Ulcerative Colitis Tips


Ulcerative Colitis Tips PLUS iHaveUC Newsletter




Urgent: Need Advice on Deciding J Pouch Surgery!

Current Colitis Symptoms:

Loose stools, diarreah sometimes, urgency, frequent bm, sometimes with bleeding.

Hi,
My name is Julie.
I’m 34 years old.
I’m happily married and a mother of two bright children.
I was diagnosed with uc 7years ago.

I live in sunny OC California.
I used to love meeting friends, having good foods, and just hanging out. It’s hard to do it anymore, b/c of uc is controlling my body. I’ve been also suffering with other symtoms lately, stay home most of the time.

Julie’s Story

Hi,
I’ve been visiting this site for a while. It’s my first time posting, I would deeply appreciate any advices, opinions, and etc. I’m thinking about getting j pouch surgery. I’m meeting with a surgeon(Dr Ng in OC) in two weeks.

Just let you know where I am.. it’s been 7yrs since I was diagnosed with ulcerative colitis. First few years I was doing good, then past 3 years all the medication(including all the biologics) stopped working. I’ve been trying to control symtoms with SCD diet and supplements.(currently on Asacol HD) It’s somewhat working, but still have 6-8 bm a day, sometimes more or less. Mostly loose, sometimes somewhat solid, depends on what I’ve been eating. Some urgency, sometimes with bleeding.

It seems enough already to put my life on hold, but I’ve been suffering with a constant cough past two years as well, it started when the uncontrollable flares started and caused me to lose a lot of weight. It starts during the cold season and stays 6 months, this year the coughs began in July. Doctors can’t figure out why.

Also I’m having lots of body aches here and there. My knee and ankle feel extremely weak, sometimes it’s hard to get up and use the stairs. I feel sick and weak most of the time, it’s very hard to go on with my life.

Lastly this concern is for ladies.. I’ve been having UTI several times over the summer, in June and July. Got better after antibiotics, but still feels uncomfortable time to time. Never had UTI before, even when I was in worse condition.

So my questions are:

1. How serious was your condition before you decide to do surgery? (symptoms, number of bowel movements, etc) I read lots of post surgery stories and seems like most of them are having 6-8 bm, similar to where I am currently. I’m sure it’s very different in condition wise.

2. Did you have any of these symtoms(body aches, coughs, UTI, etc) before surgery? Were they gone after the surgery? Are you feeling healthy and happy with j pouch? Can you carry on with your daily life?

I’m so sorry for making it so long.
I’m a mother of two and need to get healthy. I don’t think I can go on with feeling sick all the time. My life seems like it’s on hold. Please help me.. any input would be appreciated.
Thank you so much for being patient and reading my story.

Medications So Far:

Asacol HD
6mp
Uceris
Remicade
Humira
Entyvio
Prednison

written by Julie S

submitted in the colitis venting area




10 Responses to Urgent: Need Advice on Deciding J Pouch Surgery!

  1. Dan H September 12, 2016 at 2:40 pm #

    I had jPouch Surgery a little over a year ago. My bathroom trips are at around 6-8 a day but my overall health has gotten so much better. Before I had the procedures, I lost atleast a year and a half of my life because I was too tired, sick, and scared to do anything. I tried all the medicines and nothing worked for me. I went through the 2 Stage Method and now I finally ave my life back. I am able to do almost anything i could before getting sick. I wish I would have done it earlier. It is a long healing process but to me it was definitly worth it.

    I wish you the best in your decision and I Hhpe you feel better soon. If you have any questions, Let me know.

    Dan

  2. Paul Willoughby September 12, 2016 at 3:37 pm #

    I let my UC drag on far too long before going to surgery. By the time they took it out, they had to remove 19 swollen lymph nodes. I didn’t realize how much it was dragging me down until I had the surgery and then discovered how much better I felt. Having a J-pouch is not all butterflies and unicorns but it sure beats UC and getting colon cancer. I do whatever I want and eat almost anything I want. I just got back from a weekend long karate training camp.

  3. leona September 12, 2016 at 5:25 pm #

    Hi Julie,
    I know what you are going through. I was there! Please read about MAP infection and treatment with antibiotics. I consulted dr Borody and he saved my life. He believes that UC and and Chrons are caused by bacteria that goes dormant for a long period of time. He put me on antibiotics : Rifaxamin and metronidazole that I take for 2 years I feel great . No symptoms. After 1 year I will start fecal transplant.
    He patentet antibiotic conceal to treat UC and chrons . DR. chamberlin treats by this protocol as well. Before going for a surgery contact him, he is here in US.

