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surgery vs. suffering?

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Posted Yesterday 6:31 AM (GMT 0)
i've noticed that quite a few members here have been suffering with UC for many many years, having flareups often, etc. and i'm wondering why those of you who haven't had success with meds don't opt to get the surgery? even though i know that there are risks to the surgery, i'd much rather take the risk and wait through the long recovery time than to always feel nervous that i'm going to flare, or to always be worried (as i am now). i haven't ever responded well to meds and my doctor brought up the possibility of surgery, so i just wanted to know why so many of you have avoided it (even if your UC is really bad). thanks so much!
Posted Yesterday 6:37 AM (GMT 0)
I know I would do the surgery....there is a huge comfort regarding other members experiences who have had it done, I would possibly try some of the immunomodulators, but looking at the long-term, surgery would probably be the best bet for me.
The adjustment of dealing with it would be difficult, I know, but again...I think the support would help beyond.
quincy
Posted Yesterday 6:39 AM (GMT 0)
wait, so why don't you do it?
Posted Yesterday 6:43 AM (GMT 0)
my UC is controlled....no reason to even consider it at this time.

But, we don't know what tomorrow brings....surgery is but one option...doesn't mean I'll accept many of the others, which lessens the probabilities.

quincy
Posted Yesterday 2:15 PM (GMT 0)
From what I have observed over the years is that those who are sick enough to warrant surgery believe that their quality of life will be lower post surgery and they don't want to risk it. Many people think that if they choose surgery there are choosing the devil they don't know over the devil they do know. Some also hold out because they think a better drug or a cure is right around the corner. Other reasons are the misunderstood concept of higher frequency with a jpouch, pain of surgery, recovery time, etc. And then again it's tricky because as sick as you are you have great faith in going into remission. So making an elective decision to have surgery comes with a lot of thought and research, I would hope.

I cycled through all those thoughts before having surgery. My GI tried to convince me that a jpouch was a bad choice and that I would have permanent diarrhea (so not true!). In my case no one was supportive of my decision and there must have been a higher power looking after me because I finally decided that I was more afraid of long term side effects from prednisone and the other 20 pills per day than I was of surgery. For me surgery has been the best choice and I wished I had done it sooner.

Sue
Posted Yesterday 2:43 PM (GMT 0)
I think Suebear has said it all on why people put off this surgery. It is mostly fear of the unknown. My son has had UC for over two years that just got worse and worse with every flare. We were terrified by surgery. Our decision was finally made by the fact that he was so sick and all the docs we spoke to, not just surgeons, said that surgery was not a perfect solution but it was a pretty darn good one and that over 95% of people, a year post surgery, say they are happy they did it (even though it is not a walk in the park). In Sept my son had his colon removed and will have a J pouch built in late January. I can tell you this for sure.....It was absolutely the correct decision. He is completely healthy and has more energy than he can remember. We know that there is a long road ahead after the pouch is built and that there most likely be bumps in the road but it is all doable since he has his health.

I wish you all the best...it is a hard decision
Cathy
Posted Yesterday 4:00 PM (GMT 0)
If at 18, when I was first diagnosed, my GI had told me all the drugs I would be on plus been able to tell me what each flare would be like, and how long they would last then I would have had enough information to make the surgery decision. They still can't do that; you might have one flare and no more. My first flare ended up with mild cramping, mucus and blood. It was cleared up using 15 mg of prednisone in a short time and I finished college thinking I was normal. During my first 15 years with UC I had other flares and tried 5-ASA’s and natural remedies but always ended up having to use steroids to get better. I’d have 1-3 month flares and years of remission in between. More prednisone required each time.

The last ten years gave me much more severe flares requiring more potent medication and higher dosage steroids but I still get better. So when do I throw in the towel? Last week I was ready. I went to Youtube and watched instructional videos people posted showing living with an illeostomy and having the two part J-pouch surgery. I pictured how it would affect my life or limit my activities but I was mentally prepared it might have to happen this time.

So last week I raised my steroid again (to 80 mg) and I am getting better.

I've suffered through many flares but medication has always brought me into full remission. Last time it was about three years with no symptoms and a clean colonoscopy. In remission I have a wonderful life with vacations to the beach, water and snow skiing, swimming, mountain biking, running working out, traveling and playing with the kids. I feel so happy having normal bm’s out my healthy colon. I would have a hard time, confidence wise, having sex with the wife after surgery too (and I like doing that as well). I may have to have surgery next time but I believe that I will make it through once again.

