Rosemary in the hospital

Do you think I should ask my PCP for a sed rate blood test? That tells if there is any type of systemic inflammation going on in the body. Seeing as my CT scan showed inflammation of my retained but unused cecum maybe there is some systemic inflammatory issue going on with me that then causes the stoma to swell?

She said she would try to help in any way she could though this is not her field of expertise. So she is with me if there are simple things I know to ask for. Rosemary

Also is it possible for someone 56 to develop Crohns??? Never had it but stranger things have likely happened and in my case God only knows. Rosemary

Gilda

I was just thinking of you the other day and was going to post that if your ileo is working be thankful and accept the bag as a working ileo is not all that bad as compared to one that has stopped working.

BUT I am very sorry to hear that yours quit working too (by the sounds of your description). Soooo sorry to hear of the psych ward thing I am working to avoid that at all costs. Where is your pain?

Mine is right over the stoma though I have no peristomal hernia and supposedly no narrowings yet a very tight swollen stoma that appeared out of nowhere March 11 when all stopped working.

I think the test your doc is going to do is an ileoscopy where he puts you under (sort of) then puts a finger in your stoma then goes in a ways with a scope. I had the offer if this but chickened out then went into my sbo the very day it was to be done. But when the GI doc saw my stoma he said he could not even have gotten the scope in there.

My retrograde ileo enema xray I was awakw and very painful. Small catheter in stoma then filled me up in small bowel with contrast and looked for narrowings. Was done gently just a painful test. Then no narrowings found.

Even before all this testing my stoma has been very swollen and has lost its peristalsis I have to lie on that side and let poop drain out of me or walk miles. My output is way down. Am really scared. Good luck gilda and let us know how you do. I am scared I am going to die or end up on permanent TPN not an way I want to live.

I sent my new GI doc who is trying to help me since my new ileo surgeon in essence dumped me and outlined all the trips I have been on since getting my ileo when it worked and told him of my 17 years as a reading teacher prior to falling into all of this as I wanted him to know me as a whole person not just one with issues. This doc is very serious and very caring and I am sure he already has the picture but I just wanted to be sure because I could not take a psych ward.

Rosemary

Woops sorry I hit the submit button twice. These Blackberries have such tiny keys.

Thanks tracy good to talk to you. My stoma was swollen prior to all the invasive tests so they did not cause it. It does not seem to be more swollen due to them. I will ask the GI if they can safely do a colonoscopy and remove the mucous and old stool that is inflamming my cecum in the retained yet unused colon. That is where I get the pain. I wish my original ileo surgeon had removed my colon when he did the lysis of adhesions and ileostomy but it took 4 hours to take down all the small bowel adhesions he likely did not want to remove the colon and make more adhesions by doing that. I know he must have had good reason to leave my colon in me but I am worried about possible mucous perforation like your doc mentioned to you if you leave in an unused colon. Rosemary

Hi again Rosemary; I hope you are doing better, at least right at this moment! I have been learning to live my life; moment by moment! There are times when I am out of pain and feeling good and when one of my family members asks me how I am, I say . . " I am feeling really good." Then, if the next day I feel horrible and tell them they say, " we don't believe you anymore, how can you feel great one day and like you are going to die the next! The reality is, " I really feel pretty awful at least 60% of the time and on those days, can't even get out of bed. When I feel really ill it is because very little to just a little watery output comes out of my stoma and I have tremendous pressure/pain literally "up the butt." I hate to be so graphic but it feels like I have been sodomized or had a metal pipe shoved up there. Lately I have gone back to using Canasa Suppositories; they are really meant for Chrones/UC patients but since my rectum is "disconnected" they say it is becoming inflamed and maybe I have "diversion proctitus" now. When my abdomen hurts also, I just stop eating; except for Ensure or Boost (I would be dead if it were not for those 2 products). I am in pain at least 65% of the time and used to take about 4 Vicodin in a 24 hr. period; also often I had to take at least 10 mg of Valium to be able to "knock myself out" so I could get some sleep (this would get my output going also). Now, since I really "flipped out" from so much pain, back in February 2012, most of my doctors won't give me any pain meds or anti-anxiety meds. Luckily my pain management doctor is giving me 25 mcg of Fentanyl every 3 days; this, at least, takes the edge off the pain! I hate to say it but "life really sucks sometimes, doesn't it?" I just want to live like others do; being able to eat and to actually go and do something once in a while. Most days find me, at home, in my p.j.'s all day; trying very hard to "keep my head on straight." My husband is a good guy and does try to help but I think he would "run out the door" if he wasn't such a dedicated husband. I hope for all of us suffering these problems (you, me, Lizzie and anyone else) that God "steps in" and helps us resolve these issues, and soon. I don't understand why we have to suffer this way! I will definately share any info I get next week. Maybe my GI will discover something that can be useful for all 3 of us! Hey, I might get to see Lizzie (and her new house) this summer. We are both from the Grand Rapids, MI area originally; she still lives there and I visit that area almost every summer. Maybe you could join us! Better yet, when you get well, why don't you come and see me in San Diego? I would love it! I will keep praying for your quick recovery. You are a wonderful friend to many and we need you! We are all "rooting" for you to get well.

Love, Gilda

Post Edited (Gilda) : 4/13/2012 11:50:06 PM (GMT-6)

I keep thinking of "one more thing" I should tell you. My GI said if the colonoscopy of the ileo plus the rectal scope (all done while I am asleep) doesn't show anything; then he wants to order the "camera test" the one where I swallow the camera pill. I am kind of afraid that this could get stuck! Has anyone ever suggested that you have this done? If anyone else reading this has any info. on doing this test on patients with problematic ileostomies, I would sure like to have you share what you know

Just wanted you to know I am still thinking of you and praying for you. I think we have somewhat similar problems because we get pain in the same areas plus I know, at times I get partial blockages which are very painful. When I feel this way either nothing comes out of my stoma for a while or it is just a very watery output. These are the things that help me the most at these times:

1. rest a lot and really try to relax; listen to very relaxing music, watch funny U-Tube Videos, put a heating pad (on medium) behind my low back. Tell myself over and over (if necessary) that, "This too shall pass" (LOL although it's not that funny at the time).

