GI Symptoms in Colon-less Individuals - Seeking Advice

Hello,

I do not post much, but do read them.

I have a question I hope will get a reply.

I have had my ileostomy about 6 years, and an internal pouch before that. I have been having terrible GI issues for quite some time, and have been seeing a functional medicine doc and nutritionist.

At first it was SIBO and still may be, but now the theory is because I don't have a colon, but my small bowel has adapted and taken on characteristics of a colon, that bacteria that is normally in the colon is in my small bowel, and that is what is giving me my symptoms of cramping, gas, stomach pain etc.

I am wondering if anyone without a colon experiences the same GI symptoms. They are saying that you can't get rid of it all because you need it for immune function and other things. So I guess the trick is to heal the gut and balance the bacteria that should not be there, the gas and cramping is close to being disabling.

If anyone can help and comment on this, I would appreciate it very much.

I have made a long story very short, so if anyone has other questions, please let me know.

Thank you all in advance.

Elaine

I do not have your troubles, but I find chamomile tea very soothing....... hope you find something that helps.....

Thank you

Tangleloft--I see you are in Massachusetts. Pot helps significantly. If you are against using medicinal marijuana, you can try simple solutions like probiotics, prebiotics, and OTC help like Beano for the gas. The bacteria in your gut is necessary to help your immune system operate properly. Getting the balance right is the hard part. I too have no large intestine (colon) as the surgeon took all 5 feet of it because he 'thought' he saw "some" damage--it was inflammation from medications to which I was allergic--he also took a perfectly healthy gall bladder and right ovary. That's another story. I have all of my small intestine--22 feet--and it has taken on a bit of the normal behavior of the colon (large intestine) in that I can actually get a pretty thick output with my diet controls, but it will never be formed stool because there is no large intestine to absorb the liquid, which is one of the main purposes of the colon. The small intestine doesn't have the ability to absorb as efficiently as the large intestine, kinda strangely, as the large intestine is only about 5 feet and the small intestine is about 22 feet. Large and small refers to the diameter of the intestine, hence the irony. I have never suffered gas, stomach pains, cramping or any symptoms of typical IBD, Crohn's or ulcerative colitis, probably because they were never the issue in my case, but as I said that's a whole other nightmare story of inept medical care and I won't bore you with it. Bottom line, an ileostomy is not likely to ever have formed stool, but that does not mean a reversal cannot take place and be successful. But if you are suffering bacteria imbalances you are likely to suffer from diarrhea, and that can be as troublesome or more so than an ileostomy. Good luck with your reversal and let us know how things go for you. You will always have support here through the members on this site.

Peace

Nancy

Thank you, Nancy,

It does help to hear someone else's story. Yes, I have not heard of many, if any, having my issues. The doc I am seeing says most people have some part of their colon, but I do not agree. I don't think most people realize what I am talking about.

I too have had my gallbladder, ovaries, a total hysterectomy removed.

Unfortunately, I am not having a reversal, I do not have a colon. That supposedly is the problem.

Thanks again for your reply.

Elaine

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Elaine, I have been seen by a number of colon rectal surgeons. Every one of them agreed that a reversal is doable, even though I do not have any large intestine (colon) left. They are all also in agreement that I would always have loose stool and would be susceptible to diarrhea with any bacterial imbalance. My reason for not having the reversal is that I have NO faith in the medical system. My situation never should have happened to begin with, and mishandling of my care and disregarding my self-advocacy regarding drugs to which I was allergic caused the hemorrhagic blood loss resulting in a forced surgical procedure that never should have happened. I was lied to, lied about, and had pathology reports withheld from me, resulting in surgical permission that would NEVER have been given had I been told the truth. I was poisoned by drugs that were already on record as having exactly the reaction as I suffered in the hospital, and even after I refused to take those meds, they were administered in nutrient supplements via IV, without informing me and against my explicit directions. So, for me, it's a matter of faith, or lack thereof.

