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Daughter is almost out of options

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Posted 10/29/2013 12:05 PM (GMT 0)
We met with a surgeon two years ago when they said we had to take it out. She is well aware of what the surgery entails. She is freaked out by the bag (she would have the 3 stage J-pouch). I have no words
Posted 10/29/2013 12:39 PM (GMT 0)
She can work to become less frightened of the ostomy. Before surgery she can meet with an ostomy nurse to look at the appliance and become familiar with the various components. She can also meet young women and men her age who either have permanent ostomies or had temporary ones due to UC and Crohns. If you send me a PM I can get you the contact information for a fantastic support group for young women, Girls with Guts. I'm confident that if she reaches out to them she will feel more empowered. Surgery isn't easy, but if one is surrounded by the right people, it makes a world of difference. I'm 12 years out from jpouch surgery; best decision of my life.

Sue
Posted 10/29/2013 2:58 PM (GMT 0)
Stick with the Vanco and treat the yeast.. You've already treated amoeba with the ailina.

The Vanco may take some time to get it. Serrapeptase will help the biofilms and make the pathogen's cell wall vulnerable.

I'm going to dig up the probiotics that are active against cdiff when I get home later.
Best of luck no matter what.
Posted 10/29/2013 3:49 PM (GMT 0)

electro said...
We met with a surgeon two years ago when they said we had to take it out. She is well aware of what the surgery entails. She is freaked out by the bag (she would have the 3 stage J-pouch). I have no words

I know that there were some surgeons at Mount Sinai that would do a 1-step j-pouch depending on if you are on steroids or not, so maybe she wouldn't need a bag. The surgeon that I met with that did the Laproscopic 1-step was Dr. Harris but he has moved to a NJ hospital since then, either Englewood or Hackensack, I can't remember. My GI highly respected his skills as a surgeon and he was a real nice guy with a good bedside manner when I met Dr Harris.
Posted 10/29/2013 4:52 PM (GMT 0)
It is really better to go with 2-3 steps if one is having surgery for refractive UC; you will get a better outcome. The 1 step has been pretty much eliminated as a choice for IBD patients but is still a good option for cancer or FAP patients. Please listen to your surgeon and go with his or her recommendation. Our healing is compromised due to years of illness, severity of illness, and drug use.

Sue
Posted 10/29/2013 5:05 PM (GMT 0)

suebear said...
It is really better to go with 2-3 steps if one is having surgery for refractive UC; you will get a better outcome. The 1 step has been pretty much eliminated as a choice for IBD patients but is still a good option for cancer or FAP patients. Please listen to your surgeon and go with his or her recommendation. Our healing is compromised due to years of illness, severity of illness, and drug use.

Sue

I agree but I was just trying to give another option for his daughter if the bag really is an issue.

My surgery tomorrow will be step 1 of a 3 step j-pouch. Looking forward to be medicine and UC free very soon.
Posted 10/29/2013 5:47 PM (GMT 0)
Yay Keith! I'll be thinking of you.

Sue
Posted 10/29/2013 6:14 PM (GMT 0)
Thanks Sue,

When I see people like you (I've seen many UC J-pouchers) say that J-pouch surgery was one of the best decisions that they ever made that makes my decision much easier for me, no matter what my outcome is.

I have a great surgeon and I am confident in my decision; looking forward to moving on with my life medicine and UC free.
Posted 10/29/2013 6:39 PM (GMT 0)

electro said...
We met with a surgeon two years ago when they said we had to take it out. She is well aware of what the surgery entails. She is freaked out by the bag (she would have the 3 stage J-pouch). I have no words

Just wanted to say that I had a two step j pouch procedure and I was "freaked out" about the bag too. Although it wasn't the most pleasant thing in the world, I managed just fine for the three months I had it. If your daughter is having a three step procedure then she'll have it a bit longer but honestly, it's a small price to pay to be rid of this God awful disease. That's how I see it anyway.....I was so sick. Surgery was a blessing in disguise for me....it could be for your daughter too. Best wishes for you both and whatever comes her way.

ks1905,
Good luck tomorrow! Wishing you a speedy recovery! :)
Posted 10/29/2013 8:01 PM (GMT 0)
Electro,

my doctor suggested I take 6000mg of turmeric (in capsules) daily. Away from meals. It's helped me greatly, and unlike some of the meds, the body does not grow intolerant of it.

Wish you luck
Posted 10/30/2013 2:04 AM (GMT 0)
electro,

Japanese can halt a flare by filtering out most neutrophils from the blood.

Absent that procedure use N-A-C it reduces it. Morning/evening on empty stomach. Every flare my count is sky high. Until it starts coming down no change.

Wheat grass was promoted by a woman with UC, it stops bleeding, I take it every morning powder with p-seed powder because that converts to SCFA butyrate along with intestinew. They all taste like hell so I blend together and get it over with.. Nice way to gauge your transit time when you see green come through. Slow the transit if its less than 24 hours.

RS Diet, cheap navy beans are maintenance, going off them early results in problems but I never flare on them and eat anything I want.

Good luck.

Article said...

