Community Forums

Hyperbaric oxygen t...
 

Hyperbaric oxygen treatment update  

Page 1 / 2
  RSS

madrikh52
(@madrikh52)
Registered
Joined: 2 years ago
Posts: 41
September 22, 2019 6:48 pm  

Hello all, I just finished week 3 (of 9 or 12 weeks, depending) of my HBO2 treatments. All is going well. My sacral pain might be a tiny bit better but I'm still not sure. Other symptoms that I have from pelvic radiation are still present. I really wasn't expecting any changes so soon, but you never know. One thing that is interesting is I'm very tired. I have dealt with intermittent fatigue for much of my life but this is worse than that. 

I will try to keep you posted (literally!).

Marci


LK and SqueakyandLiza liked
Quote
SqueakyandLiza
(@squeakyandliza)
Registered
Joined: 7 months ago
Posts: 330
September 22, 2019 10:24 pm  

Hi Marci,

I’m glad you were able to get things worked out to get your hyperbaric treatments. I am still doing mine at my friend’s house. Not sure if it is helping, but I don’t think it is hurting. I had an experience with ear problems the other day. We had to stop and release pressure twice until my ears finally popped. That has only happened the one time where they wouldn’t pop while the tent thing was pressurizing. It was pretty painful though. I think it was congestion causing it. 

I hope you start to see results soon!!

-Liza
“May your day be bright and your bag be light.”


LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 666
September 23, 2019 1:33 am  

Marci and Liza,   I am so glad you are able to get hyperbaric treatments. I hope you both soon see the changes they should bring!  Ear pain, yikes nasty stuff in a chamber. 

Marci, try and just go with the fatigue. I have had such low iron (2 and now 5 with low hemoglobin as well ) have you had your iron tested? I hope you can solve this issue soon. Fatigue like that is no fun on top of your other issues. I hope things change for you both soon, it's time.

Linda 

Linda


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 6 years ago
Posts: 2534
September 23, 2019 9:54 am  
Posted by: @madrikh52

One thing that is interesting is I'm very tired. I have dealt with intermittent fatigue for much of my life but this is worse than that. 

Hmm. Is this a side-effect of the treatment or do you think the two are unrelated? Sorry that you are going through that kind of fatigue - I know how awful it can be. 

Let us know if any other updates as it's an interesting topic! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


LK liked
ReplyQuote
SqueakyandLiza
(@squeakyandliza)
Registered
Joined: 7 months ago
Posts: 330
September 23, 2019 10:16 am  

As for me, it is relaxing, and I often take a little nap during the treatment, but I don’t think it is making me more tired. I don’t know that it is giving me more energy, like I hoped it would, but definitely don’t think it is negatively impacting me.

I had an appointment for my wound a week or so after starting, and the tunneling below the wound was not improved at all, but I’m hoping it just hadn’t been enough time and that there will be improvement next time  🤞Though the wound is draining as much as ever.  😕

 

-Liza
“May your day be bright and your bag be light.”


ReplyQuote
madrikh52
(@madrikh52)
Registered
Joined: 2 years ago
Posts: 41
September 24, 2019 7:38 pm  
Posted by: @veganostomy
Posted by: @madrikh52

One thing that is interesting is I'm very tired. I have dealt with intermittent fatigue for much of my life but this is worse than that. 

Hmm. Is this a side-effect of the treatment or do you think the two are unrelated? Sorry that you are going through that kind of fatigue - I know how awful it can be. 

Let us know if any other updates as it's an interesting topic! 

It can be a side effect though I'm not sure I understand why. Both  the doctor and the technicians have told me to consider it normal and that hopefully it will resolve soon.

 

Marci


LK liked
ReplyQuote
madrikh52
(@madrikh52)
Registered
Joined: 2 years ago
Posts: 41
September 24, 2019 7:42 pm  

I have good news from my gynecologist. Since my radiation damage is all internal, my GYN is one of the few people who will be able to visually compare tissue before, during and after HBO2. I did have to have some tissue removed and sent to be biopsied, but she did say that my vaginal tissue looks better than it has in a few years! This has to be due to HBO2, so such news gives me hope for further healing. 

I apologize if this is TMI for anyone. But pretty much everything in my pelvis has been damaged, so it is what it is.