If you ARE interested in reversal, I suggest you also look into the BCIR surgical procedure (Barnett Continent Intestinal Reservoir), which is a different method of dealing with the loss of a colon. If your ileostomy is the result of ulcerative colitis and not Crohn's, there is the possibility that you are a candidate for this procedure. Even if it was Crohn's, but there has been inactivity for over a year, you could still be a candidate. Palms of Pasadena in St. Petersburg, Fla. has a very competent staff and a good record with this procedure. Just another option. They may have suggestions as to why you are suffering from the bacterial imbalance and resultant problems.

Peace

Nancy

Thanks, Nancy,

I actually had the BCIR for a year and got it removed. It didn't work out for me. I had complications after the surgery and was in FL for 6 weeks. Nurses were great, doctor nurses were something else.

Let me know if you want to know anything about them or the procedure.

Thanks,

Ekaine

Elaine--Thanks, I would appreciate some input on the BCIR. Is it all it's cracked up to be? I do not have any ongoing issues, and as I said before, although the doctor wanted to diagnose my situation as ulcerative colitis, the pathology from Mayo Clinic, that was given to me months after my surgery when my lawyers demanded it, stated that my condition was 'Self Limited colitis, caused by drug reaction". Unfortunately, I had been intentionally misled by the surgeon claiming that I had pre-cancerous cells (I did not) and that the damage to my colon was "extensive", it was not. So my faith in medical professionals is quite shaky. I would, however, prefer to have a system where I could use a catheter to empty rather than a pouch, as the expense of the set up as it stands right now is significant. But I have read both good and bad reviews about the procedure and about the doctors at Palms, and your input would be welcome and helpful. A timeline on healing and the likelihood of hernias is also data I would appreciate. I would also like to know what kinds of issues could happen to cause a patient to have the system removed. Thanks for your input.

Nancy

Nancy, sorry it has taken me so long to get back to you about the BCIR.

Yes, I went to Florida in October 2011, had my colon, rectum, hysterectomy, and gallbladder removed, and got pancreatitis. What was supposed to be a 3-week stay ended up being 6 weeks.

After the surgery, I was never in so much pain, and I have had more surgery than I care to admit.

You are hooked up to a constant suction to empty the pouch which was created. After a while, the suction is stopped. I had so much gas I was crying to get put back on.

When I finally came home, I was never comfortable. I would empty the pouch with not much trouble, but it seemed I had to empty again in a short period of time. At first, you have to increase by an hour until you get up to holding it for 12 hours. That is done to stretch the pouch so it can hold a lot for a good amount of time. That was not too much of a problem, but things just didn't feel right. The other problems are pouchitis, of getting a slipped valve which usually means more surgery to repair. When I was there, I kept seeing people coming back for all kinds of problems. Right then I questioned if I had made the right decision. To this day, I feel I made a mistake in getting it.

I ended up going back to Florida about 8 months later to get surgery for an SMA which I had the first time in 2004. No one here would touch me for anything because of having the BCIR, so I had to go back to have a second surgery for the SMA. When he did that surgery, he found the pouch had dropped and out of position, but don't know why. I thought that was why things just didn't feel right, and I think it was because right after I came home things felt better as far as the pouch, but after some time it started feeling like it did before. I never went back, but decided to have the pouch taken out. That was a bit of a problem, again no one wanted to touch me with that. I ended up going back to the surgeon who gave me my first ileostomy in 2004. Yes, I had that a first time and got it reversed, back to the natural way, but did not last.

I will let my story rest for now, unless you have any questions and I will be glad to help if I can.

Take care

Elaine

Elaine, thank you, thank you, thank you. I am so sorry for your experience and so grateful you are willing to share it. I do have another question, though. You stated that you had your original ileostomy reversed, but that it failed. If you are willing, can you say why it failed.

Thanks again,

Nancy

Nancy,

I guess it was a little confusing. I had a pelvic floor problem which is why I got the ileostomy the first time. I had the first surgery, and was no better, in fact worse. The doctor that gave me the ileostomy said if I could find someone to fix it, I could get the ileostomy reversed. I looked high and low for someone around here but could not find anyone. I ended up going to USC in CA. It took me over a year between the second surgery, therapy, and retesting before I got it reversed.

I was pretty good up until 2008, then things started slowly getting worse. My problem was I had obstructed defecation. So it really didn't fail, but my muscles and nerves were not working right. The surgeon told me he could put everything back anatomically right, but how I functioned was a different story.