The hallmark of ulcerative colitis is a diffuse infiltration of neutrophils from the circulation into the colonic mucosa. The underlying mechanism for neutrophil tissue infiltration is unknown. One possible hypothesis is abnormal circulating neutrophils. This hypothesis has been previously tested with conflicting results. The aim of our study was to re-evaluate circulating neutrophil function in the absence of several possible confounding factors. To this end, we measured the respiratory burst of circulating neutrophils in response to two different stimuli by chemiluminescence in patients with active and inactive ulcerative colitis being off all medications. Our results show no significant difference between ulcerative colitis patients and controls in peak chemiluminescence, area-under-the-curve and time to peak comparisons. However, 27 % of patients with active ulcerative colitis had an abnormally elevated chemiluminescence to stimuli. In addition, no correlations were seen between disease activity and peak chemiluminescence. Thus circulating neutrophils in the majority of patients with ulcerative colitis do not appear to be either “primed” or hyperactive. This may suggest the presence of local colonie factors that lead to neutrophil tissue infiltration and activation.

link.springer.com/article/10.1007%2FBF01534573

Post Edited (aguywithuc) : 10/29/2013 8:15:16 PM (GMT-6)

Posted 10/30/2013 4:40 AM (GMT 0)
I am so sorry to hear that your daughter is so sick. My 22 year old daughter has been in a flare
for a year and nothing has worked. There was an article in the Seattle Times a few days ago
about fecal transplants. They mentioned Dr. David Suskind from Seattle Children's Hospital:

"At Seattle Children’s, Dr. David Suskind has just finished the first FDA-approved studies of fecal transplants in children with inflammatory bowel disease. Those with ulcerative colitis didn’t see much improvement, but seven of 10 Crohn’s patients went into remission — results similar to those of drug treatments with more potential side effects.

Now, Suskind says, “I think there are very many more important questions to answer.”

So I really hope that you are able to get the fecal transplant for your daughter. If you are interested
in the entire article here is the link:

http://seattletimes.com/html/localnews/2022132117_cdifftransplantxml.html


http://seattletimes.com/html/localnews/2022132117_cdifftransplantxml.html
Posted 10/30/2013 12:56 PM (GMT 0)
Thanks all for your words and thoughts. Just praying we can keep her well enough to get her to Hopkins on Friday.
Posted 10/30/2013 1:38 PM (GMT 0)
This thread is painful, as I too am wrapping my head around the next steps for my daughter. At the "new normal" of 80%, even with the risks of some of the big gun drugs, she wants her own colon.She'd like to wear bikinis and meet new men without having to describe an altered body...your daughter would too. We are holding out for Vedolizumab. On the other hand, if it's Crohns, then the surgery might not be the right choice. The osteomy boards are filled with complicated patients, so we are right to hesitate. You are smart to investigate with high level docs, and if she gets too sick, surgery would be even tougher. This disease is so very hard. Sorry for you and for her. Hugs.
Posted 10/30/2013 3:44 PM (GMT 0)
Katmom, Whole different ball game when it's your kid vs. yourself. Our daughters both have the same concerns about the self image and the effects of the surgery on their new relationships and who wouldn't. As a happily married 50 something year old that aspect of the surgery would not be much of an issue. But thinking about our kids, heartbreaking.
We will continue to work on her mental state as much as we can, sometimes I think that is harder then the physical health to treat. In the end, if she needs the surgery to have a life I know she will adapt. That is the human spirit and my daughter has a strong one. I will add your daughter to my nightly thought list.
Posted 10/30/2013 4:27 PM (GMT 0)
electro,

your DD has tried only the doc wants her to try. What about Sulfasalazine. Its old medicine, very cheap and works many a times. My mom, who had pancolitis is free of all symptoms for last 13-14 years (I admit, its a rare exception), but all she took was Sulfasalazine and a course of Prednisone. She is irregular with her meds as it is, but discontinued at whim (mainly because of financial constraints that the family was going through).

In addition to that, she did cabbage and wheat germ juicing religiously. I did that (not religiously) and it didn't work with me.

NAC mentioned above is a supplement that helps, proved in the literature, but its not a medication to get your out of a flare, so if steroid are not working, give a try to LDN. It works with a small percentage of folks.

I am not fear mongerer. Surgery is must when all fails but from where I see, your DD has not tried everything. Very difficult to see the child suffering, still knife decision is not that easy either.
Posted 10/30/2013 5:50 PM (GMT 0)
Surgery can be done lapro; thus eliminating huge scars for those concerned.

Sue
Posted 10/31/2013 9:03 PM (GMT 0)
I had my first step done yesterday (colon is removed) for my J-pouch, everything went great and even no pain today. My intestines woke up in about 6 hours which is extremely fast (some people take few days) and I'm walking around today without issues (but not trying to over do it).

When I woke up this morning I felt great, I felt like my body wasn't being poison anymore by my colon. Surgeon said that my colon was in really bad shape, it was so bad that he had to cut me open after they tried to get it out laproscopically so I have an incision.

