Need advice to help alleviate urgency/sleeping through the night.

Hello all!
I'm new to this forum and am really excited to be able to talk to people who have relatable issues - as much as my family and friends are supportive of the disease they don't know just how awful the symptoms are that I am experiencing.

Currently I am only on Humira 40mg/week and have been since 2008. I was diagnosed in 2007 with no response to Remicade and an allergy to Imuran. Methotrexate was added a couple of years ago but being a 24 year old woman, I don't want to take it and possibly sabotage my chances of conceiving in the next 5-10 years. I also refuse to take prednisone, other steroids are okay, but prednisone is just too awful.

After a recent visit with my G.I we discussed possibly doubling my Humira intake/week, but also dove into the topic that the Humira may not even be working for me as my symptoms have never full been alleviated. The only surgery option for me is to have a colectomy - which I'm not 100% comfortable with. Being the age that I am, and having CD colitis I already am self-conscious and find it difficult to date, so the thought of having a bag of poop attached to my stomach is not the most intriguing to me. Obviously if it's the only option I will have to accept it, but as of now I'm searching for some other advice before diving into surgery options.

My main issues that I'm having right now are urgency and having to wake up 2-4 times/night to use the bathroom (which is also urgent, sometimes I don't make it). Throughout the day I have to go frequently and I have serious bloating and cramps. I also find that heat really effects my symptoms and causes the urgency and pain to become 10x worse.

As for eating, I attempt to keep it really plain and simple because I feel that even a glass of juice or a cup of tea ignites my pain, so I don't eat much. My family and friends are concerned with my current weight being too low.

Does anyone have any suggestions as to how to control some of my symptoms (over the counter drugs/vitamins?) - anyone else experiencing similarities? Although I experience all of these symptoms and each day is a struggle, I still am a full-time college student as well as working part-time at Starbucks (ya, I'm on my feet for 8 hours at a time when there... ).

Any advice/support would be greatly appreciated

Jasmin

Hi Jasmin,

Sorry you're going through such a hard time. I'd have to say, I totally agree with kazbern about checking out the Specific Carbohydrate Diet. It's pretty strict, but when I went on it full force my cramping, bloating, diarrhea , and gas all stopped within one week. I figure there's no harm in trying it and you may find that it really helps. It says not to eat carbs, but I have always found that I could eat rice. Plain, white rice. Maybe your body can tolerate that and it can be filling so you don't lose too much weight. Eliminate refined sugars - no soda, cookies, syrup, candy bars, juice, etc.

As for the night time urgency, bentyl can help, but I never liked the way it made me feel. I felt so confused like my head was in a fog, so... You could also try Imodium. My GI said to take two about a half hour before bed and see if that helps. You can buy it OTC and if it doesn't work, then maybe your GI will prescribe the bentyl.

Humira never did anything for me. Could you try Cimzia? Has your GI considered pairing your biologic with 6MP or Imuran? Sometimes combo therapy helps when a biologic alone can't get the job done.

I wouldn't consider surgery at all until you have run out of options. I think the right meds and some dietary changes are a good place to start. The SCD is what helped me to avoid surgery so I'm a big proponent of it. If you want to take a multivitamin that will absorb well check out Freeda Vitamins online. They don't have any fillers or junk in them and they are kosher and made for people on SCD.

I was in your shoes. I feel for you, I really do. Hang in there and keep us posted.

Stef

Hello

I'm also sorry you are going through this. Like the others above I believe the surgery should be your last option. I don't have CD but I've watched my son suffer for 11 years. He is now 21 years old.
I know you are against Methotrexate and I know it causes birth defects; however, I just want to let you know my son had some success with Humira combined with Methotrexate injections. It was only second to Remicade. If you're not planing children soon that may be a consideration.

Are you becoming malnourished? Is your disease confined to your colon. If you have a lot of diarrhea and can't gain weight you may have some small bowel involvement. There are just so many variables its hard to say or Mae recommendations.

There are other things you can try such as the elemental diet, which is liquid nourishment. This helps give your body the nutrients it needs and rest your GI tract. Nicecupoftea tried it. She said she only made it 2 weeks. My son only made it 1.5 days. We were all very surprised though on how much better he felt in such a short time. My son has severe disease. He had surgery feb this year.
He was suppose to have an ileostomy but the surgeon was able to save 40% of his colon. He had a very hard to find fistula that did not show up on any tests. The bad news is the surgery did not work he only had a couple Weeks symptom free before it all started up again. At this point we don't know where his disease is active. It could be the colon that is left. It could be another fistula. It could be small bowel involvement that we are nt aware of. Monday he goes in the hospital to get the TPN started. He will be off food completely.

Did you get any second or third opinions? Good luck ad please keep us posted.




P