Recently diagnosed, still learning

[H8myguts]

My story begins in June of 2012. I was visiting my sister and felt pain everytime I would eat or drink. It was similar to labor. It would come on suddenly and go away just as quick. But it was constant for the whole week I was out of state. At first I thought it was something I had ate (my sister lives 10 hrs away so I snacked in the car on the way up) then the last day I was there I had a fever. So I planned to call my doctor when I got home. But when I got home I felt a lot better. And I am not a fan of the doctor so I did nothing. A month later I was running errands and I almost had to pull over because the pain was so intense. So I called my doctor and they were concerned it was my appendix. So I had to go to the ER. Really not a fan of that. They did a CT and brought in a specialist told me it was NOT my appendix and there was inflammation in my terminal ileum and before I knew it they were addmitting me. I was shocked! What was going on?

The next morning I had a colonoscopy and it was thought to be Crohns. Sure enough the biopsy came back and it was. Immediately he put me on Humira. I had always had loose stool. I thought it was just who I was lol... so after a month or more on the Humira I was thrilled to be having solid poops! I almost felt normal! And then... The pain. I now have the pain that sent me to the ER in the first place at least once a week. It is exhausting. It is annoying. I can't eat things I used to be able to. Even though I have technically had this disease for quite some time.... food hasnt made this miserable since the Humira. Or maybe it was building up to this anyways. I had a follow up with the GI and he is pushing for surgery. He sent me for an upper follow through. And it showed a larger area of narrowing. But I have my reservations. I am young. I have a 2yr old. My husband is military so I am not close to home, family, or anyone who could help with my recovery and my child during that time. I am also wanting to expand my family. We were actually trying before all this diagnosis went down. My GI has refered me to a consult with the surgeon. I just havent made the appointment yet. Because of my fears. Because whenever I am ready to call and set that up I feel fine and think I will be ok for another year.... then I feel terrible again and afraid. My GI says that surgery will dramatically decrease my firtility. But my research is mixed on that... My GI is a rollercoaster but I will save that for another post.
I am on here looking for information, advice, encouragement, and a place to vent.

 

[LisaL]

Hi H8myguts. Welcome to the forum. I am sorry that you are feeling so poorly right now. I know that you are frightened of having surgery, and certainly it is not the right answer for everyone, BUT if it is the right decision for you you should know that recovery is not always so hard.

Is it possible that your increased pain could be a result of the Humira? How long have you been on the Humira? If you are having pain while on it, might you just not be responding well to it? You could try Remicade in that case. Also, are you doctors thinking that the narrowing is due to scar tissue. If that is the case, surgery may be the best option as scar tissue is unaffected by medication. But, if the narrowing is due to inflammation, surgery is not indicated. That is where medicine can have some effect.

As far as your fertility goes...You are still young, so that is in your favor. And, untreated disease, one that causes you to eat poorly and feel stressed out will not help your fertility. Finding the best treatment will decrease your stress and pain, which in turn can only have good effects on your fertility. And, for what it is worth, I have Crohns Disease and I have had three children. I took 6MP for two years, went off of it and had my first child 14 years ago. From that point on I took no medication-I had flare ups 5-6 times a year, lasting about 24-72 hours, that I would just suffer through. During that time i had two more children, 11 years ago and 4 years ago. The better you feel, the better for your fertility.

I hope you find relief very soon.
-Lisa

 

[Angrybird]

Hello and welcome to the forum

I was also wondering if the doc has confirmed if the narrowing is down to scar tissue or inflammation. If it's inflammation then as mentioned above there are certainly other meds that can be tried before going the surgery route. If it scarring then surgery is the only thing that can sort this, I had to have a stricture removed last year and it went really well and now as you can see from my sig I am 26 weeks pregnant (we were only trying for 2 months as well) so I am not sure why the doc thinks you would have problems - did he given any type of explanation to this statement? My understanding is that you are always best to try for a family when the tum is settled to avoid issues during the pregnancy and if your body is run down and under stress from an active flare then you may be less likely to concieve.

Please keep us updated on how you get on.

AB
xx

 

[H8myguts]

Thank you for your replys and support. Yes the stricture is due to scar tissue. And when it comes to the fertility and surgery issue... I am not sure why my doctor is so sure it would lower my fertility by so much. From what I have read that is only true when you have to have a stoma. And I have read that fertility decreases a little with any surgery of the abdomen. I have had bladder surgery when I was only 6. I was able to get pregnant with my daughter the very first month that we decided to start trying! I dont know... I guess I really just need to meet with the surgeon and figure out what to do from there.

 

[David]

Hi there and welcome. I'm so sorry to hear what you're going through, that's so rough My heart goes out to you.

Frankly, since the narrowing is due to scar tissue, you have two options I see:

1. Exclusive enteral nutrition or TPN. This may or may not be a viable possibility for you and you'd need to discuss it with your GI. This is a liquid diet. It would likely be one of the hardest things you ever do as everyone else eats delicious food around you. YOU CANNOT CHEAT. Not only should it help bypass the narrowing, but it can put you in remission as well. This might buy you the time necessary to have another child and be in a better place for surgery.

2. Surgery. As mentioned above, the scar tissue isn't going away and if you don't deal with this now and keep eating normally, you're going to get an obstruction, fistula, or worse. Stricturing of the intestines is very serious and you cannot just put it off.

I know you're scared, I would be too. But you really need to deal with this properly.

We're here for you.

*hugs*