There are also so many new treatments that come up every 4-5 years. There was no Remicade for UC when I was diagnosed, no study about whipworms, and no VSL #3 double blind studies. So, who knows, if I make it into remission and last another 3 years they just might have a safer drug that works.

It’s no easy decision but I haven’t even tried everything that some folks in here do to keep them from getting a bad flare once first sign start.
Posted Yesterday 6:14 PM (GMT 0)
i wonder this all the time when i see the posts about how sick people are and think back to how sick i was. And honestly, i dont know i waited so long, i dont think surgery even crossed my mind as a choice. I just kept suffering. But when my son was one and i realized i was missing his life and that i would just keep missing it. I decided to ask about it. I actually went to the dr asking for it, and he convinced me to try remi, which i did, to no avail. And there my poor baby sat, in the bathroom with me, drawing on the shower walls with those washable crayons, while i used the bathroom. For hours. And i didnt get to go swimming with him, or take him to the store or any of those things.
And so i thought about it some more, and i was like I AM doing this. I might hate my life afterwards, but i KNOW I HATE it now! And i read story after story of people who were happy. And i thought about getting rid of the 15 pills i was taking, not counting the tons of immodium i was taking, secretly hoping i would get toxic megacolon and not having to make the decision myself. And i realized this was crazy, i could be cured, i could BEAT uc and live my life and i went back to the dr and i said, either you find someone to take this out, or i will. And right then, i honestly would have just cut myself open and ripped it out, myself. Now logically, looking back i now that was the steriods, lol. But i had just had it. So i made my choice and went to the surgeon and told him i wanted a perm ileo and he said ok, thats a good choice for you. he didnt try to talk me into a different surgery, he listend to me that i had talked to people that i had read about it that i had talked to my GI and he was respectful of my decision.
Anyway, so after 8 years of suffering, i kicked my stupid old colon to the curb!
Did i worry about a cure being found? sure, i actually thought, you know i am gonna wake up and on tv they are gonna announce a cure for UC has just been found! But logically i knew that probably wasnt going to happen. And even if it did it would be years.
Did i worry about my quality of life? Sure i did, and i worried about some crazy stuff! You know what was almost a deal breaker for me? I didnt think i would be able to do a cartwheel with a bag. I hadnt done a cartwheel in 10 years, what made me think i would need to do one is beyond me. BTW I can do a cartwheel, not a good one, but i can do it, lol.
Actually i can do everything and more.
So why did i wait, i really honestly do not know. I really dont even know what made me think of having surgery, but i know when i made the decision, but i dont remeber thinking about it before that. I just decided it, one day, out of the blue.
best decision i ever made!
Posted Yesterday 8:39 PM (GMT 0)
I've wondered the same thing as well. My very young child was diagnosed with UC (pancolitis) four months ago. I was distraught (still am actually) and the thought of her living a lifetime on meds scares the hell out of me. She was admitted to the hospital for two weeks and put on IV pred. For the first few days it didn't seem to be working and the GI then told us the next steps were remicade or surgery. Luckily it worked! However, had we have had to chose (and God forbid if we have to chose in the future) it would have been/will probably be surgery. I don't know what caused this in my child. She has been raised on an organic, vegetarian diet full of whole grains. She rarely ate processed food. Organic chocolate or icecream was a treat. She had one dose of antibiotics at birth and that might have done it, who knows? But I don't think I could live with the potential consequences of putting something like remi into her system if it wasn't a life or death scenario. Surgery does scare me too and I know it's not to be taken lightly (though the GI was pushing for it over remi) but I come (unfortunately) from a family who have had major surgeries (several brain surgeries, kidney transplant on the horizon) and thankfully all involved have overcome very difficult times and live great successful and fulfilling lives. That's what I want for my child and I believe, if necessary, it can happen without a (literally) bloody colon! Having said that, it's very early days for us, she's on the scd, lowerish carb (a bit of wolfgang lutz thrown in), doing some natren probiotic (jini patel) and we're looking to start her on ayurvedic meds as well soon, if we can get them from india somehow! She's also been taking l glutamin, fishoil, coq10, cocounut oil/water/flour, pomegranate juice, wheat grass juice and I can't remember what else! We shall see but I pray it works and if not that this is in fact UC and the colon can come out if necessary. Thank you all for posting here, I find it very helpful and informative and sometimes even inspiring.
Posted Yesterday 11:30 PM (GMT 0)
I'd like to keep all my body parts and I'd like to keep them functioning as they're meant to be. Especially the colon. That's a big and very important organ, not just physiologically but in other aspects: emotionally, mentally, etc...I'm lucky I haven't gotten to that point with the disease. I'm more than hoping and very optimistic that I'll never get to that point.
Posted Yesterday 11:46 PM (GMT 0)
For me, the thing was that surgery is so final. If that amazing drug that would control it comes out two months after your surgery, you can't put the colon back in. In my case, just as I started really contemplating surgery, Remicade came out. I hope it will continue to keep me in remission until the FDA approves the next new drug for UC.