    There is vaccine that soon will be available. I hope for it. Just do research, don’t rush.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3031217/?tool=pmcentrez

    http://crohnsmapvaccine.com/faq/will-the-vaccine-help-ulcerative-colitis/

    Good luck to you!!!

  4. Brookie G
    Brooke Gramling September 12, 2016 at 6:50 pm #

    Hi Julie! I’m a female, 33, with one daughter and trying for another kid now. I had UC for about 20 plus years. I had my colon removed 6 months ago ( with the the exception of a few inches towards the rectum). It was the BEST decision of my life. I don’t have the j pouch quite yet. My gastro advised that since I want another kid, they didn’t want to take the last bit of colon out as it can lead to scar tissue in the pelvic area (or something like that) and could make your chances of conceiving more difficult, definitely still possible but more difficult. After my next child, I plan to have the rest of it removed and J pouch surgery. (right now I have a bag) I waited way too long for the initial surgery. I wish I would have done it years ago. I was on and off prednisone for years – it made my bones brittle so I couldn’t have that anymore, the biologics stopped working, asacol stopped working. I was bleeding, 15-20 bathroom trips and so lethargic, I had to take a leave of absence from work. I was so weak, I couldn’t get my daughter ready for daycare and fear having accidents on the job ( I travel around and visit people in their homes – not good). I messaged my gastro and told him I was done with this taking over my life. I was always sick too – it seems like I couldn’t go more than 3 weeks with out catching a cold. I have not had a cold in 6 months. My brother (35) had UC and has a j pouch. He had his colon out 20 years ago. I’m so jealous! I feel like I would have had such a healthier life if I went that route! Please let me know if you have any questions. Good Luck!

  5. Peter September 12, 2016 at 11:57 pm #

    Hi,

    So I had the chop a few years ago. Glad I did it. Colon was rooted and wasn’t going to get better. Shitting blood and wasting away. On all the usual nasty meds.

    After the chop only taking loperimide (over the counter med) but struggle to sleep as either poop meself when asleep or wake up to go poop. Like every 2 hours. Like every night. Get butt burn if not careful.

    I’m happier with this than having UC and waiting for it turn to cancer or toxic megacolon or sommit. Apart from not being able to sleep (or work full time) I’m much healthier now.

    Good luck to you,

    Peter

  6. Umm September 20, 2016 at 6:58 pm #

    Find a farmshare near you and start eating all raw and organic meat and raw milk, raw honey, etc from the farm.

    Hire someone to make the food you need for you like bone broth, and other foods like scd diet foods. You can’t make the food yourself, you will be too tired, you can’t wash the dishes either you need to hire someone to come in and do it.

    Read the research that shows large percentage of people who get jpouch STILL have same symptoms after they get their colon removed, they just now have to live with jpouch and being a slave to western doctors the rest of their life.

    If you can scrounge the money get a fecal transplant. If you can’t scrounge the money to go to australia or somewhere like that to get it done, go to power of poop and contact like every place on the list and ask them how you could do it yourself, or hire a local enema clinic to work with your fecal donors and you to get it done cheaper than going to australia or somewhere like that to get it done.

    Don’t take prednisone/prednisolone ever, even if you are going to die. It gave me diabetes from only taking it less than 2 months, plus the eye damage side effects so I am going blind now.

    You have to have someone who loves you on your cell phone or near you at ALL TIMES to keep you from eating damaging foods like breads/grains/ice cream/sugars of any kind/tap water/etc. You can’t resist by yourself you will give in and in a few hours go back to pains of death again after your 5 minutes of “I don’t give a shit” and giving in and eating the bad stuff.

    Internal damage to skin takes time to heal, cheating makes y ou start back at day one again, you have to keep the diet and herbal treatments like turmeric, slippery elm bark, licorice root, etc going every day and have it prepared by SOMEONE ELSE so it is always ready for you to take it morning and night. you will NOT be able to prepare the food and herbs by yourself, don’t lie to yourself you are too weak and tired to work, you need someone else as your worker who will save your life in the end, since you are too damaged to do anything anymore.

