Feeling helpless

[Cindylouwho]

I'm a 45 year old mother of two lovely daughter, 15 and 9. My problems started shortly after the birth of our second child. I developed a carotid dissection (in my left carotid artery). My doctors prescribed Plavix and aspirin everyday until a stent was placed in my artery in June 2002. I continued taking the both medications until I started bleeding internally. That's where a gastroenterologist came in and diagnosed me with IBS in 2002. In 2005, blood started appearing in my stool. It progressed to Ulcerative Colitis three years later. My health deteriorated last year when I was bleeding out six times a day, and I ended up in the ER in November with flu like symptoms and anemia. After a brief stay in the heart hospital (my heart and blood pressure were out of whack), I was able to get through Christmas. However, I, again, ended up in the ER Dec. 30th. By that time, I couldn't even stand. It took every ounce of energy just to carry on a short conversation. I went from being a 5'7, 126 lb. women to a sickly-looking 104 lb. bag of bones. This time my bloodwork showed alarming anemic. I had two blood tranfusions, and my GI finally ordered Remicade treatments. I failed to mention that I had been on Asacol, Dycyclomine, Colazal, 6Mp, and Prednisone. I began the Remicade treatments in January and went into remission. I thought I was done with the nightmare. Unfortunately, I went into anaphylactic shock during my 6th treatment!

I visited my doctor last week, and he gave me some choices: start taking 6Mp and prednisone or wait to see what happens. I, feeling very confident, decided to wait it out. However, I was instructed to call the minute the I started bleeding out. Well....it all went down the pot, (no pun intended). The symptoms returned last week--not as bad as January's episode, though. Needless to say, my doctor has been notified. He wants me to take Dycyclomine four/day, Colazol 4 capsules. twice daily, and 6Mp every night before bed. He also recommended Humira.

I'm experiencing a bevy of emotions as this time--depression, anger, and anxiety!! Where do I go from here? What are my options, now? I don't want to take medicine for the rest of my life, and I certainly don't want to have surgery!! I'm trying to be positive. I mean...I don't have a terminal illness. But, I'm pretty scared, now. What upsets me even more is that I want to function like a normal mother, but I'm too tired to even play with my kids. To make matters worse, this weird backache returned. That's one symptom I had back in December. The pain is located between my shoulder blade and my spine. UGHHHH!!

Somebody, please respond, as I am losing it

 

[Trysha]

Hello Cindy,
You have my heartfelt sympathy for all the turmoil you have endured.It can be a very difficult decision regarding which pathway to go down at this point of your illness.
There are many people on this forum who have had to make similar decisions and whom will be along to help you sooner or later.
The forum covers a number of time zones for differing countries, so responses may be delayed but there will be people that you will find helpful.
I am classified as "mild" crohn's and had an anaphylactic reaction to two antibiotics last year. This year I had a serious reaction to Imuran, so for now I am not on any drugs
for crohns. Fortunately it has become quieter and I am hoping for a remission.
You mayfind it helpful to take a look around the different categories of this forum, especially the treatment section.
I wish I could be more helpful to you.
Hang in there
Hugs, prayers and best wishes
Trysha

 

[xJillx]

Hi Cindy! I am sorry "waiting it out" didn't work out. I think we can all agree we hate the idea of taking medication for the rest of our lives, but I don't think many of us have any other choice.

On a positive note, it sounds like you have a terrific doctor who has a good game plan. I have read that many have done well with Humira after Remicade has failed. If you decide to give it a try, I sure hope it will work wonders for you. Hang in there!

 

[thecrohn]

Cindy,

I was in your shoes a month ago, after being in the hospital for a week after my body developed an adverse reaction to Humira after a year of remission. Doctors wanted to put me on Remicade- but that had its share of dangers too. I had to take 2 months off work!

I decided to wait to try Remicade, despite the in the middle of the worst flare up I've ever had (GI said I had the most inflammed colon he's ever seen) and researched something called the "Specific Carbohydrate Diet," or SCD. I've been on it for a month, and i'ts REALLY been helping me. I am virtually medication free (tapered off from 120mgs of prednisone, now i'm on 15 and will be on 10 Friday) and have the first hard pooops I've had in over 4 months. Just by following a gluten free, lactose free, sugar free diet.

If you ask your doc about it, he'll say it's hard to follow and that he can't definitively say that diet will help you get better. I has a huge cult following and has been researched for over 100 years!

Google: "Breaking the Vicious Cycle" and "The SCD Experiment." Has a lot of good information. My sister brought me in touch with this and it's been changing my life.

 

[David]

To make matters worse, this weird backache returned. That's one symptom I had back in December. The pain is located between my shoulder blade and my spine. UGHHHH!!

Greetings and welcome!

1. I would bet good money that backache is due to your 6mp. Did your doctor perform a TPMT enzyme test before putting you on it? Are they doing regular blood tests to monitor you?

2. Have your vitamin and mineral levels in addition to the iron been monitored? With your symptoms, I'd be worried about things like magnesium, potassium, etc.

All my best to you