Husbands new diagnosis of the year
 

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 :hug:

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. :o:o 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.

:hug:

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. :hug:

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. :hug::hug: 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:mad: 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!!!!:p

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!:eek: I need a good sit down talk with my PCP. The chest xray says I have pnuemonia.

Yikes, Doydie! Both you and Charlie are having a tough time right now. I will continue to keep you both in my prayers. Please let us know how you are doing and what the doctors say.

Charlie's surgery is scheduled for next Friday. There was no cancer detected but lots of lymph nodes will be tested. He spent a whole lot of time with us making sure we understood the surgery, how much of a major surgery it was. Back when I was in nursing, even the smallest of surgeries came in the night before, got a sleeping pill and was well rested. Now he goes in 2 hours before. As with his other admissions, they call us like two days before and get history and such. Then Friday a special ostomy nurse will look at his belly and mark the spot and then she will follow him through the hospitalization and at home. Well not AT home but will have follow up visits at her place.

I am on an antibiotic and doctor said that I am not anywhere near the level where it is the worrisome level for that one test.

doydie,
It really is something these days with the 2hrs. before the surgery; no matter what type. The insurance industry rules....

Good to learn no cancer detected.

Prayers are with both of you.


Gerry

Keep us up to date...hope everything goes successfully in surgery and post...and make sure to drink water and take care of yourself!1:hug::hug:

Yes, in that 2 short hours, IV has to be started, vital signs, gown on, ostomy nurse to come in and examine belly, watch him move and they both decide where the best place for a stoma, try to teach us about what the surgery and permanent device is, family members try to spend some quality time, preacher to come in and help us relax and pray. All in two short hours. And from experience I know that sometimes they take the patient back to surgery and surgery doesn't start for another hour or so. The patient is then left on a hard surgery cart by themselves with a nurse in the room with him and others.

yes, that's all true.

i try to plant a seed of thought from what happened before my cataract surgery. each one; my had a massage therapist do a massage of out neck, shoulders & head. soooooo relaxing. it really was the best.

2 hours is really short, but sometimes they when they get held up on the surgeries they let the family members stay with them. That's what happened with my uncle's surgeries at least. He was given two hours to be prepped for a double bypass that ended up being a triple once they opened him up. But his surgery was delayed before they got him to the back so we got to hang out with him a bit longer. Gave time for the preacher to come along and give a rather funny attempt at a Catholic prayer. :D We appreciated the effort along with the comic relief. Hey we're in the south Baptists out number us greatly, Catholics are a huge minority down here, I think there are even more Jewish people than Catholics in my area.

Anyways I hope if he has any delays that's how it will work out for you as well. Though probably best if they seem to be rushing through things a bit since it gives you less time to think about all that is going on and you'll have plenty of time after he's out of the woods to learn about all the changes that may or may not have to take place afterwards. Since I'm assuming it's not an outpatient procedure. Seems like something he should be in the hospital for at least one day following surgery though one would hope more than that.

:hug: Prayers are with you both... get well soon... :hug:

I am so happy to hear that the masses were benign. That is good news!! I will pray that the lymph nodes will have the same results.

This is major surgery and recovery can be long (3 months to feeling a little better, 6 months to a year before feeling normal again). I did not have the option of having them determine where the stoma was going to be placed as my surgery was an emergency. (Went to the ER and within a few hours had an ostomy.) Start researching supplies. If the hospital does not inform the suppliers/manufactures and request a Welcome Kit, contact them. The 3 big ones are Hollister, Coloplast, and ConvaTec. They give you samples and information in the Welcome Kit. Also, after wards, they will send you a few samples of products if you want to try them. I have tried all 3 of the big guys as well as a couple of other ones. I ended up using ConvaTec as I was not allergic to their adhesive as I was the others. They were great in working with me and sending me samples of things to try as was Coloplast. Both ConvaTec and Coloplast are so wonderful to work with and will work with you and your WCON to find a product that will work for you. Get to know your WCON as he/she will become your best friend/advocate in the future.

Please know that I continue to keep you both in my prayers. Again, if you need any advice or if there is anything I can do to help you guys out let me know.:hug::hug:

trik, thanks so much for your advice. Do you think your prolonged recovery was because if was an emergency. I sure am hoping his recovery will be sooner. He is depressed enough now after having ulcerative colitis for over a year, diarrhea, diapers, horrible sleep, no appitite, etc. He is so looking forward to traveling again. Right now that is his driving force in getting better. I have read and reread your post and I am not figuring out what WCON is. He will be seen in the hospital by an enterostomy therapy nurse and this person will be available to him whenever needed. Of course no one has said how much it will cost for outpatient visits. Yes, I may be needing your help again!

Doydie, the surgery to create the ostomy was an emergency and I was pretty sick. My body had a lot of fighting and healing to do. It took me about 3 months to get through that. My 2nd surgery was complicated by post-op infections as well as C. Diff. That took me a while to work through. I am doing much better now. From what I understand from others who did not have a perforated colon/infection(s), such as those with ulcerative colitis, the recovery was much quicker. Some had gone back to work at 3 weeks! That's pretty impressive for such a major surgery.

An WOCN is a Wound, Ostomy, Continence Nurse. I think it's the same as the nurse you will be seeing. They are great and so helpful. I went to one a few months a few months after my surgery as the leaks were tearing my skin up. I was a mess. She had lots of ideas and tips and we came up with a routine that worked well for me.

thanks tkrik. Sounds like you had a horrible time but finally are OK. Did you have yours reversed? You may have told me and I forgot. Yeah, he is going in fairly healthy. His heart is in controlled condition. although he has a poor appitite and doesn't eat well, his labs are always good. Up until the last couple of months he walked daily about a mile. But just lately he just drives up to the river, parks and sits on a bench at an overlook and jsut sits there just listening to Pandora radio which soothes his soul.

doydie,

You had mentioned the surgery was to have taken place Friday, May 27th. Looking forward to hearing from you on how you and your husband are doing.

I hope and pray all is going well.


Gerry

Thanks Gerry. There is a post some one else made on him and his surgery and I have posted there. He is doing as expected and progressing well.