Hi Everyone, earlier this week I received an email that I felt could benefit others who follow this website, so with permission of the writer, she has allowed me to publish it here which will allow all the other colitis people to benefit from the answers and discussion that follows. Here is the personal email:
My husband was diagnosed with UC just a bit over 5 years ago and had just gone thru his largest flare up in this time. This brought him to Predinzone (again) and 6-MP. His GI is going to see how this fares out over the next couple months and then is recommending he takes Remicade. As I was doing research on this drug, I am getting more and more emotional and scared for him. It’s amazing how much you rely on your partner when you get married, and when it comes to his health, I need to be his rock. But I think I have now reached the point where I’m just as, or more, scared as he is. Both he and I tend to think the worst and then celebrate when it’s not…so of course we think surgery or drastic side effects of drugs (TB, cancer, death, to name a few).
This leads me to you. I believe that I was supposed to find your site and spend hours reading and seeing how you interact with the guests to your page. That being said, I’m going to get all the information for the SCD diet, but was also hoping that maybe you would have a minute or two to provide advice on how I can help keep it together for my husband…and myself. Since you are the one with UC, what do you want/don’t want to hear…how can I be more supportive? The thing that makes this more difficult is we are trying to have a family and because I’ve got issues in that department, it’s very trying. I’m so scared that with all the drugs he’s taking/will take will affect his life…whether it be with his sperm count or something worse. When/if we are blessed to have a child, I want – Need – him to be around for a long time. In addition, I’m so scared that this terrible, under rated disease is going to make my child’s life miserable as the chance for an IBD goes up.
In closing, thank you in advance for reading my crazed note and for any advice/help/suggestions you might be able to provide. Congratulations on “overcoming” your UC….I hope my husband can be just as lucky.***
***-Submitted by a a woman who wants to remain anonymous per her instructions in her email to me when I asked if it would be alright to share this email on the website for others to benefit from.
So here is what I would like to say to the woman who wrote the email above:
Thank you so much for writing in your message. I am so happy to see someone like you who cares so much about your husband’s health and is searching out all sorts of information to make the best informed decisions possilble.
There are all sorts of parts of living with colitis that you bring up which I remember going through before I started feeling better. One thing for sure that I can remember was investigating the side effects of medications as much as possible. What I am starting to realize is that on the Internet, there are usually tons of horror stories about medication side effects. And this I’ve noticed for quite some time. There are also stories about medications or treatments that are working, but they seem to be less in volume compared to nasty side effect stories.(I myself have posted several medication side effects stories on this site based off my personal experiences, and I know there are many others here as well from other UC’ers who write on the site, so I’m guilty of that for sure.) BUT, don’t feel like you are the only scared person out there. Most people who are taking medications for the first time, or even after a long time have some level of scaredness as well. That’s totally normal, and the good news is that some medications do work for some people. But again, you are not alone in being scared of medication side effects, there’s a whole group of us in that same boat. I myself am medication free(thanks to my diet) but I’m still a tiny bit scared of what the previous medications might be doing/already done to my body. I think that is normal too. We as an ulcerative colitis community are part of a big group, and since we are dealing with a similar situation, with similar tough choices, that has always helped me deal with the “scared” feelings that come up from time to time. I hope you can find some of those feelings from our website here.
As for moving forward, I’m so happy that you are going to try the SCD diet. It has been the best treatment for me and I know others from this site feel the same. If you do the diet along with your husband, that will be really beneficial for both of you in my opinion. What to say, what not to say… Now that’s a bit harder to answer. Since I was the one with ulcerative colitis and all the symptoms, bleeding, cramping, uncertainty for so long, I think what my wife did all along was perfect. She wasn’t always telling me how sorry she was for my pains/UC. She wasn’t always sitting there trying to help me out with every little thing. But rather, she was educating herself just as much as me, if not more on the medications when I was trying medications, she was coming with me to the gastro doctor appointments and asking questions directly to the doctor, she was also and maybe this was the most important thing of all – treating me like a normal person. After all, I was still her husband, I still needed to do dishes when I felt able(and she figured out when those times were present don’t get me wrong…) I feel she tried to not make this disease such a big deal(I don’t know how she pulled that off) but looking at it now in hindsight, I think she was trying to get my brain past the thinking of I’m damaged and doomed for life, and more into the thinking of lets find some ways to move forward positively. She as usually backing me up with all of my decision making in terms of medications. When I refused to try another medication after too many previous side effects from the others, she backed me up 100% without any questions. When I eventually decided to try the SCD diet because otherwise I was being told to try 6-MP and I didn’t want to try that, she backed me up. And, when I eventually “fired” my previous GI doctor because we didn’t see eye to eye anymore, she baked me up 100% there as well. That was super helpful knowing that my best friend/wife was there not only physically, but in the decision making process that goes along with treating ulcerative colitis for everyone of us and our families where UC exists. I can’t thank her enough for supporting my decisions along the way. When the day comes that your husband’s UC is in remission, I am sure he will say how thankful he was that you supported his decision making in terms of treatments/decisions/doctors/tests.
I am sorry to say that I don’t have any personal first hand experiences with having children.(Hopefully some others will write in here with ideas on the sperm count questions, and other related topics) There are tons of people here on this website who have colitis who do have kids, who are happy and healthy, and I believe you are correct according to research the chances of IBD are higher for children who have family members with IBD. That certainly was the case for me as it runs all through my father’s side of the family.
But, as I try to make clear, UC is NOT the end of the world.
Yes, I have ulcerative colitis. Yes, its been tough. Yes, I wish I didn’t have it. But I do. And my life is great in my opinion. And one other things for sure, now having UC and getting into remission, my list of things on this planet that I once thought impossible is MUCH smaller. I can’t wait for my wife to graduate Berkeley so the real adventures can begin. More on that later…
Thanks again for your story. I hope some of my rambles here will help you out. Best of luck to you all with UC, and I’ll post the stories that are waiting in my inbox that you all submit really soon. I’m in the middle of a move to a new apartment rental right now, and a bit behind on all sorts of stuff.