I also think age is a factor. If you're younger, it makes good sense to give surgery strong consideration. For those of us who are middle aged or beyond, contemplating losing a year or so having and recovering from surgery has a completely different look.
Posted Today 12:12 AM (GMT 0)
The permanence of surgery kept me from considering it for quite some time, but quite frankly, I am sick of feeling unwell ALL the time. Remicade helped for quite awhile, but six weeks from today I am having the first step surgery done.

For my first few years with UC I was adamant about keeping all my organs intact, as a previous poster mentioned. My GI, from the beginning, said he'd do all he could for me medically, but any time I wanted off the roller coaster I could have surgery and consider myself "cured." I still find that an odd thought -- amputating the broken leg to cure you of it? But the surgery is considered the cure and I am sooooo over having UC.

I get occasionally freaked out when I think about what I am going to be doing, but the pluses seem to outweigh the minuses for me at this time. No more worries about colon cancer for one thing, no more colonoscopies, no more medications with the fear of long-term effects and the expense. No more worries if my insurance will keep okaying the Remicade infusions at such a huge cost. Also, I have concerns about contributing to the high costs of health care (my meds are SO expensive and in the long term surgery is a much more cost-effective way to handle UC).

What started changing my thinking was how many people on the j-pouch.org board saying that their only regret was not having done it sooner. So I forced myself back to the gym despite my fatigue most days to get myself as healthy as I could before surgery so I will have a better chance of sailing through without complications. I also stepped up my work schedule, accepting more clients over the year so I could sock away enough money to not have to stress over not working for the recovery time. Would hate to have money issues force me back to work too soon and then bust a stitch or something.

So I guess the answer is, it's really a journey -- many people respond very well to one or more medications and UC becomes just a chronic issue managed with a daily pill (or nine!). For others it's just intractable and nothing seems to work. For the latter, stubbornly holding onto a diseased organ out of fear of the unknown can be cured simply by doing more research and consulting with a surgeon. Yes, the colon is an important organ, but when it's pulling down your whole system, you have to sacrifice it for the good of the whole body.

Meesh
Posted Today 12:20 AM (GMT 0)
I agree, the colon is important and it surgery would be a very difficult decision to make for our daughter (especially since we'd be making it for someone else) but then I don't take the decision to put poison like remicade into her system lightly either. If you are one of the unlucky ones to have a serious side effect of one of these meds (lymphoma etc) they really won't give a flying _. They're just following protocol after all. I pray that "they" are close to a cure or at least a better, safer treatment for this disease, but I don't really believe it will happen anytime soon. Maybe in my daughter's lifetime but then they don't really know much more about this disease than they did 50 years ago. They're just throwing drugs at it and will continue to do so because they'd lose too much money if they actually cured it. I half believe that the "cure" is out there somewhere (or "cures" because there are likely multiple causes of this disease) but it's just a matter of finding what works for each person. If not cure (I know that's a loaded word) then at least less invasive treatment. It would be great to have a functioning colon, as someone said, but I think the original poster was asking about those whose colon's really weren't doing that anymore and causing pain. I don't see how a colon is more important emotionally or psychologically than any other organ?
Posted Today 12:21 AM (GMT 0)
"Yes, the colon is an important organ, but when it's pulling down your whole system, you have to sacrifice it for the good of the whole body."

Thats a wonderful way to put it!
While i know this isnt the same, just a little metaphor.  Its like having a rose bush with a diseased branch.  you can leave the branch and the flowers wont be as pretty and eventually it will take over the whole bush.  Or you can cut off the branch and the flowers and the bush will perk back up.  

Posted Today 12:30 AM (GMT 0)
killcolltis-to let you you know, when my son was about 3 he started having some blood and mucous in his poop and i freaked, convinced it was UC, and i looked at my husband, and said, if its UC his colon is coming out! And my husband agreed. So if you make the surgery decision, people would understand. Shaz, who is on the ostomy board, had hers out at 10 (i think) and she is very happy with the decsion her parents made for her. she would be a great person to talk to you if have questions.

