I am 25 years old and was dignosed with Ulcerative colitis in Sept. 2008. I will not go into too much detail about what I have gone threw, but a basic over view is, I have tried many different medications including, Asacol, Azathyrprine (bad reaction to), remicade (no change), Humria (no change), methrotrexade (no change, may have caused flare up), and while on all of these medication I had been on prednisone. I have also tried low fat diets, and tried to illuminate certain foods from my diet, both with no success. The doctors have tried to take me off the predinsone, with all of these medications with no luck. I would almost be on off of them, and would get another flare up.
Many drs have now told me that I have run out of options, and the only way to get me off of the prednisone is to take out my colon. This would either entitle me to a bag the rest of my life or an internal bag. I will not know which for sure for at least month, when I finally meet with the surgeon and get him to answer my questions.
My question is....would my life be normal without my colon? What would the recovery be from the operation(s)? I have asked drs these questions and they give me vague answers. I would like to hear from someone that has experince with these operations, either personal, family, or a dr that has performed it and seen many patients go threw the recovery process.
A second question....is this the best option? Does anyone have any other suggestion of other ways to control UC without taking out the colon?
Here is another option which has worked for me....
How did your UC develop?
Did you first develop an IRRITABILITY to some type of food which gave you EXPLOSIVE DIAHREA for years before you started seeing blood and other UC symptoms?
Do you take Magnesium tablets? If not, Then you are deficient in it and is in desperate need of it for the nerves and muscles in your GI tract to work properly and to possibly STOP THE IMMUNE SYSTEM ATTACK of your colon.......Try the pills and foods high in Magnesium for 12 months or more before making a decision on removing your colon. EAT FOODS high in Magnesium like DECAF COFFEE, PEANUT BUTTER, CABBAGE, GARLIC, etc..........
besides the magnesium pills and foods ABOVE high in magnesium, I also take about 1grm to 1.5grm of Flush-type Niacin for lowering triglicerides and raising my HDL and have found that this Niacin along with the magnesium have virtually cured as far as I can tell since I am finally PAIN FREE. IF YOU DO TAKE THE NIACIN, THEN YOU WILL HAVE TO WALK 30 minutes/day to prevent diabetes and drink the DECAF COFFEE TO KEEP THE LIVER HEALTHY!
There was no food or anything that triggered my symptoms. I was having progressive symptoms that started one day. First, I was just going to the bathroom more frequently, didnt think anything of it, then started to go more and more often, and started to feel fatigue and weak. Finally, after about a month or two of this I sought "professional" help and went to urgent care. They did nothing for more, said I had a sinus infrection (which I might have had, too, at the time) and a UTI, gave me antibiotics and sent me on my way. Took the meds, and when I wasnt feeling better in a few days, I went to another urgent care facility and they gave me more antibioltics and decided to do a stool test. Of course, I had to do this at home, and while getting the sample, I saw blood for the first time in my bowel movements, so I called urgent care and explained to them what happened, and they said they could no longer help me to go to the ER. So I went to the ER immediately, and they told me they werent sure what was wrong but they thought it was UC, when I asked what that was he said "see a GI dr and if thats what it is, they will explain it to you" So, Monday morning I went to the GI and Tuesday they did a colonoscopy and confirmed it was UC. The doctor told me, as well as many doctors since, that nothing in my life caused the UC, that it is autoimmune and is not triggered by lifestyle. Although, at the time I was diganosed I was under a lot of stress. I had just moved to a new city, and I was trying to find a job. At my current job I was working 40-80 weeks to try and open a new store. Because of the UC I actually missed the grand opening of the store.
As far as trying magnesium, I have not. I am pretty sure that I have had blood work done and my Mg levels are good. I know once when I was in the hospital, they had me on a Mg IV drip, but have not taken it since. I did try Aloe juice once, it did not work. I have tried other diets, like I said, low fat, cutting out certain foods all together, high fiber, low fiber, bland, no dairy, lots of dairy, everything anyone can think of. Nothing really works. I have taken iron, calcium and vitamin D pills before, as well, that just triggered flare ups.
