For the last 3 years he has been getting a new diagnosis like some one has signed him up for this terrible club. He had a colonoscopy last year and found out he had sever ulcerative colitis. After a year of treatment it is no better. So they did a repeat today. I was wondering why they put him in a room at the end of the hall away from others. No big news, the ulcerative colitis is just as bad as it was last year. But this year there are 2 masses. So the only treatment now is to remove the entire colon and rectum. Needless to say I was floored. I guess I should try to see this through his eyes. He said it will be a relief, no more diarrhea, ulcerative colitis cured because there is no more colon. i'm just a very nervous retired RN who took care of ostomy patients in the 70's!!! These masses were 2 1/2 cm and 3 cm. They were biopsied of course and we will get results in 2 weeks. I want it like Star Trek where they ran the tricorder over you and got an instant result.

Doydie

I'm so sorry. I'm sure being a nurse you know more about his condition than the normal person would. Sometimes ignorance truly is bliss. I hope everything goes well and Charlie can adapt easily to the new lifestyle this will surely bring.

And I hope you take care of you, too. As women we tend to get all wrapped up in making sure everyone else is taken care of and neglect ourselves. I am the biggest offender here. We're not helpful to others if we don't take care of ourselves, too. I should learn to take my own advice. It's pretty good!

Doydie, I am sorry to read about your husband.

This is not about me but a dear IRL friend of mine, with Crohn's Disease, was in a similar position to him.

Her surgery was successful and, five years on, she is fine.

I hope that will be true for your husband as well.

i'm sorry to hear this news about charlie.
how will he eat? will nutrients be absorbed?
you will be the best person to care for him.

please let us know how things are.
i certainly see your dh's point of view. i hope this will give him relief.

My fingers are crossed for you and your husband that all goes well and he finds the relief I'm sure he's desperate for at this point. Be sure to let us know how you're holding up as well as your husband.

And I agree that Star Trek med tool needs to be less sci-fi and more sci-fact soon.

I'm so sorry to hear about this year's diagnosis. Charlie really has had a tough time with all of this. I will pray that the masses are benign and that all will go well with his surgery.

As you may remember, a couple of years ago I had part of my colon removed and had an ostomy for a while (just recently had my take down surgery). It's a tough surgery but Charlie will feel much better after. It will take some getting used to but he has you by his side to help him through it, and he is lucky for that. A lot has changed in ostomy care since the 70s. The appliances are so much better than when I learned how to use them on patients during nursing school in the 80s. They're pretty impressive. If you need any advice or anything just PM me and I will help you if I can.

His diet may need to be tweaked and, as you probably know, since he will have an ileostomy dehydration is a big concern. Keeping hydrated is difficult for ileostomy patients. There are lots of forums out there where the people seem really helpful. Many of them have IBD (Crohn's or UC), colon cancer, diverticulitis, and other bowel issues. I can give you the names of some of the ones that I referred to when I was having trouble with my appliance (like leaks, rashes, etc.).

I will keep you and Charlie in my prayers. Please keep us updated.

Thanks girls. I was told yesterday that the surgeons office would call us in the afternoon with an appointment. When they didn't call yesterday or this morning I called them. The doctor doesn't even want to make an appointment time until the biopsy results are in So it's the waiting game for us. He showed me the masses on the computer and they don't look like what cancerous masses typically look like. It really looked like a single testicle!!!!

Yes, I need to take care of me. And Charlie is helping with that. I have been gaining about 5 pounds a week for the past 3 weeks. For those of you who know edema, I have 2+ edema of my lower legs ankles and feet. I do have some shortness of breath but not to bad. So the logical thing would be to order a water pill. But about a year ago I was diagnosed with neurocardiogenic syncope which basically means that the nerves in my lower half don't relay the message to the muscles in my veins and arteries to send blood back up to the heart and I pass out. So doctor said no water pills and keep blood sodium level to about 2300 mg. So I am between a rock and a hard place. Even doing that my blood sodium level is below normal just a titch. So I am very carefully going to take Lasix and keep check of my blood pressure (210/90) today. I also need to be diligent in watching my overall diet. I have been on a steady gain for over a year. No longer have a loss of 60 pounds. I gained back 45 pounds of that.

oh doydie
you are doing a delicate dance but seem to be so knowledgeable. i'm sure your management is excellent.

i know about the edema. when i got back from my stint in baltimore i had gained 5# and had 2-3+ pitting edema feet, ankles, even legs. except i am on lasix (which i couldn't take for 4 of the 7 days i was there).

i started taking it and in 4 days lost the 5# and now my legs are normal.
i also put on my compression hose and that helped. and, i was back to sitting in my recliner which i didn't have there.

i hope this passes and you get good control back. i know you can lose the wt again. try a bit each day and will add UP to a LOSS.

doydie,
I have been dealing with chronic pain for several years and am under Pain Management which included daily opioids, (Oxycontin) Because of this I deal with chronic constipation and the need for daily laxatives.

In Sept. of 2012, I went to the ER because I was impacted. Since I wasn't able to be cleaned out enough, I was admitted. After a few days, a GI doctor visited me encouraging me to have my first Colonoscopy since I was now cleaned out. I had been aware after the age of 50 , a Colonoscopy should be done but had ignored this wise advise.

The Colonoscopy revealed a malignant tumor at the top of the rectum. While still in the hospital, a couple of days later I had surgery. My rectum, along with a couple of feet of colon was removed. I had enough muscle remaining so the colon was attached to the **** area. At this time I do not have a colostomy. Lymph nodes tested were clean. I declined further treatment.

Although your husband's case is complicated, and of course; it would appear there is a good chance his mass is not malignant. We do what we have to and go on from there. He appears to have a good attitude, which is a "big plus".

I also deal with edema. I take a daily tablet of Spironolactone; which is potassium sparing. It really has kept my feet/ankles quite normal most of the time. Taking the Spironolactone also has helped keep my blood pressure close to normal. I was able to lower my dose of Lisinopril.

As Kitty mentioned, you need to take care of yourself first, which of course, will help you be there for your husband.


Gerry

Again, thanks girls for all your support. The surgeons office called to day and he has an appointment set for 1 PM tomorrow. I am glad we don't have to wait 2 weeks although to me it is scary that we got an appointment that early.


Remember i said I had several lab tests and chest xray right after my appointment. One of the tests she ordered was a BNP. I had never heard of it. Well I got the lab reports back today through my electronic chart. The BNP was 178 and normal is 0 - 100 so I looked it up. It is a measure of heart failure! I need a good sit down talk with my PCP. The chest xray says I have pnuemonia.