Total Colectomy 2011.1

HAHAHA Rosemary that would be neat if you could come to the dr with me :D

i don't think there's a point in asking my current dr anything, he's just not cooporative and he doesn't think i have a fistula.

the new gastro dr's office called. they had a cancelation and can fit me in on Feb 9 (originally scheduled for March 17) YAY. so will see what this new dr has to say about all my symptoms + slow motility.

yeah, i think a libel charges is due here!! he can't say lies about you and get away with it! you're fight is a hard one, but you'll make it, Rosemary! you're gonna get'm!! good for you for not giving up on this. i don't think i would have ever been able to go through something like that. takes a lot of guts standing up againsts those drs.... (and we don't have much left of that LOL).

I am having an endoscopy at 12:30. This is only like my fourth one. They just want to make sure I do not have any ulcers and just to check things out. I have gastroparesis but other than that don't think this test will show much.

I have discovered that if I drink Dr. Pepper it seems to make my bowels move. So if I am careful about what I eat and drink the soda maybe that will help. At least for now. I am not a big soda drinker but if it helps I will drink it. Does anybody else find that drinking soda helps?

Jen

Jen, with your gastroparesis (I also have a GP diagnosis), has anyone ever tried or mentioned Domperidone? It's a gastroparesis med that has not been approved by the FDA, but it is used frequently in other countries. There are doctors in the US who prescribe and are able to get it (usually through Canadian pharmacies) for their patients. If you haven't tried it, I think you should ask about it before making any decisions on further surgery, especially considering how your gut reacted to the hysterectomy and the on/off ileus problems you're still having.  Soda and I don't mix (doesn't do anything but fill my gut with air which I can't get out), so I can't comment on that helping.

 

Sarah, any news on your Hickman? Praying for protection from infection for you!

 

Just had a follow-up with my primary and I still tested positive for Strep even after 10 days of Ceftin. A day and a half after that round of antibiotics was finished, the sore throat, cough, aches, and rash started to come back. So, today starts round two of stronger antibiotics (Augmentin this time).  Hopefully that does it. They also did a throat culture to see if there is anything else growing back there. Also got some bloodwork back that was done about six weeks ago (before having Strep)...my WBC count was low, but not terribly, and my MCH (average amount of hemoglobin per RBC) was high. Hemoglobin was over 14, which is great. I doubt it's anything...I have had every autoimmune and infectious disease test known to man run and everything is normal. The thing that is odd is my getting Strep. Aside from GI problems, I am rarely sick, and it has never taken a second round of antibiotics to kick something before.

 

Allie

Hey Jenn, I also have an endoscopy scheduled for next week and also wonder why?? I really doubt anything will come of it. I was also diagnosed with gastroparesis last year. But I was never put on any drugs for it. My doctors seem to think that I am also a weird case. And then they dont really think I am feeling the way I am. I just do not know. Do you joints ever swell up and become painful? That is another thing that has been happening to me. It is getting worse each day. Personally I think I have some kind of autoimmune disease that is wreeking havic on my body. I just wish something would get figured out. I am so tired!!

Any news on Lizzie? Been wondering how she has been doing.

just a quick update: went to the ER today because of the dislocated hickman catheter. one of the two docs with whom I have already dealt was there, and she is pretty kind. she camea nd wanted to take a look at the hickman line herself. when she wanted to find out how deeply the catheter was still attached to the tissue she just grabed the line - ans suddenly she had it in her hands. Only a portion of 3cm of the line had been still lying under the skin. I was actually shocked as I felt and had told the doc one weak ago that the line seems to be very loose and slip out.
how many times I will have had to prove that I am not insane, overacting, and have a good body sense before I will get taken seriously, not accused of psychic stuff etc?
the kind doc was very astonished, too.
As I have been off feedings for some time now and I am not losing weight despite my little oral intake, my GI and I decided that no new catheter should be reinserted for the moment since I am at high risk to develop sepsis/infections due to my bladder issues.

Post Edited (pelztier86) : 1/24/2011 3:54:51 PM (GMT-7)

Peltz........Please do this to get off the hook with these awful accusations of psych stuff.........Get the kind lady doc to write a note saying that the thing slipped right out of you after you had reported that you thought this was happening. Have her put it in writing that you are very experienced with this and know the signs of a slippage.

Capitalize on this request now because it is fresh in her mind and she obviously believes you.

Rosemary

Jen,
Here is the link:
https://www.healingwell.com/community/default.aspx?f=29

Peltz it is Marisa who is having the joint swelling. I do not have any problems with that at this time. My biggest issue is gastroparesis and slow motility in the small intestine.

My endoscopy showed a hiatus hernia but everything else looked ok. He did take a biopsy of the small intestinal lining. I am not sure what that will show.

Allie I have tried Domperidone in the past. It messed with my hormones or something because it made me have a period basically every two weeks plus discharge from breasts. So I stopped it but now that I have had a hysterectomy maybe I could try again. I guess that is something I need to think about.

I have to go back to work next week.....so worried about that but I gotta work.

Jen

Hey. I have had chronic constipation for 4-5 years now. Over those 4-5 years doctors have had me try more fiber and water, tons of mirilax, colace, amitiza, zelnorm, laxatives, enemas, zelnorm, suppositories, etc. Nothing has worked over those times. I have had several x-rays done each year, every one showing large amounts of stool throughout my colon.

