Forums:
Just want to say hello to everyone on this blog. I just started treatment with Boaz 1 month ago in December and am so incredibly thankful for getting help. I started having IC symptoms back in October but have been sick from a re-occurrent C-Diff infection since August. It is an antibiotic resistent infection that attacks your colon. I was treated with many antibiotics to kill the infection and that possibly triggered my IC. I am an RN and picked up the infection at work in the NICU that I work in. It has been extremely scary as you all know but I'm thankful to have a community of people who seem to understand the nightmare. It is very encouraging to hear of others success on this blog. It has given me hope and I am thankful for that.
I do have a question for all of you ladies who had to plan a wedding through suffereing with IC. I recently got engaged to my boyfriend of 8 years. Tough news is we had the date set and paid before all of the IC happened. It is supposed to be 9 months from now. I'm scared its not a good idea when trying to heal from IC. I know stress plays a role in this illness and I do not want to suffer and be in pain on my wedding day. We are thinking of canceling it until I am in better health and can enjoy the day but I'm wondering if anyone has any good advice regarding planning a wedding and having IC. Is it worth it to wait until I'm able to control pain better and give my body a break from stress? I need some advice because no one understands the pain unless you are a sufferer. Thank you for any advice or suggestions. I'm really sad to even think about canceling my wedding but want to recover from this illness so badly and will do what ever it takes.
Thank you!
Jessica
Hi Jessica!
Hi Jessica!
Wow, we are like two peas in a pod! I also started working with Boaz a month ago and have just started planning my wedding! However, I have had IC for about a year and a half now.
I actually only got engaged two weeks ago. I am over the moon with joy but also share your fears about the stress is planning a wedding while unwell, so I know exactly how you are feeling. I know my pain definitely spikes when I'm stressed and I'll also be finishing of my post-graduate degree over the next year so I know I need to be careful. It's so scary not knowing what the future holds, but I've decided that the truth is I don't know how long it will be until I'm feeling well again and my fiancé has been such a solid, loving support to me throughout the whole ordeal- I know in my heart that it will all work out on the day and trust that the joy and excitement of marrying the love of my life will see me through the day with minimal symptoms.
I'm sorry I can't offer much advice but I hope that I can offer some support. Please feel free to send me a private message if you need :)
Emma.
Hi Jessica
Hi Jessica
So very glad you found this holist route to healing. There are two Facebook groups that are on going where you can get some quick responses in addition to this group. I will include one link here and then you may have to friend me to get invited into the group. This website is of course another good way to get information and is the ICAMA official site.
I don't know how to answer but I kind of agree with Emma that in some ways we need to push on and try to get on with life a bit, but it really depends on how functional you are. When I started treatment I had only had IC for 6 weeks but it was a rough six weeks. However after I started treatment I was able to sleep through the night which made a big difference. I would hope that after 9 months your inflammation will be reduced significantly and your gut infection will be mostly cleared so that you are not as symptomatic which would be wonderful. Sometimes it can be a bit rocky the first year but hopefully you will be feeling better and better and having days where you are much more comfortable. Maybe discuss with Boaz to see what he suggests? Here is the link. PM me if it doesn't work.
https://www.facebook.com/groups/545976462108898/
If we don't excel at health, the only other option is disease.
Mimij67,
Mimij67,
Thanks for your response. I agree that we need to push forward and try to live but I'm still struggling to make it through one day at a time. It is really scary to think about a wedding that I have to be at the whole day at this point. I think your right to talk to Boaz about what he thinks. Thanks for the link for the FB group.
Another thought I had is that
Another thought I had is that if you want to be married, just have a simple cerimony and then have the party when you are feeling better!
If we don't excel at health, the only other option is disease.
I guess this facebook site
I guess this facebook site explains why this site now offers very little warmth and support....kind of sad.
The only issue with this is
The only issue with this is that is public. Maybe some poeple feel more comfortable with private sharing. And certainly everyone is invited. I don't do anything on Facebook except that group. I am not a big fan of facebook.