I was diagnosed with UC when I was 21. In my early days I was lucky that I didn't have too severe of symptoms. After 5 years it started getting worse. I was going through intense stress with my job, school, abusive husband and raising my son. I would end up in the hospital once a year dehydrated and requiring lots of treatment. This went on for another 4 years with each attack getting worse. I did not have a good GI doctor. He would not let me in to see him until it was too late with each attack and he did not keep up my scopes and stay on top of my disease. Back then there was only Asacol and prednisone.
In this last time in the hospital I felt an unbelievable pain. The nurse told me I needed to learn to deal with the pain and ignored me. In the morning they found me with almost no blood pressure and I was unconscious. My bowel had perforated. The entire colon was essentially tissue paper. I was rushed into surgery and had my entire large bowel removed and I received an ileostomy. My surgeon had heard about the J-Pouch surgery (this was 17 years ago) and called Mt. Sinai and talked to them to ensure he did what was necessary for me to be able to have the J-Pouch surgery down the road. I was in intensive care for a month due to the shock to my system. It took a long time to recover.
I had to wait a year to have my J-pouch built as they weren't sure if I had UC or Crohn's and if I stayed healthy for a year then they would do the surgery. I adapted well to the ileostomy although I did have a few embarassing accidents. After my J-pouch surgery I had another temporary ileostomy. After this surgery I bounced back quickly since I went in healthy and of course had no poisons in me. After 3 months they closed my ileostomy and I regained function.
It took a few months to get used to it and to try out different foods to manage my output. I took a lot of immodium but after 6 months I was doing pretty good and after a year doing great. It has been a joy being disease free. Yes I go to the washroom about 8 times a day but I have control and I know my body. I didn't have a choice and can't imagine how you must feel deciding. My son has UC now and had a couple of very severe attacks in the beginning. They used enemas, pentasa and prednisone to get it under control and then started Imuran. He has been in total remission for 2 years. He started to feel a bit of a flare starting and they upped his dose for a bit and he didn't get sick.
Here's what you need to decide with your doctors. What shape is your colon in? Are you at risk of megacolon or perforation? If you don't have the surgery how long will your colon last with the constant disease?
If it were me and I decided to have surgery I would prefer the J-pouch. You can have an active life either way but I was much happier once I had my pouch. Ask your doctor what he would do if you were his daughter.
Are you nuts???? Removing your colon? Yes, its having problems...but you don't go and get it ripped out. Some doctors...all they know.....is to push drugs or if that fails, then operate. HAVE YOU CONSIDER DIET AND EXERCISE??? That is the main issue. You body and life are out of balance, get it back by going back to nature. You can't stick a bunch of crap in your body and not expect your body to break down. Most doctors have been pimped out by the pharma company's. They push drugs because they are profitable. Hello! You think all doctors and pharma companys just wanna "HELP" people? Please, they are the highest paid professions in the country. Wake up. kl I bet they have never really asked you about your diet.....or how much you sit on your *** and watch the tv or computer screen. (that is letting your body rot) Anyways, run away from these doctors. Sorry if I'm blunt, but at least you know i'm not blowing smoke up your colon.
Yes, I have tried EVERY diet and excerise plan i can think of. Low-diet, high fiber, low fiber, non-dairy, bland, protein shakes, supplements (iron, calcium, vitiam D) . All of these either did nothing for me, or worsen my symptoms. I also joined a gym and got a trainer. This, also, did not help. I would be ok for awhile, but then it cause flare ups. I even told my trainer to do a low impact work out for me, so that it would not put as much stress on my body. This helped for awhile, until I got sick and then became as useless as everything else.
I have also taken every medication on the market for UC and either had a reaction to it, or had it have no effect on me.