Waking up this morning I wish I had surgery years ago because I feel so much better, I can't remember the last time I actually felt 100% healthy.
Posted 10/31/2013 9:49 PM (GMT 0)
Ks, thats great for you! I do think surgury is last resort. Esp if it is not your own. Being a mother i know i would ( and might have to ) make sure my girl has tried every thing twice before i would do that! Oh yes, i would def kick that an down the road.

Lots of complications from surgery! Unfortunatly sometimes we have selective listening and will go that route. I did a surgery
Once and i was on a forum and every one said how great it was! That was all i heard. The morning after my "great" surgery I cannot tell you how sorry i was! It was the biggest mistake ever!

Now it was not a life or death and thank god i could reverse it but i was sucked into the forum and i decided never to do that again.

Pls see more doctors and try more treatment untill there is no other avenue or question about what must be done.
Good luck
Posted 10/31/2013 10:09 PM (GMT 0)

deltaforce said...
electro,

your DD has tried only the doc wants her to try. What about Sulfasalazine. Its old medicine, very cheap and works many a times. My mom, who had pancolitis is free of all symptoms for last 13-14 years (I admit, its a rare exception), but all she took was Sulfasalazine and a course of Prednisone. She is irregular with her meds as it is, but discontinued at whim (mainly because of financial constraints that the family was going through).

In addition to that, she did cabbage and wheat germ juicing religiously. I did that (not religiously) and it didn't work with me.

NAC mentioned above is a supplement that helps, proved in the literature, but its not a medication to get your out of a flare, so if steroid are not working, give a try to LDN. It works with a small percentage of folks.

I am not fear mongerer. Surgery is must when all fails but from where I see, your DD has not tried everything. Very difficult to see the child suffering, still knife decision is not that easy either.

I agree sulfasalazine/pred/cabbage juice,NAC,Qing Dai, RS Diet and Pysillium Seed powder with Wheatgrass all are terrific. Spinach and salmon too.
Posted 10/31/2013 11:49 PM (GMT 0)
ks1095,

Congratulations! I've been on this board long enough to know how hard you tried to keep the colon; and how many unsuccessful treatments you tried. Nobody has tried harder than you to stay away from surgery; I was also like you and I considered just letting the disease take me; I couldn't take it anymore. I don't think anyone truly knows how difficult the decision is and that we don't take this lightly. Surgery was the last thing I wanted; as it turns out surgery was exactly what I needed. Here I am 12 years later engaging in life 100%, hiking and traveling the world to my desire. These past 12 years my health has not controlled my life and I take no drugs. Here's to hoping you have the same experience.

Sue
Posted 11/1/2013 5:38 AM (GMT 0)

DMC2011 said...

Lots of complications from surgery! Unfortunatly sometimes we have selective listening and will go that route. I did a surgery
Once and i was on a forum and every one said how great it was! That was all i heard. The morning after my "great" surgery I cannot tell you how sorry i was! It was the biggest mistake ever!

Now it was not a life or death and thank god i could reverse it but i was sucked into the forum and i decided never to do that again.

I would never base a decision like surgery on information from the Internet. My decision was made from recommendations from my GI who I've had a long term history with and completely respect, the surgeon I meet with and my own experience with UC and my disease getting worse and worse. It was a quality of life decision.

I have said it was nice to hear other people's (like Sue) own input from their experiences with surgery and it "being one of the best decisions they ever made" it just helped reassure me in my decision but my decision for surgery was never made for that reason.

For my surgery I chose one of the top surgeons in NYC and the Country with lots of experience; my GI highly recommended this surgeon. I would never go for J-pouch surgery with a surgeon who didn't have similar credentials, it's too big of an operation not to, it's not like an appendix removal.
Posted 11/1/2013 6:03 AM (GMT 0)
Good luck, I was once where she was but Remi is currently doing it's job.
Posted 11/2/2013 12:19 AM (GMT 0)

ks1905 said...

DMC2011 said...

Lots of complications from surgery! Unfortunatly sometimes we have selective listening and will go that route. I did a surgery
Once and i was on a forum and every one said how great it was! That was all i heard. The morning after my "great" surgery I cannot tell you how sorry i was! It was the biggest mistake ever!

Now it was not a life or death and thank god i could reverse it but i was sucked into the forum and i decided never to do that again.

it's not like an appendix removal.

Although they DO throw in the appendix removal for free wink Hahaha, sorry I cracked myself up. I am also sorry to derail this thread I just wanted to say congratulations ks, I am glad you are doing so well and that everything went according to plan!!
Posted 11/2/2013 2:37 PM (GMT 0)
Just returned from our meeting with the doctors on FT. Here is the latest on one of the few top hospitals doing FT for children. They have done two. They are only doing for CDiff, which we knew. That means you must have multiple attempts at curing CDiff with the typical antibiotic route. You must have followup tests to confirm CDiff. So the next test can be done at 30 days, for us that is this week. In the meantime, my wife and I will start the process of being tested to make sure we are donors. They are only doing one transplant. They have had success with both cases of clearing the Cdiff and in the first case are seeing positive results towards the UC. As we knew from these boards, this is a viable option and very interesting what the future will bring as the medical community gets on board. We did leave there with a positive feeling, just hopeful it will be an option for my daughter. In the meantime they recomended adding Humira to her Imuran regime.
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