GI appointment update

I just had my first appointment, gonna have to turn in a poop sample, they want to see my CRP… my colonoscopy is scheduled April 19, follow up is in June… the doctor was young, he seemed to be a fan of imuran but open to mesalamine and supps…
I cried after the appointment. I was there alone, and it just brought out bad memories and trauma from when I was kid. Doctor didn’t really sound encouraging. Sigh. And we plant to move before the follow up is even scheduled… I’m feeling like a lot of old bad feelings are coming out.

I’m so sorry you’ve had such a bummer of a day. I relate to the medical trauma: sometimes appointments just bring up layers of memory.

Your husband needs to deal with his issues. His comments were neither compassionate nor fair to you.

At the low points it can feel so hopeless, but the good news is that there are plenty of meds to try. I’ve learned a lot on this forum about how to advocate for myself and how many different paths there are to remission. For all the troubles and questions we bring here, the forum is also full of so much wisdom and good news: people so often find treatments that work. And researchers keep coming up with new treatments, too. I hope you can hold onto this hope today (I know I’ve needed the reminders myself).

Thank you, GrittyHope. I’m feeling better, and I’m going to enjoy a nice long walk in the sun with my kiddo.

Something that “triggers” me is that he thinks if I eat better the disease will just disappear. I tortured myself with food diaries with no improvements, and I’m now just eating whatever I want… and he will tell me it’s my fault I have UC, I deserve it, I’m not doing anything to help myself… because I wanted to eat a cookie. Is that fair?

FF, being told my bowel disease is my fault also triggers me big time, or used to until i talked about it at length with a therapist. A few - very few - people can control their symptoms with diet. The majority have a more serious disease that requires medication under supervision of a gastroenterologist. Other people like to blame us for our illness mostly because it is a scary thought for them that our bodies behave in ways which we cannot control. If you're under medical care and following what the dr prescribes, and letting them know if a treatment doesn't work for you, then you're doing really well and your husband can shut up.

FF,

Welcome to the forum. Although I wish you didn't have to find it.... It's a great place for support and information.

Food does not cause UC or Crohn's. Your husband needs to have a conversation with your doctor so your doctor can explain what causes this disease and it's treatments. Next time try to get him to go into the appointment with you if possible. If not--there are books available about this disease----or there are studies from Mayo Clinic online--that give the same information. Highlight the items you think he needs to know and place it out where he can see it. (Although some spouses are not open to discourse and a realignment of their thinking.) Medical diagnosis causes fear in our spouses and they can "act out" and "strike out" in an unacceptable fashion because of their fear and their inability to battle it for/with you.

My husband wondered about what caused my disease too.... Then he thought food made my UC/Crohn's better or worse. I painstakingly kept a food journal and discovered He was sorta right and I was sorta wrong. There are some things that cause me to have a difficult time. At the beginning there were a lot of them--but with medication and working with my GI they are fewer. He'd notice that my disease was worse if I ate sweets, canned tomatoes, and that the only thing I could keep down when it was really bad was SCD bone broth, SCD yogurt, homemade beef jerky and cheetos. So sometimes when he was waving his arms and trying to get my attention....he had noticed something I hadnt.

Crying after having a diagnosis of UC or Crohn's is normal. I think that everyone I have ever met that was diagnosed with UC or Crohn's has cried about their diagnosis at one time or another.

Your life is going to change... If you face your challenges head on and seek treatment you will be better off. You get to decide how you handle this disease. I'm a type A personality....organized and alittle OCD. I made spread sheets, read books and researched, tried new supplements, kept a food journal and kept copious notes. This was a calming pattern of behavior for me.....and the information I gathered helped me. What's important for you to know is that everyone is different, not everything works for everyone the same way, and you will discover so much about yourself during this journey. You are stronger than you know. One if my friends is so laid back about her disease it stresses me out.... But that's the way she has to deal with it.

Finally, if I were your parent I'd want to know. I'd be there to help my child while they were moving....going thru the tests... And I'd be there on the phone if they ever needed just to talk to me about things without my actually being there... If that's what they needed. I realize that may not be the relationship you have with your parents or siblings....

Perhaps you have friends you could reach out to? I have an "adopted" daughter that I just adore. She's so very special to me and if she needed me..... I'd be there for her too. Make no mistake...shes one of my kids.... I talk to her daily, debate with her frequently and ring a peal over her head when she does something that causes me concern....and I tell her everyday how much I appreciate and love her. She makes my heart happy just by being her--even when she doesn't listen to me .. So your support system does not have to always be a "blood relative."

Hang in there. The group here--they are exceptional IBD warriors with a vast amount of shared knowledge--they help others so much and there's a diverse group of experiences to draw from.

Please check in and let us know how it goes.

Clo

It is not your fault and you are not alone. I feel like we need a banner at the top of the forum.

I have definitely felt a lot of guilt over not diligently following a super restrictive diet and that maybe if I made enough diet modifications I wouldn't need the next step therapy. (I give up coffee and alcohol and raw veggies and whole wheat, tried FODMAP and probiotics), but now I'm on meds that work and sometimes drink coffee while driving to work.

Similarly, I have delayed seeing my GI (who I really like), because I think my symptoms aren't "that bad". This sometimes frustrates my boyfriend, though he never gets mad or blames me. He just wants me to feel better and sometimes it's more obvious to healthy people that the symptoms we're experiencing aren't normal. I think I sort of get used to living with it so it doesn't seem that bad or I feel like I'm as good as I'm gonna be. But its not true!

Please do not lose hope. Having a chronic disease can be frustrating but there are a lot of new treatment options and a long remission is possible. But if you feel like crying, go for it! Your feelings are your feelings. I sometimes cry about it when I'm feeling down, even though I'm able to live my life the way I want to.