Marci


VeganOstomy and LK liked
ReplyQuote
SqueakyandLiza
(@squeakyandliza)
Registered
Joined: 7 months ago
Posts: 330
September 24, 2019 8:36 pm  

@madrikh52

Marci, that is such good news!!!  I wish I would receive similar good news about my wound, but not yet. 😕 Keep it up. I’m heading over to mine in about 15 min. 🙂

Oh, and there is no such thing as TMI here. 😂😂

-Liza
“May your day be bright and your bag be light.”


LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 666
September 24, 2019 9:32 pm  

Marci & Liza

Marci, that's just fabulous to news! This is another reason why this site is so important. We  talk openly about such things and help someone else along their journey doing it. Having not talked about my stoma or issues I have for many yrs. I can tell you it feels much better to talk about these things, get feedback, learn and encourage others. Dad had radiation, I know it can be a necessary evil,  but I learn more every day of the damage it can cause. Thank you for openly sharing your experiences. I wish you and the possible silent others, the best results possible.

Linda


ReplyQuote
madrikh52
(@madrikh52)
Registered
Joined: 2 years ago
Posts: 41
September 25, 2019 10:17 am  

@squeakyandliza

Thank! Good lucky to you with your treatments!

Peace,

Marci


ReplyQuote
madrikh52
(@madrikh52)
Registered
Joined: 2 years ago
Posts: 41
September 25, 2019 10:18 am  

@dlkfiretruck

Thank you Linda. I agree, much better to talk about this stuff than to suffer alone!

Marci


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 6 years ago
Posts: 2534
September 25, 2019 11:09 am  

@madrikh52

That's wonderful news! I hope it continues to get better for you!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


ReplyQuote
SqueakyandLiza
(@squeakyandliza)
Registered
Joined: 7 months ago
Posts: 330
October 17, 2019 1:15 am  

After taking about 2 weeks off from hyperbaric treatments, I have been back at it for a couple days. Between being so busy my last week at work and then having a cold last week where the congestion wouldn’t allow my ears to clear in the pressure,  I had to stop for a while. 

I saw the dr 6 weeks ago after only about a week of oxygen, and it didn’t seem to have improved my wound healing. Now I have another appt tomorrow, and I’m really hoping the extra 4 weeks of oxygen has made a difference. Any positive thoughts sent my way will be greatly appreciated!!

-Liza
“May your day be bright and your bag be light.”


Tony liked
ReplyQuote
sjlovestosing
(@sjlovestosing)
Registered
Joined: 2 years ago
Posts: 331
October 17, 2019 8:52 am  

Will do, Liza, and will put in a prayer as well!

Stella


ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 666
October 17, 2019 10:22 am  

Hello there Liza...l can imagine a little bit, how your feeling.  I so hope that your treatments have added the healing affect you need.  I have gone to a few apts. with bated  breath & let me tell you...it "is" much better to be asking questions afraid of the answers then not to ask them at all.    So, make a quick list if you have not, & ask the questions that scare you the most. Try and be in control of your own fears, big or small, and give them a destination. You have a great,  caring support team here & we have all been in the fear factor shoes. So, take a deep breath, stand tall on your way in and ask your questions. You can do this!  The way l see it, fear is because we do not know the answers we need to know. Take your hubby by the hand &  make  sure and ask if you will still have the second  stoma after surgery.  May the best outcome be yours!!!

Linda


ReplyQuote
SqueakyandLiza
(@squeakyandliza)
Registered
Joined: 7 months ago
Posts: 330
October 17, 2019 10:49 am  

Thanks Stella and Linda!!

Linda-I just have the one stoma—it just has two openings. The regular opening to the right side and then the mucous fistula on the left side that also gets some output. At some point, I want them to fix Squeaky so there is just one opening and it goes straight out. That and fixing this darn hernia, which feels like it keeps getting bigger. 

I am working on getting an appt for a second opinion, so will hold off on letting current doc schedule any surgery until I’ve had other appt. Especially because current doc is wanting to remove rectal stump. I definitely want a second opinion about that!!

 

-Liza
“May your day be bright and your bag be light.”


LK and john68 liked
ReplyQuote
sjlovestosing
(@sjlovestosing)
Registered
Joined: 2 years ago
Posts: 331
October 18, 2019 10:55 am  

Hi again, Liza. I understand your fear about having a rectal stump removal. That is a decision that you will have to carefully weigh as there is not turning back. You are wise to get a second opinion.