But anyway, there have been studies showing that the mind and gut are connected, something to do with the chemical balances. And that having a "gut feeling" about something, might actually have some merit. However i cant say that i have noticed any difference, and i still have instincts about the things just as i did before.
Posted Today 12:35 AM (GMT 0)
     This is so individualized.  I have suffered with ulcerative proctitis for over eleven years.  When first diagnosed, prednisone and Asacol led me to a two year remission.   Believing, foolishly, that I was "cured", I went off the Asacol.  When I flared the second time, the doctor placed me on Colazal along with the prednisone once more.  Again, a two year remission.  This time I stayed on the Colazal.  Third flare two years later and he started me on the 6MP, again with the prednisone and Colazal.  Long story short, flares started occurring yearly, lasting longer and higher in intensity.  Prednisone has given me osteoporosis, high blood pressure and with my last two bouts, all this year, high glucose readings.

     I am 63 yrs old and the GI surgeon I consulted with said to try all options before even considering the surgery.  I suppose my age and my overall health does not make me a good candidate for the surgery.  My GI doctor tried talking me into Remicade two years ago but I was too frightened to try it.  I was so sick this year I finally threw in the towel and said...let's do it.  Now I am sorry I didn't listen to him in the first place and go on it two years ago.  What held me back was a positive PPD test done over 40 yrs ago.  When his nurse gave me the test a week before I started Remicade, it was it was negative.  He took me off the 6MP a week before I started Remicade and I am down to 20 mgm of prednisone and weaning down 5 mgm every five days.  He hopes to have me off the Colazal too eventually and only on the Remicade.  I noticed significant improvement two days after my first infusion. I had my second infusion yesterday.

     If this drug can buy me ten "good" years, I have a lot to be thankful for.  However, if I were young like most people in this forum, I still believe I would give Remicade a shot before removal of the colon.

Posted Today 12:41 AM (GMT 0)
killcolitis, I don't think Remicade is "poison." Like any other medication the risks vs benefits need to be weighed by the individual (or by their parents or proxy if they are unable to make the decision themselves due to age or other reasons).

For may people, Remicade helps a great deal and they don't experience side-effects. I tolerated my infusions very well, never had an issue with it, never felt tired after as some people mention. My first infusion had me feeling well by the next morning. My problem now is the frequency of my infusions has been increasing and while I am still not having any bad effects, the medication just isn't working well for me. So my GI and I feel that the benefits no longer outweigh the risk of whatever long term effects may surface.

Apparently the lymphoma risk is very slight and the lymphoma goes away when the medication is stopped in most of those already rare cases.

I've seen a couple of posts from post-surgical people who said their surgeons noticed a hardening of the pancreas and they are blaming the Remicade, but there's no way of knowing for sure -- the auto-immune issues themselves could be the cause of that.

Whatever you decide to do, thinking of any medications as "poisons" does not do anyone any good, better to think of them as tools -- you're very careful using sharp tools, are you not? ;-)

Meesh
Posted Today 12:50 AM (GMT 0)
It sounds like everyone on this post is in an entirely different place in their disease and lives. I believe we are all making the right choice for ourselves or others based on the circumtances we're presented with. Good discussion. If meds don't work it's sort of a no-brainer. If your child is faced with taking decades of immune altering medicines with no assurance of acceptable health then surgery would seem appropriate. Although I might try Remicade to achieve remission in my daughter then stop it and see it 5-ASA's with VSL#3, et al can retain remission...at least that's what I'd try with my two girls.
Posted Today 1:01 AM (GMT 0)

suebear said...
From what I have observed over the years is that those who are sick enough to warrant surgery believe that their quality of life will be lower post surgery and they don't want to risk it. Many people think that if they choose surgery there are choosing the devil they don't know over the devil they do know. Some also hold out because they think a better drug or a cure is right around the corner. Other reasons are the misunderstood concept of higher frequency with a jpouch, pain of surgery, recovery time, etc. And then again it's tricky because as sick as you are you have great faith in going into remission. So making an elective decision to have surgery comes with a lot of thought and research, I would hope.

