought treats on my last day to celebrate. 

3) eat a little before you go in. This helps with the nausea that sometimes happens during the descent. I noticed that when I had some toast or a sandwich I felt better afterwards

4) you will not have to use the the restroom while inside --I was worried I would have diahrea in the chamber at first but the cramping ,urgency came to a grinding halt while inside there. Two hours of complete freedom from any pouch cramping. 

5) There is not much on the Internet or anywhere else about how this really feels. We are all very different but for me there was no way I could work during this. It is time consuming and physically draining. Your body needs time to heal and rest. If you are considering this please take off as much time as you can from work.

6) there are strip malls and groupons out now for "light" HBOT in "centers" around. Not only did my professionals say that these were a waste of money but very  dangerous. They cautioned anyone against them. The pressure is not high enough to amount to anything and the chambers are not rigid. I've seen prices as low as $90-100 per session but it's not worth the risk of safety. Seizures can happen from too much Oxygen as can nitrogen narcosis. They told me to only go a to medically monitored facility with a physician present.

im happy to answer any questions of course and will keep all of you updated on the pouchoscopy findings on Friday .

Kate

 

 

Kate, Thank you for such a detailed synopsis of your hyperbaric experience. I found it very interesting and informative.

I hope your pouch scope reveals a significant improvement, and more importantly, I hope it is lasting. My main concern with this is if it is all worth it, in the end. It does sound like a prolonged ordeal.

Jan

I saw a small percentage decrease in inflammation overall it helped my pouch and helped with focus on getting healthy. My quality of life improved. I'm not sure if doing it again is ever an option as insurance will likely be the driving factor.  

Interesting... thanks so much for letting me know.  Dr Shen at the Cleveland Clinic gave this option to me if this Alicaforsen clinical trial doesn't work out, or another option would be Entivyo... thanks for your response!

 

I did 40 sessions of HBOT after Shen wrote a script for it.  It was denied at first and then finally approved after sending in script with more info.  Shen said he saw a 20% reduction in inflamation but I saw and felt no difference at all.  He wrote another script and we submitted 3 times and it was denied for further treatment.

My question for anyone is :what does 20% or 30% improvement look like as far as symptoms quality of life or treatment?  

Did you tolerate the 40 treatments okay? Were you in a solitary chamber? 

I did 40 HBOT sessions about a year ago after Shen wrote me a script.  I was denied the first time with insurance.Shen said he saw a 20% deduction in inflammation  after the sessions were finished and wanted me to do more but insurance denied 2 rounds of submissions.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×