Crohn's Disease - Hating it

[Marinemom]

I have had Crohn's for 25 years and i am sooooo tired of being sick and tired!!! I have had 7 bowel resections, anofistula repair and on numerous meds that don't seem to work. I am now on Cimzia and that seems to help some. I do hold down a full time job, frustrating at times as i have chronic diarrhea and the fear of having an accident runs my life daily. I am in a state of panic all the time. Not really a good way to live. I am turning 50 on 9/27 and had not planned for my life to be like this....always running to the bathroom. I am hoping things will change but i have been hoping for 25 years. Thank you for letting me vent :>)

 

[David]

Hi Marinemom and welcome to the community.

Wow, that's terrible I'm so sorry to hear that your quality of life is so negatively affected. Some thoughts and questions:

1. With that many resections, are you on a special diet or do they monitor your vitamin and mineral levels VERY closely? For example, what is your vitamin B12 level?

2. Do you do anything special to maintain proper hydration and electrolyte balance?

3. With that many resections, I'm guessing you no longer have your ileocecal valve which can play a part in your frequent diarrhea. I suggest giving this thread a read about psyllium husks. It has been a life changer for some here.

We're here for you!

 

[Earnellzwifey]

WOW!!!! you know how they say there is always someone out there with it worse than you. Well after reading your post I will not be complaining about having the big d for 6 years any more.

I agree with David I hope that they are keeping a close eye on your vitamins and electrolytes. I have not had any resections and I have severe malabsorbtion issues with just about all vitamins.

With all those resections have you had a stoma before? If so was that easier to deal with than the constant bathroom runs. I have read post from many with permanant stomas and they say that have been a life changer for them as well.

All I can say is that I am so sorry that you have had to suffer so many years with this horrible disease and sending you wishes of remission.

 

[Marinemom]

Thank you for you words of encouragement. I am vitamin B12 deficient and have been taking B12 injections for years and still below the threshold for having a normal level. I also had to take 48 iron injections and now on prescription Iron for anemia. I have been on every medication for Crohn's and actually coded on Remicade in the doctors outpatient clinic during infusion. I am off balance and dizzy alot and get leg cramps from i am sure potassium levels. By Gastro says that all my blood work (i get a draw every month) has came back normal with no concerns. There are times when i am up to 11 times a day (bathroom) and sometimes after getting up at night going and as soon as i lay down i have to get up again. Lack of sleep has put me in a depressive state as well as just dealing with my disease. I have had 4 bowel obstructions since april that all warrant a trip to the ER and overnight stay. My doctors has never brought up my diet as i kindof know what not to eat. No red meat, fruits with pulp, no acid juices, lactose intolerance, salads, fresh vegs, beans, etc.. But I still have a weight problem. All my surgeries have been in the ileum area except for one in the large bowel. So yes i am frustrated and would welcome any advise for the nutrition part of this disease.

 

[David]

I would look into and discuss the following with your doctor:

1. Enteral nutrition
2. Getting your magnesium levels tested (and every other vitamin/mineral they're willing)
3. Getting your B12 injections increased to get you into the optimal range
4. Psyllium husk for the diarrhea that I linked to above.

 

[Marinemom]

Thank you David, I will certainly look into what you have posted.