If everyone was welcome - it
If everyone was welcome - it wouldn't be private. I haven't a clue as to how to find the site - as I know next to nothing about facebook.
I know, right now I sound like a hurt little three year old that wasn't invited to the party. Or, maybe a high school girt, or, maybe an adult who feels a bit left out in the cold....probably just one moret thing to work out in that never ending therapy....
Oh Denise- I just picked it up that there was a group from here and then pm'd someone about it! Voila- I am on it now.
I am not into Facebook so I just joined it for these 2 groups so I wouldn't be left out either. If you want to join it- pm Mimi like she offered and join! I would defintely say to pm me but I am facebook challenged. it took me a while to decide to join but I am glad I did.
If I can figure out how to join (the person who barely uses a cell phone)You can too!!
I agree with you though that it would be a real shame to let this site go because people who are new need a place for info and support so those of us still on here can make an effort to post more- including you, right?
Oh- by private I mean- it is limited to the people who join it so nobody can just log on to the internet and read it. So maybe some people feel more comfortable sharing personal things.
Sorry Denise, like Deir wrote
Sorry Denise, like Deir wrote it is just more private for us at times for certain questions! We would love for you to join. We just need to be friends on Facebook and we can add you to our private group. It was posted on here a while back and new members are joining all the time! I still check this site on a fairly regular basis and share my love and support where I feel I can. Big hug! We don't want anyone to feel left out. Lots of love!
Hey Denise,
Hey Denise,
You know you're my personal hero lately, helping to answer all my uti questions, and I would LOVE if you'd be part of the facebook conversation! The reason I like using the Facebook group is that it is easier to post in real-time. Posts on here tend to not show up right after you post them and at times it's really nice to be able to "chat" with people in a more instantaneous way. That said, I LOVE this chat forum and do regret that many of the fabulous conversations that happen amongst the Brizmans patients are not getting logged on here. It is invaluable to be able to search through old threads on here to learn from others' experiences.
xx
Yes, it probably does depend
Yes, it probably does depend somewhat on how functional you are too! I am pretty functional at the moment- my main issue at the moment is freqency and constant pressure, with pain usually being only every few days for me now, and on a pretty low scale.
I'm not sure how functional you currently are so that will obviously play a big role.
I just feel like I have already put my life on hold so much because of IC and I just don't want to do that anymore.
I am sure you will make the right decision either way, at the end of the day, you are still with your partner whether you have that marriage certificate or not and if you feel like you would be more comfortable waiting until you are more functional then that makes perfect sense too!
Hello Jessica and welcome!
Hello Jessica and welcome! Don't have much to add, but I agree you need to listen to your body and what feels right for the two of you! It may be nice to have something to look forward to, but at the same time the deadline could added pressure on yourself that you are hoping to be feeling back to yourself by then. This can be a challenging journey. Some respond very quickly while others move at a snails pace. I would definitely discuss your concerns with Dr. Boaz and sit down with your fiance and decide what feels right. Congrats on all fronts and best of luck to you in your healing journey!
Hi jessica- welcome and Ihope
Hi jessica- welcome and Ihope youa re feeling better soon! This is such a difficlut decision! I find that stress- whether good or bad really messes me up however, having goals and fun events also contributes to my overall sense of well being so in the long run, I think helps with my recovery.
I guess it would depend how how stressful you think this wedding will be-family, finances etc.
It is really hard for anyone to say how you will be feeling in 9 months but I hope it is a little bit better.
I would remind myself that
I would remind myself that wether you wait to have "the big day" OR do it when you had planned, IC or not, that it is just a day. Don't set yourself up to putting SO MUCH effort, emotions, money, energy into a day of fun, and then when it is over, you have a lifetime of commitment. And that is what it is all about. Not that day. It would be wise to also put a lot of planning, talking through, how you both will just do life together(and not insinuating that you have not!) The whole meaning of the day is that you are saying to each other, that for better or for worse, your going to stick to eachothers sides. Right?