I had a colonoscopy last january which showed everything to be fine. I had a small bowel follow through today. The paste went to the end of my small intestine in like 30-40 minutes, but then just sat there and didnt go into my colon for 4 or 5 hours (it also once agian showed stool filling the entire length of my colon)! I feel like my large colon itself is just dead/slow (is that why the barim was just chilling out near my ileum?). The follow through showed normal dilation, normal muscles, no stricturing, etc in my small bowel.

I am doing a sitz marker test and a mri pelvic floor defecography in the next two weeks then meet up with my doc to discuss on the third week.

I have also had anal rectal manometry and was able to expel the balloon. The only abnormal finding on that was I had slightly above normal sensation threshold levels, and slightly lower then normal resting anal pressure. We tried biofeedback after that for 3-4 months with no luck.

What happens if I go in and there is nothing wrong on the sitz (no inertia), but maybe some pelvic floor/puborectalis issues. I have tried biofeedback and that did not work and seems to be the only treatment for it. Will I be doomed to live with this forever, or will any doctor be willing to do surgery to improve my life? If there is nothing wrong with the defecography, but only mild colonic inertia or any indication of a messed up colon will the doctors be willing to take out my colon?? I just want to be able to move on with my life.

I am a 22 year old male and got into medical school, and was granted a year deferall to deal with this, and want to resolve it before I start my path in the medical profession. I wont have time in medical school to juggle studying, living, and managing my god awful bowels.

Hi Baot and welcome,

You are getting a good complete work-up so that is a good thing. I have a permanent ileostomy due to severe damages to my colon, rectum, and small bowel that happened during a sigmoid colon removal for supposed sigmoid redundancy that I turned out not to have upon review of my case. Small bowel could be repaired and ileostomy, the rest of me is toast. Am hoping to stay well as ileostomate.

In your case, my guess is if it is only your colon that has inertia and your small intestine and your pelvic floor and anorectum work fine, and you could poop out the balloon, then my guess is they may offer to take out your inert colon and hook your small intestine to your rectum. But before you let them do this, be sure and have a pudental nerve terminal latency test to be sure the pudental nerve to your rectum is also working.

If your colon is inert AND your rectum/pelvic floor does not work right, then they would be thinking ileostomy, but you are sooo young they would likely not like to do that even if that may be what you need. If you get that lots of us on here can help you along.

I had no motility issues at all. My original surgeons do this weird low anterior resection and multiple internal prolapse repairs on internal prolapses I did not have. They do this template surgery on everyone who walks in their office and lots of people die. I fell into bad medicine and am suing. BUT most people on here have been worked up thoroughly as you have and do various things with their docs who have honest good intent. They get varying results. But they are dealing with honest docs as most docs are.

If possible, have whatever you have done, done laporoscopically because open surgery lends itself to adhesions that can give you pain or small bowel obstructions, especially if you are an adhesion former.

I have major education in the anatomy and medical field I never wanted to know about but learned the hard way. So far so good as an ileostomate and am traveling the world and ballroom dancing. My only threat is possible recurrence of small bowel adhesion reobstruction, but so far so good. After my ileo doc cut all my adhesions in 2007 that formed from the overly invasive unneeded surgery of 2006, he put in an adhesion barrier called Seprafilm then made me the ileostomy necessitated by damage of the 2006 surgery. SO this good doc did what could be done to save my life. So if you have any surgery ask about what they do to prevent adhesions.

I can see why you want to get this straightened out before entering medical school. It is good to have a male post to this board and I'm glad you did. The rest of us are so far all women, some in their 20's,30's,50's so this will be good for all of us to share info and different prospectives. Best of luck and let us know how your tests turn out. Sincerely, Rosemary

Thank you. I looked at the symptoms of pudendal neuropathy and the only symptom I have of that is the constipation. No pain, burning, aching, etc. The only time it feels like there is a "foreign body" down there, is when there is a hard piece of stool down there I need to dislodge myself :(

Hopefully I dont have anything like that

It also seems like this forum is more for those who continue to have problems. Are you guys in the minority, and do most of the people who have this procedure have success? reading through some of the old threads it seems like there are some cases f permanent success/hope.

Hi Boat,

YES, there are more successes than there are those with permanent issues. Some of us that are well, just like to stick around and lend support to those who still need it. Many have come to this Board, gotten totally fixed up and then completely moved on. So do not hesitate to look for and find help and move on with your life.

Let me give you the title of a great article that you can google and download and printout for free. It used to cost 99 cents on your credit card, it's now free:

Google: Physiological Testing of the Colon, Rectum, and Anus. It is a very comprehensive article by Bruce Orkin, MD from George Washington University in Washington, DC. It is purely informational but makes a LOT of sense. A very complete work-up is essential to find out exactly what the problem is, if there are any co-existing issues that may not be helped by surgery. If you have only one thing or even multiple issues that CAN be surgically corrected successfully, then you will be fine. See if you can get this article. I know those who have had most of these tests and they are not as bad as some of them sound. If I were starting from scratch, I would make an appointment with this doc. Just my opinion.

Rosemary