I cycled through all those thoughts before having surgery. My GI tried to convince me that a jpouch was a bad choice and that I would have permanent diarrhea (so not true!). In my case no one was supportive of my decision and there must have been a higher power looking after me because I finally decided that I was more afraid of long term side effects from prednisone and the other 20 pills per day than I was of surgery. For me surgery has been the best choice and I wished I had done it sooner.

Sue

Hi Sue,

I'm glad you stay on the UC forum to help ease people's fears about surgery. I really appreciate it.
Posted Today 4:13 AM (GMT 0)
Meesh, you're right, medication including remicade is a "tool" and I appologize if I've offended you or anyone with my comment. It was not intended. My comments come from a very fundamental mistrust of GIs and the way medicine works in the case of UC and other diseases. Have you been following the news about the new potential cure for MS? It's outrageous. Both the MS societies in the US and Canada (where we are) initially advised MS patients not to try to be tested for the anomoly that the treatment in question could resolve. There was a massive outcry from MS patients and now, at least in Canada, and now here at least the MS society is open to funding research on this treatment. The drugs used to treat MS are pretty much the same as those for IBD if I'm correct. I've consulted several highly regarded GIs regarding my daughter, including one in Rome (considered the best there), one in LA and the ones here who treat my daughter. They all have the same tunnel vision - one drug, then the next, then the next, then the next, then disembowelment. Of course, ask them about probiotics, diet, herbal treatments and they tune out. All of them have done this. I just don't treat these people with my daughter's life and that is a fundamental problem. Also, you might find these links interesting though you may already have come across this information about remicade (I didn't know that the lymphoma caused by it was reversable, I do know that risks are higher in children and that several have died. I also know that remicade was banned by health canada a few years ago for pediatric use in treating crohns but because of their pr/lobbyists it's now being used again).
http://www.scdrecipe.com/blog/archive/2008/05/22/remicade-study-more-tumors-than-expected/
http://www.scdrecipe.com/blog/archive/2007/06/19/picking-on-remicade-canadian-marketing/
If it were me with this disease I might be inclined to try it but I can't really do that in my daughter's case, or at least I don't think I can at this point in time. I wish you a speedy recovery next month!
Summerstorm, thank you for sharing your experience and I agree with you. The possibility of my beatiful child growing up with a bag is not ideal, but it could be so much worse and it would be up to me to instill in her a strong sense of self worth and confidence, which I strive to do anyway. Suebear, I would also like to thank you for posting here. Your comments and experiences give me hope and that is no small thing. Burli, I've been told by my daughter's GI that Remi is a "bridge to surgery", it's not intended or effective for long term use and once you stop you'll likely not be able to use it again due to the development of antibodies. So using it to kick into remission wouldn't work.
Thanks all for your comments.
Posted Today 4:43 AM (GMT 0)
I do just want to point out that a medical doctor honestly shouldn't have much to say about things like diet, herbals, and probiotics (although more seem to be promoting probiotic use) simply because it's not what they are educated in. It would kind of be like me, who has a PhD in plant breeding and genetics/horticulture, suddenly deciding that I wanted to be a marine biologist and expecting to be hired in that field at the PhD level. ;) My doc has said, in regards to probiotics, that it's probably a good idea to take one, but he doesn't know what to recommend, simply because there haven't been enough controlled studies done. As for diet, he said that I'll have to figure out what bothers me, which again, is true. You can see that by posting here about diet! I personally have found great success wtih the oral and rectal 5ASA drugs, and will keep taking them, as I honestly believe they work for a whole lot of UC patients. Plus, they are shown to reduce incidence of colon cancer, and as we have an increased risk for that.

I can't imagine what you're going through as a parent of a child with a disease like UC. It hurts to realize that UC afflicts children. It's just not fair. I hope that whatever treatment route you choose, she stays in remission for long periods of time.
Posted Today 4:58 AM (GMT 0)
Remicade "kicked" me into remission so it worked for me. I was was in remission for quite a while after I stopped but I didn't remain on the VSL#3 and other things I mentioned to see if I could used that to keep from getting ill again. I was just taking Colazal after I stopped Remicade.
Posted Today 5:04 AM (GMT 0)
Killcollits-you can always have your daughter set up for a jpouch, go ahead and do the first step and then just leave the second step until she is older to decide.
That is what i had decided to do. i am the kind of person who doesnt see the glass empty or full i just see that i am fixing to knock it over, so i plan for all the bad stuff in the world, lol.
anyway, i had heard of remi as a bridge to surgery too,and alot of people do that,because it is better to have it healthy, or to have it when you are younger, because you will heal better.