I'm not trying to sound preachy! I've had IC for over 12 years... and certainly had it on my wedding day. I just remember being so glad my wedding was over. I was much more excited to finally be with my husband, and ALONE!!! :)
Whatever you decide, I hope healing and joy for you. AND a wonderful wedding day.
Hopeful
What amazing people all of
What amazing people all of you are! :) I sincerely appreciate all of your advice. It may sound like I'm stresses over something that shouldn't be stressed about but it was a day I was really looking forward to. I'm new to IC and don't know what my future may entail. I think hearing perspectives from everyone really helps to remind us to continue to live our lives to the best we can. Thank you!
((((((JESSICA)))))))))))) big
((((((JESSICA)))))))))))) big hug!!!
Hi Jessica, difficult dilema
Hi Jessica, difficult dilema for sure. I notice that you got IC after C.diff., which is exactly what happened to me. I got the infection from taking clyndamycin for strep.b. in the hospital after giving birth. I am curious if you took Vanco, because I believe that was the antibiotic that tipped me over the edge. I hope you experience relief with this treatment sooner than later. I am past the nightmare phase of the IC/C.diff situation, you will get there too:)
Jessicamackenzie, yes we do
Jessicamackenzie, yes we do have similar stories! I actually work in the NICU with all the babies and that is where i picked up C-Diff. I had 3 recurrent infections at age 28 from August 2013-October when suddenly I developed my IC symptoms 4 days into Vancomycin treatment. I think the Vancomycin treatment also tipped me right over the edge as well. I could not get rid of it. It destroyed my colon and threw my body completely out of balance. That is horrible that you got C-Diff as well, especially when you just got a new baby!! Hospitals are dirty places. Congrats on your new baby! I was supposed to get a fecal transplant in a last resort to kill the CDiff and re-establish my good bacteria/normal gut flora but the infection cleared up suddenly. If it comes back that is my plan of action. My body had enough. What were your IC symptoms? How long did your IC symptoms last for while being treated by Dr.Brizman? Your healthy now?!!
I am 60-70% better, I'd say.
I am 60-70% better, I'd say. I work, my bladder has many good days, and I never have unbearable days. I am on list 3 and have been in treatment faithfully for about 7 months, however, I fist saw Matia in April of 2011 but dropped out a couple of months later because I was not convinced of the importance of following the diet, and was not noticing dramatic improvements. I came back to Matia after more research and after reading her dissertation, her methods make the most sense to me.
I too was looking into fecal transplant after a failed tappering regime of Vancomycin, but I live in Canada, my doctor looked at me like I had two heads when I asked for a referal to one of the few specialists here that perform transplants. I will never take Vanco again, as I am sure this was the main trigger for my IC. I would be interested to know where you would get a transplant should C.diff ever come back, if you would be willing to share.
My main symtoms are frequency and urgency. The frequency and burning urgency was constant initially, unable to sleep or do anything. But today it is always manageable with a little planning. I look forward to the day I can sleep through the night and consider pregnancy again:) I visit this site from time to time to remind myself that complete healing is possible, as doubt always creeps in.
Jessica and Jessica :)
Jessica and Jessica :)
There are many antibiotics that trigger IC. And usually one dose of ABX does not trigger IC. IT is lifetime exposure to ABX and other things right? I only write this because I would not want you to get the false impression that Vanco is the only ABX that puts you at risk for IC. If you take any broad spectrum ABX you are at serious risk forever now of disrupting gut flora and having SX return. We all need to be vigilant and have ABX always as a very last choice. Did the Brizmans say why you were vulnerable to C-diff in the first place? this is the question I have. Many people work in hospitals and not all get c-diff. So what were the conditions in you such that c-diff took hold? These are the kinds of questions that TCM practitioners ask.