    If it comes down to it, pay off someone to get a positive test result for C. Diff, that will allow you to get FMT more easily, then get their antibiotics but do NOT take them, but tell the doctor you did take them, then get a fake retest positive somewhere again, after that you can get in line for FMT at a clinic. If you don’t want to go this route and don’t have c Diff then you HAVE TO do it yourself through power of poop and private donors you pay cash to work with you, maybe in connection with a naturopath or someone like that who has legal power when it is needed to get things done for you.

  7. Uma September 21, 2016 at 7:27 am #

    Have you tried Imuran.works well for some people.

  8. Scott September 23, 2016 at 3:12 pm #

    Hi Julie – my story is much the same as yours; nothing seems to work . Diagnosed about four years ago (58 yr old male, pretty strict vegetarian for over 20 years, never had to do so much as an aspirin before the age of 50, was athletic); have really been suffering the last three and feel like I’m not even the same person anymore. have been on all of the mesalimines (including enimas) Uceris, 6-MP, Humira, finally Remicade for the past five months. Some showed promise at first but then fizzled out, just like the Remicade is doing now. Been on and off prednisone. Tried treating it with more alternative herbal therapies than I can count. Try different diets. Been to three different G.I. specialist including one of the top doctors in New York City. Had a very minor asthmatic condition when I was originally diagnosed that has now gotten worse. Don’t even want to go into the symptoms – you know them all, they are horrible and constant. Oh, and then there are the side effects of the drugs; that’s a long list too. I’ve decided I’ve had enough; can’t take it anymore. I’m going to see my doctor in a week and tell him I’m finally ready for JPEG surgery. I actually feel bad for him; he’s tried really hard to successfully treat me but without any luck. But as he said years ago, ‘you can have surgery and you won’t have colitis anymore’ . I know there may be complications, and I’ll never be 100% again, but if I can be 50% of what I was, I’ll be very happy. So I’m going for it and hopefully taking my life back!

  9. Lewis G
    moneyball September 28, 2016 at 10:24 am #

    Julie,

    I had my final of 3 surgeries on the 5th of August, 2016, to complete my J-Pouch. So its only been a couple of months with a J-Pouch for me, but will give you my insight anyhow on my journey thus far:

    -Before surgery I was going so much that I cannot even count how many times I went. Over 30 in a 24hr period though and almost all blood, nothing formed whatsoever. I ended up having emergency surgery to have my colon removed.

    -I had really bad body aches in my knees and Achilles tendon, as well as my lower back. These pains are gone now, but I have heard that some people can still get those symptoms after surgery.

    -I felt amazing after surgery as I was so sick. The ileostomy bag didn’t bother me at all while I had it, but am now very happy to have it gone. I had it for one year. I am healthy and happy with my J-Pouch and can do basically everything I could before I ever got sick already, only a couple months since the final surgery. I have about 6 bowel movements a day and can hold it as long as I want.

    Having said that about my case, I personally feel that you could possibly still get yourself turned around with diet and or medication. It just sounds like your symptoms, although bad, can still possibly be turned around and save your colon.

    I wish you all the best. You can reach me anytime at jeremylewis@determinedchristian.com if you have any other questions or just want to vent, etc.

    (I didn’t read anybody else’s comments, so I apologise for any repeated info..)

  10. Jo October 1, 2016 at 12:20 am #

    Hi Julie,
    I had my colon removed January 2016 after only fighting with it for five years. I tried lots of meds, all of the medication failed. I also went on the SCD diet for over a year, and my colon health did not improve. I’ve tried supplements, massage, etc. I did not try fecal transplant, because my doctors kept telling me it would not work . Unfortunately after five years of using prednisone to stop the bleeding (I now have severe osteoporosis and joint pain osteoporosis and joint pain) 90 days in the hospital last two years, and being extremely weak and ill, my doctors told me there was nothing more they could do for me, and it was time to take it out. My older brother already had his colon removed due to cancer, and other women on the maternal side of my family also have digestive problems, including a great aunt who had her colon removed. I opted for J pouch surgery. But at this point have only completed the first surgery. I am still weak and have not completely recovered from being so sick for so long. Although I have the option to move forward and go for the J pouch, I don’t think my body can handle the next two surgeries. As much as I don’t like being bagged, my health has improved, I can leave the house, socialize, and have a life again. Only you will know when you’re absolutely ready to take this step, please realize it is quite drastic but it may save your life. If you haven’t gone for a second opinion, or tried everything in your power to get yourself as healthy as possible, please think very carefully before you choose surgery. My thoughts are with you on this journey.

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