If you decide to go that route or want more input, look for shaz like i suggested earlier, she can tell you alot more about being a child with a bag and her experince.  she hangs out on the ostomy board, and im sure she wouldnt mind talkign to you, im volunteering her anyway,lol.

Posted Today 5:38 AM (GMT 0)
Fruitgirl, I've had friends and family in the medical field make the same comments about doctors and the type of information they can/should give out. My husband is a philosopher of science and does some work on medical ethics. We've discussed this at length and we both feel that at best, when a patient (or their guardian) asks about a particular treatment ie. diet, and you as a doctor are aware of a diet that has helped some of your patients (ie. scd, I have managed to track down and speak to several FORMER patients of my daughter's GI who have been successful with this diet and the GI is aware of this) and you choose not to say at the very least that you are aware of a diet that has worked for some of your patients but that you can't endorse it because there have been no trials on it, then you are acting in a manner that is negligent and arguably unethical. Also, in regards to probiotics, these same GIs use VSL 3 to treat pouchitis and it's been indicated to bring UC into remission in some cases, why not bring that to your patient's attention and leave it up to them to try it. My husband and I are lucky in the sense that we have the skills, access, time and financial resources (though it is a big stretch at the moment) to try various things, but we asked for information and it was withheld. Many excellent pediatric GIs (ie. those at NYU I've heard) recommend scd as as a starting point option (with meds of course) to their patients.. It's then up to the patients and their families to decide if they are willing and able to try it and see if it works for them. We were also told by our GI that remicade has a success rate only equal to or slightly higher than placebo. Again, information we requested. If we hadn't they'd have been happy to have pumped it into her with our (uninformed in so many ways at the time) "consent".
Regardless, my daughter is now doing well and though I am very distraught we are okay for now (knock knock of course). Summerstorm, thank you for your sugguestions, I've been reading Shaz's website and will contact her if the situation ever arises.
Burli, does that mean you will most likely not be able to use remicade again? I'm not sure, that's just what I was told and have read. Also, you mentioned that you always hope your current flare will be your last ever - is that actually possible? I'd love to know, I need some hope here!
Posted Today 9:02 AM (GMT 0)

killcolitis:

I may have the Remicade antibodies...I stopped using Remicade when, in my second series, an in-house nurse administered the infusion too rapidly causing me to develop a reaction. I didn't question the incident or discuss it with the GI. He just started Imuran.

If I go into remission I'm sure I will have another flare. My expectation though, is to control that next flare and wait it out in a tolerable state. You know there's logic to suggest that a flare would go away on it's own as your immune system backs off if only you could go long enough.

So I go into remission, I'm thinking, and at first sign of a flare (for me they always follow some wicked virus or big illness) I increase my anti-inflammatory meds, add some Rowasa and go back to a larger amount of VSL#3 (my Internist brother-in-law reads his medical journals and knows about whipworms and vsl#3 studies and believes these work by providing the colon something that the immune system can go after; his wife, my sister, also has UC and says her UC improves with VSL#3). If necessary I will go with a steroid enema and, last resort, prednisone. I knew this flare was coming after I had a bout of some stomach bug that gave me diarrhea. I called my GI's office when mucus came weeks later and they convinced me to wait saying that mucus could come from other problems...I should have insisted on more meds then because a few weeks later there was blood and it was too far along for more benign treatment. Now I did lower my Imuran from 100 to 50mg in May of this year so that lowered my resistance to a flare once the immune system was triggered (my theory). It could be I just slowly declined since May.

BTW: I don't buy into the SCD theory of feeding bad bacteria in the colon by eating the wrong foods. I do think some people cannot tolerate certain foods due to allergies but that's not UC related. I tried SCD by the book and lost a lot of weight causing me to become deathly ill. I now eat so many of the "wrong" SCD foods and my flares are easier because I am stronger through them. I would not want a GI to even mention this diet...My family did like the yogurt I made though. I've heard folks say SCD helped them and notice they are taking very powerful drugs at the same time...how can they determine if it's the drugs or even their immune system kicking off on it's own? I would want my daughter to have calories. In the hospital, when I was really bad, I ate a liquid diet full of artificial flavors and simple sugars and got better just because my colon ws allowed to rest because the diet was liquid. The book makes you believe this science is the answer; that's what hooked me. I suppose you just have to see for yourself and hopefully you'll have different results.

You are a great parent to become so involved with your daughter's UC...I wish you the very best. It seems you're uncovering every stone.

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