Hopefully that clears things up.

What I forgot to comment on in my last email was about the doctor in Florida. After everything was said and done, I thought he was a little too anxious to do surgery on everybody, but it was too late then. My colon was still at the bottom of some landfill.

Let me know if I can clear anything else up for you. Do you think you will get the BCIR?

Take care

Elaine

Elaine, thanks for the input. No, I doubt I will ever set foot in a hospital again, despite dreaming of one day being reversed or having a more simple system like the BCIR in place. However, I suffered extreme incompetence based solely on financial issues. I was very well insured, and it was taken advantage of by the hospital and staff. My situation was one of malfeasance, misfeasance, nonfeasance, strict liability, and rape. (Rape--using a position of power and authority to take something from an unwilling victim). I was admitted to the hospital with a leg clot caused by a poorly administered annual colonoscopy. Despite pathology proving no C DIFF, a doctor prescribed vancomycin and metronidazole, both in my records as allergens. I refused the meds, and they were then put into a "solution" supposedly for nutrients and saline for dehydration, while hiding the fact that they were including the allergens. When I asked, I was lied to. I started with hemorrhagic rectal bleeding and severe diarrhea. When I inquired again about possible drug interactions, I was lied to, lied about, and had the real pathology report withheld from me. I was confined to the bed due to the vascular surgery (which took two surgeries because the first got screwed up) and could not just walk out of the hospital. I was screamed at for taking up an ICU bed without allowing another "surgical procedure". I was almost killed from the drugs, needing 14 blood transfusions, due to the allergens. I was told I had precancerous cells according to pathology reports (another lie, which I could not see until almost two years after the surgery), and I finally consented to surgery. I discovered the lies accidentally when an ICU nurse came in at 3AM on the 9th to "add the vanco which the pharmacist forgot to put into the nutrients". I removed the IV and asked for the lead nurse. That was 35 hours before my "scheduled" surgery. I told her I was refusing surgery. The next morning I was removed from ICU at 7AM and taken to pre-op, where I again stated NO SURGERY. I was dosed with Ativan to "calm me down". I was dosed THREE more times over the next 9 hours during which time there was NO DIARRHEA and NO BLEEDING, because the drugs had been stopped. My husband was not allowed to see me because I was in "pre-op", being told they had moved the surgery up. When the anesthesiologist came in, I tried to tell him NO SURGERY, but I was pretty damned stoned by that time, and the nurse told him I was just confused because they had given me something to calm me down, but they had signed paperwork for the surgery. I never saw the surgeon before and was knocked out without ANYONE listening to me holler NO SURGERY. He took my colon, but it was ONLY INFLAMMED from the allergens, then he took my right ovary saying he "thought he saw an occlusion" there was none, and he took my gall bladder because there was a TINY less than 2mm stone in it (that small they are NEVER surgically taken). He was looking for justification for his actions. The lawsuit was a fiasco, the hospital releasing corrupted data to my lawyers causing her computer system to crash. There is a 2-year maximum on malpractice, and doctors are extremely well protected, especially when they claim "standard of care". So I went outside the malpractice and filed civilly. If I win this case, there will then be criminal charges. Big HOO HAA, still ongoing. I don't really care about the outcome, I just want EVERYONE involved to be out of working in the medical profession. I don't believe I'll ever trust the medical profession again. I have told the courts that if I was standing on the threshold of the hospital having a heart attack, I would roll my ass into the street where at least I could see the truck coming at me and would understand the consequences of what would happen when it hit me. These things seem to take forever, but I'm very healthy except for the damage done to me by these doctors and this hospital, which was extensive as I have developed PTSD and don't ever go outside my house for ANYTHING other than my PCP in order to keep my medical supplies authorized. I will continue to get my personal experience out there to make people aware that hospitals are BUSINESSES FIRST, and when it settles out, I will publicly speak out to anyone that will listen.

So mainly I was asking for the data to wonder if I was missing out on a GOOD experience because of my inability to go out into public. After your experience, I must admit that I'm not missing anything. :-).

Peace

Nancy