2. Take 5 or 10 mg of valium; this really relaxes me, often puts me to sleep for an hour or two and often, when I wake up I find that a more "pasty output" is in the bag which definately gives me some relief.

3. I am now using a 12.5 mcg Fentanyl Patch to keep me out of pain; this seems to help keep my ileostomy working. If my pain starts to really increase, I put a 2nd patch on (my pain doctor said this is o.k.).

I don't like using pain meds at all and hope there is a day I can go without using them BUT; if I stay in pain for very long the blockage gets worse and worse! You don't really have that much pain though, right? More of a bloated or distended feeling? When I start feeling even a little bit better and more "with it" I go out and take a walk or take my appliance off and take a warm shower. The warm water running over my stoma seems to help "get things moving."

Other things that help "get things moving" . . . . drinking a beer (it really does help), drinking hot tea, eating chocolate

I do think that the mucous in your colon is probably causing a lot of your problems. I say this because I only have my rectum and maybe 2-3" of colon left but using the Canasa Suppositories (reduces inflamation) does seem to help. Have you used these before?

Can you tell me (before my test on Tuesday) if you know if having a "Colonoscopy thru the Stomo of an Ileostomy" is the same test you had? I am kind of scared to have it done; they are going to "put me out" but I just don't want more damage done to my intestines.

I REALLY hope you start feeling much better today. Remember, this could be just a short (but miserable, I know) set-back for you. In a day or two you could be feeling really good again! I will keep praying for you my dear friend.

Gilda,

It's a bit on the sicky sweet side but if you can sip on a dunkin donuts coolata it just worked for me whatever my issue is....................swollen stoma..................slow guts whatever.........a cup of that totally cleared out an egg and cottage cheese and crackers I had for lunch that was stuck in the stoma trying to move out. I think it has chcolate, caffeine. Coffee, all poured over ice chips. It may have even had sorbitol this fake sweetner that is good for speeding up guts. Just a little trick I discovered while out today.

It is really pretty this time of year here in the northeast with the forsythia and some kind of purple flowering trees. I would just go crazy if I could not get out. No matter what is in store for me I have to keep nourished enough and mobile so I can get out days or I would just go crazy. Rosemary

Thanks allblue, night is the scariest as I am alone. Love you all. Rosemary

Thanks Roni. Yes, I remember you. I think we were working on clearing our peristomal burns together. Well I cleared mine with the Stomahesive paste and for some reason about 2 weeks after I switched from the Eakin Seal to the Stomahesive paste my stoma swelled, lost all it's contours and most of its ability to pump poop out. Then I had an sbo all easter weekend. TONS of tests showed no structural issue. Sure hope I am not entering the land of pseudobstruction.

BUT as a little simple experiment I am going back to the Eakin Seal and just PRAYING my stoma was allergic to the Stomahesive paste and that it will go back to normal function. LIKELY too much to ask for but sure an easy experiment.

Glad you got a new computer. Sorry about the ileus. When I had that I welcomed that NG tube as I felt better decompressed, but I was throwing up poop with my ileus so I did not have a choice. HOpe your ileus does not last too long. That is misearable. I was sure I would get many more good years from the ileo than 4 and a half, but hey it was the gift of time and sure glad I used it to cruise non-stop and ballroom dance. It's where my heart is. Had hardly anything to eat today and am really bloated. At least I connected with a great GI doc who rescued me last weekend. I hope he will have some more ideas for me.

Hope you have a better recovery and that your take down works out well. I used to be like "oh If only I could be put back together," Now I am like "I just want this ileostomy to work as well as it had been right up til March 11 of this year." Perspective taught me Have a good night. or try to anyway. Thanks for message. I am also going to ask if I might have some gall bladder involvement in all this. My CT scan showed gall bladder wall thickening. HOw I wish I had not gone this road. Auuugh> But job now is to get back on track best I can, if I can. Rosemary

So like NO output overnight. Went back on clear liquids today and NO output. GOing back to be and lie on my stoma side and pray that something comes out. Later out for a walk as I refuse to miss this nice weather. I have NO clue what is going on. Monday I will call the GI doc and see if they have a sooner appt than May 2. If clear liquids aren't going through me I have no clue what the issue is or what to do about it. NO appetite what so ever. Rosemary

Hi gilda people with ileos are never supposed to do a laxative prep or you will dehydrate. So clear liquids 2 days is the right thing to do. I got things over going with a fake sweetner ice cup and grape juice and lying on my right side. Then I ate an egg and pancake and things came to a grinding hault. But am out and about just being sure to drink a lot.

You can get some protein from chicken broth. Just be sure to skim off the fat.

Unused colons don't die they have their own blood supply and keep making their own mucous worse luck. May go for a consult at a hospital out if my area regarding that. As I have a lot of mucous and believe it or not old infected stool in my cecum part of my unused colon. Glad I fought for that ct scan so at least I know what I am dealing with. Could explain the pain in my right side. I hope they can go up with a scope and suck all that out of my unused colon. Under ideal circumstances the original ileo doc likely would have removed my colon but he had all he could do with lysing all my small bowel adhesions. Good luck on the test. Versed is great stuff. Praying that stoma swelling goes down I will see if no paste is helping with that when I change my wafer in the a.m.
Rosemary

Post Edited (esoR) : 4/15/2012 2:40:59 PM (GMT-6)