I did not come to this conclusion lightly, and have been back and forth on it for almost a year now. I have talked to multiple doctors about this to see if there are any other options, and every one of them has said the same thing, there are no more options. I have also talked to a few people that have had the surgery and have been happier for doing it.
I was diagnosed with UC when I was 24. My symptoms were very similar to utilaman symptoms. My bowel movements were becoming more frequent, becoming very tired, losing appetite, and losing weight very fast. I was having difficulty going to the gym and work. Eventually the abdominal pain was so severe that I saw my family doctor and he said i have food poisoning. After about a month of "food poisoning" a co-worker recommended her GI doctor and from there it was determined that I had either UC or Crohn's. Supposedly, my large intestine has had the inflamation for at least five years prior to the symtoms but something (stress, food, environment) triggered it to start flaring up.
Anyways, I have tried many things as well. I never ate unhealthy before but now i try to watch what i eat, I exercise, take my meds but still have flare ups. I recently was discharged from the hospital after being there for a month. During that time the option of surgery came up since the pain was so bad and none of the meds that the dr were working. I almost said to go with the surgery because I could not handle the pain. However, the dr said that the surgery might not help my back pain (which is unknown if it is related to the UC).
I am currently taking prednisone, mezavant, vitamin d, calcium, iron, stool softners, senokot, as well as some pain killers for my back. I have taken remicade but had a very bad reaction after the 3rd infusion. I will be starting humira soon (anyone have any info on it?) I heard the magnesium is good and can help. I am also taking a blend of natural juice (aloe vera, slippery elm, etc.) but don't know if its working since its says it takes 6 months to see effects.
Surgery should be the absolute last option. That is what the surgeon told me. He said try every option before cutting the intestine out. Which I found odd for a surgeon to say. I;m sure in time I will need the surgery but i personally will try anything before that.
I have tried everything, and have been to about 3 or 4 GI drs, and been told by all of them, that I have fun out of options. I aloso tried vitamin d, calcium, iron, and aloe vera, all of which caused falre ups. One thing I did learn was, at one point I was taking so many meds that I think it was over stimulating my body and doing more harm than good. This sent me to the hospital, and while I was there, they took me off all of them except my asacol and predinose. After that I was in remission for about 4 months, and then got another flare. This was due to another medication that I took for a migrane and it all went down hill from there.
After this last hospitaliztion is when I decided to get the surgery. Because of the UC, I can not take even the simpliest of medications with out getting a flare up and ending up in the hospital. I have decided that the surgery out wieghs the cause of those effects.
I answered on another one of your posts about the humira, it did not work for me, as well as remicade, azathirprine (6-MP), and methrotrexade were not successful. I hope you have better luck.
I have had my J-Pouch for ten years now and don't regret it a bit. I was having trouble and was on predisone for four years before I made this decision. I too had a temporary ileostomy that I found hard to manage. After seven weeks they hooked everything back up inside and then the recovery was tough. If you decide to have the surgery DO NOT LET THEM FORCE YOU TO DRINK ORANGE JUICE. You will be more miserable than you are now. One thing that I have used since then is the herb acidophylus (found everywhere) It helps maintain the good bacteria in your colon. I believe my problem arose from taking medications for adult acne. If you have taken penicillin or any antibiotics around your flare up times then this may be your problem too. They kill bacteria wherever it might be and that includes the colon. I hope you feel better. God bless.
My daughter was 23 when she had her colon taken out and the doctor (who was amazing) was able to reattached so she does not have to wear a bag. Her surgery was done microscopically and took about 8 hrs but she only has three small scars from the whole procedure. Her colon was trashed from just a few years of being diagnosed with it. She is doin much better but still needs to watch what she eats. Being young is difficult and not being able to eat sometimes food that is not good for you and it is even worse for her. But all in all, she is much better. She doesnt have the constant pain that she was in before, Hope this helps!
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