5 Surgeries with no end in site

[vz101]

Well I was officially diagnosed about 12 years ago but had symptoms my entire life. About 2000 I was mis-diagnosed with a swollen prostate, appendicitis, appendicitis again with an appendectomy, and then an ulcer. The appendectomy led to abscess. In an attempt to relieve the swelling the surgeon, in my hospital room made an incision which turned into a fistula that would not heal. Another surgery followed later that year to repair the fistula and repair the area where the small and large intestines meet. My symptoms gradually got worse after the usual drugs: Imuran, Pentasa, Bentyl, Remicade, Humira, and Prednisone. Which resulted in small bowl resections in 2008, 2009, & 2010. In late 2011 I was hospitalized for low cbc levels (5) due to blood loss and Iron absorbsion issue. My symptoms are growing worse. I deal with cramping, a dull aching gut, and constipation due to having the stricturing disease. Extreme fatigue is also a problem. Currently I am using Humira, Entocort, Prednisone, B-12 Injections, Protonix, Zofran, Folic Acid, Iron, Calcium, and Vicoden. One of my docs suggested I may have some IBS symptoms as well so we have been experimenting with Antidepressants but they have had not worked. Thats the condensed version of my Crohn's history.

I am also the luck father of 3 beautiful girls, have been married for 18 years, and work as a telecommunications engineer.

 

[David]

Hi vz and welcome!

Wow, that's quite a story I'm so sorry to hear you've been through so much. If you're interested in sharing, we might be able to offer some additional thoughts:

1. How is your CBC these days? What's abnormal?
2. What was your specific vitamin B12 level the last time you were tested?
3. Have you utilized any form of enteral nutrition?
4. Have you had your vitamin D levels tested? If so, what were they?
5. Prednisone causes decreased absorption of calcium and phosphorus from the small intestine. It also causes increased losses of calcium, zinc, potassium and vitamin C, all of which Crohnies can be deficient in WITHOUT pred use, so it only makes it worse. Have you had any of those levels tested other than the calcium which I see you're on.

Let's start there so I don't overwhelm you

Again, welcome! All my best to you.

 

[Angrybird]

Hello and welcome to the forum. I am sorry to hear that after those ops and all these meds you are still struggling to feel well :hug: David has already asked what came to my mind question wise so I will leave it at that (for now anyway ).

AB
xx

 

[nogutsnoglory]

I'm so sorry you are going through all of this. This is a wonderful supportive and informative community. You are in my thoughts and prayers.

 

[vz101]

Thank you for the replies. My apologies for the late response. While on the prednisone my CBC was 12.1. That is the highest I have seen it. During Venifur infusions it was hanging around 10.1. For some reason the pred has helped in that respect. My GI decided to stop the enticort, in an effort to get of the prednisone. I do not know what my B-12 level. It was checked a few months ago and reported back as being in the normal range. I do take Vitamin D supplements daily. I also have calcium, and a prescription based Iron supplement. However if I take the calcium and Iron regularly it constipates me. I have never tried the enteral nutrition. But do limit my intake of fiberous food and meats. I eat a lot of eggs, chicken, and soft foods.

Lately I've been dealing with both calves swelling by the end of the work day, and getting up multiple time throughout the night to urinate. Anyone else having that problem?

 

[vz101]

This will be week number 3 for venifur infusions. My CBC was down to 8. It does seem be slowly improving my energy levels. I have been using tramadol(Ultram) for pain but thinks its causing a slight rash and a general itch feeling. Calling the doctor on the way home from work to see what my alternatives are. Ive used vicoden in the past but would like to avoid using it again.