I have seen IC symptoms return when people take antibiotic eye cream! It goes systemic when you put it in your eyes. This is just one example.
If we don't excel at health, the only other option is disease.
I agree that antibiotics all
I agree that all antibioticsplay a role in the development of IC. This is such a hot topic due to the development of Fecal Transplants instead of antibiotic use to treat certain conditions. It's great to see western medicine realize that not even the strongest antibiotic can kill a superinfection yet stool that is full of healthy good bacteria that protect us from so many things can save someone's life. Fecal transplants are going to be seen more and more throughout the world and who knows what else they are capable of healing.....UC, IBS, Crohnes, superinfections, and possibly help IC??? Maybe that's a long shot but I would be interested. 80% of our immune system is located in our GI tracts and when we get an infection that requires an antibiotic to heal accordingly to western medicine all of our healthy gut flora are destroyed that set us up for disaster. I'm not sure what the Brizman's viewpoint on Fecal Transplants are but it is a natural way of healing an infection besides herbs, and nutrition. C-Diff infections occurs so incredibly fast that if you don't do something about it quickly your colon can perforate and die from sepsis very quickly. No one knows the exact cause of IC because everyone is so different, but possibly this could be a potential treatment that is natural and effective along with diet and herbs. I wish I could do a research project on restoring GI flora with Fecal transplats and finding what conditons it may help along with a healthy diet. Probiotics work over a long period of time and possibly you may never have the same flora as you had prior to taking an antibiotic. A transplant takes 30 min and your normal GI flora is restored back to prior health and infections are gone 90% of the time just from the good bacteria. Just something to think about.
Jessica and Jessica :)
Jessica and Jessica :)
There are many antibiotics that trigger IC. And usually one dose of ABX does not trigger IC. IT is lifetime exposure to ABX and other things right? I only write this because I would not want you to get the false impression that Vanco is the only ABX that puts you at risk for IC. If you take any broad spectrum ABX you are at serious risk forever now of disrupting gut flora and having SX return. We all need to be vigilant and have ABX always as a very last choice. Did the Brizmans say why you were vulnerable to C-diff in the first place? this is the question I have. Many people work in hospitals and not all get c-diff. So what were the conditions in you such that c-diff took hold? These are the kinds of questions that TCM practitioners ask.
I have seen IC symptoms return when people take antibiotic eye cream! It goes systemic when you put it in your eyes. This is just one example.
If we don't excel at health, the only other option is disease.
Yes I agree all broadspectrum
Yes I agree all broadspectrum antibiotics are problematic and I will make efforts to avoid them all esp. the most powerful ones. In my case I am sure I came to cdiff with imbalances that TCM can address, but the biggest factor was the fact that I let it take over before seeking treatment, and it was able to do that because my flora had been wiped out with antibiotics in labour. For me how I came to IC is clearly linked to my treatment for cdiff, no small warning signs growing up just one gigantic messing up the balance in my body and a predisposition to autoimmune disease. \
I have never noticed anyone with a story so similar to mine, and I am curious to know how treatment goes for you Jessica. Maybe how you come to IC effects how you recover, so if you want to add me as a friend on facebook feel free I am on the fans page and my name is Jessica Mackenzie, this way we could pm in few months and see how it is going.
Jessica A
Jessica A
I have talked to M. Brizman about fecal transplants and IC. She has not seen it make a difference. The challenge here in my spotty-at-best lay terms, is that IC is primarily a disease of the small intestine. Fecal transplants are for the large intestine. The conditions which allow bacteria to migrate into the small intestine is part of the IC picture. Perhaps if the large intestine is in better shape it would reduce the likelihood of a re-infection of the small intestine. But it will not "cure" an infection in the small intestine.
There are many conversations on the internet about SIBO and fecal transplants and there is so far no anecdotal evidence that they help with SIBO which is what we have. I wish this were not true!
If we don't excel at health, the only other option is disease.