When I first found out that I had colorectal cancer, the doctor who did my colonoscopy told me in no uncertain terms that I would need to have my anus and rectum remove and would live my life with a permanent colostomy. Needless to say, his bedside manner was not the greatest. However, the surgeon also confirmed this. So, after I got over the shock and had a good cry, I "pulled up my big girl pants" and did all the research I could about living with an ostomy. This website was my first hopeful look at it, and I have never regretted having the operation done. I am here with my loved ones and living a great life. God has truly been good to me. 

Praying that God will direct your path in all of this.

Stella 


ReplyQuote
SqueakyandLiza
(@squeakyandliza)
Registered
Joined: 7 months ago
Posts: 330
October 18, 2019 11:14 am  

Thanks Stella!!

My appt yesterday went okay. When he (Tim, the surgeon’s assistant) measured the wound, the tunneling below the wound was a little smaller. So possibly, the hyperbaric treatments are helping. I know, I’m clinging on to any hope I can get. Tim was very supportive of our quest for a second opinion and said he was curious what someone else would find. 

The reason they said they want to remove the rectum is because there is still significant Crohn’s there and there is a fistula between the rectum and the wound, and they think that is why the wound won’t heal. I am waiting to hear back from the GI, to find out his plan for addressing the Crohn’s. I am taking Humira now, but that is the only med I have tried, so maybe he will want to try something else to see if he can get the Crohn’s under control. 

There is a lot up in the air for me right now, and I’m glad you guys are here as a sounding board as they start falling into place. 

-Liza
“May your day be bright and your bag be light.”


LK liked
ReplyQuote
Tony
 Tony
(@ileostony)
Registered
Joined: 8 months ago
Posts: 198
October 18, 2019 6:33 pm  

Hi Liza,

 

How long have you been taking the Humira? If it's been more than 3 months, it should be working. I took it, and that's my experience. If it hasn't started to work after 3 months, then it's no surprise the doctor might want to try something else. So glad I don't have to jab myself with those enormous pens.

 

Fistulas are nasty little bugger-boos to deal with when someone has Crohn's as flares tend to begin where different types of tissue connect or where there are suture lines.

 

Plenty of doctors do welcome second opinions, those who recognize they aren't right about everything where their medical experience is concerned or that there might be an angle they haven't considered. Good to know you have one of the good ones taking care of you.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


LK liked
ReplyQuote
SqueakyandLiza
(@squeakyandliza)
Registered
Joined: 7 months ago
Posts: 330
October 18, 2019 7:19 pm  

Hi Tony, 

I’ve been doing the Humira for 10 months. The only thing I’m not totally sure about is if the injections are getting where they are supposed to. I usually do them on the non-ostomy side of my tummy, but between the gaping wound and the hernia, it doesn’t leave me much room. They hurt much more in my leg so I prefer to do them in my tummy, but I’m a little worried I might be injecting them right into the hernia??  So I did the last one in my thigh and will do the same for the next couple and see if it makes difference. 

I agree about the fistulas— I also have one from an abscess 12 years ago. The surgeon doesn’t think it will ever heal, so they put a seton ring in to help it drain. Hopefully this isn’t  TMI for anyone, but the seton ring is like a fishing line that goes from the hole in my butt cheek where the abscess burst through up the fistula to where the abscess was and then out my bum where it ties in a knot to the other end. It has to be replaced every 6 months and it is extremely painful!!  The dr felt so bad this last time that he promised me pain meds next time both before and after.  I would argue with them about just taking it out, since I went 11 years without it, but there has been a fair amount of drainage lately. 😕

It is so easy to feel overwhelmed when I think about all this. So I’m trying to focus on the positive. The tunnels were a little smaller. I still have access to the hyperbaric treatments,  I have gone out for a walk almost every morning since my last 5k on Saturday, and am feeling pretty good about that. I filed a claim for unemployment and they sent me a letter saying I could apply for a class they have to teach people how to start their own business, so I will apply for that. Plus I have great support here!!  Thanks!!

-Liza
“May your day be bright and your bag be light.”


LK liked
ReplyQuote
Page 1 / 2
Share:

Please Login or Register