Should I Opt For Surgery?



Pranav Ghandi pictureIntroduction:

I’m a 27 years old male from India suffering from ulcerative colitis since past 5 years . I was diagnosed with severe pancolits in Decemeber 2008.

Some more about me:

I love traveling and eating good food.

Symptoms:

I have about 10 bowel movements per day with no blood. I have lost a lot of weight in last 5 years. I feel fatigued and have hardly get a good night sleep due to motions.

Should I Opt For Surgery?

Hi fellow UC`ers,

I am 27 year old male from India suffering from pancolitis since past 5 years.
I was diagnosed with UC right before I was about to leave for the US for my MBA. I did not realize the how bad my situation was until my second month in the US. Being in college and away from my family I was not take my meds properly and use to drink excessively even though I use to visit the the loo about 10 times a day. My doctor prescribed me predinsone to get inflammation under control. Unaware of its side effects I took it regularly for about 1 years. I regret my two months spent abroad in Germany where I would just pop predmets everyday just so that I could party.Needless to say that I developed AVN in both thighs and had to undergo core decompression operation last year.

I have been on asacol , predinsone and azoran but nothing seems to be working for me. I was taken off of azathioprine because it resulted in acute pancreatitis. I have looked into SCD diet but being an Indian I think it is very difficult to follow it. My doctors have suggested me remicade but I am not to keen on it due to side effects. I have tried various alternative medicines but nothing seems to be working for me. My question is what exactly happens after surgery?

I am currently having 8-10 stools a day with no blood. People say that they still have 6 bowel movments a day after surgery. Is it worth it? Do you still have urgencies or you can control your bowel movements?

Will I be able to gain weight after surgery? I have lost almost 20 kgs in last 5 years?

What are the diet restrictions after surgery?

I am bit of drinker…Will I be able to drink moderatly after a year or so…?

Is there any other alternative you guys can suggest?

Regards

written by Pranav

submitted in the colitis venting area


13 Responses to Should I Opt For Surgery?

  1. PeterNZ July 31, 2013 at 1:09 pm #

    Dude,
    I’d live with the 10 ploops a day. Weight loss might be unrelated to colitis. Try switching to red wine only.
    Cheers,

    Peter

  2. Andy July 31, 2013 at 7:24 pm #

    Haha ploops.

    Weight is bound to be colitis, esp. with Pan-colitis, in my last flare up I lost 15kgs.

    SCD didn’t work for me either, I really think the right diet depends on the type of bacterial imbalance in the gut.

    If you are going to try alternative therapies you absolutely need to be consistent, the effect is smaller than conventional medicine in most cases, although several therapies can have a compound effect.

    I would suggest:

    – Strong probiotic, fermented food and glutamine, to help build intestinal barrier.
    – Prebiotics fibers – I actually think this can be more important than probiotics. But some people react badly to certain prebiotics(checkout FODMAP). Three things to try: Resistant Starch(corn or potato), Inulin, Beta-glucan(oat milk), Larch arbinoglactan. So start slowly, some of these are very cheap.
    – Zinc Supplement, this is very important if you drink Alcohol. Alcohol depletes Zinc levels in the body, zinc is a key component in the intestinal barrier. Don’t go crazy though 15-25mg per day is probably enough.
    – Eneteric coated bromalain, reduces the activity of bad bacteria.
    – Vitamin D
    – Olive Oil, a few table spoons per day can help regulate gut bacteria.

    Try that for a month or two(provided you feel well), then think about some more serious options:

    – FMT, turd transfers, Fecal transplants, fecal bacteriotherapy etc. It seems to be fairly available in the US now. This can reblance the gut bacteria.
    – Helminths, helmanithic therapy, TSO, human whipworm etc, this can down regulate the immune system.

    Good luck!

    Andy

  3. Hammad
    hammad July 31, 2013 at 8:08 pm #

    hay Pranav ,
    sorry to hear you are having such a rough time buddy. The first thing i would suggest is to cut down on the alcohol buddy, thats probably gonna make the disease worse. I think occasional drinking should be fine but heavy drinking everyday will be harmful. Another thing is that a lot of time the medication dont seem to work with alcohol. I myself am on Azathioprine right now…just started a couple weeks ago. I am hoping it works for me and put me in a long term remission. I also tried a lot of alternatives like homeopathy and chinese herbs and stuff ..not much positive results. I was so desperate that every time i saw a new alternative i would order it. About the weight loss its very common with uc but i think u should have gained it back being on prednisone. The surgery is a big one to be honest..i have personally never met anyone who just walked in and asked to get his colon out, all the surgeries that i have read about have took place in an emergency situations.
    And about the diet try to be on plain foods like boiled rice and lentils thats the most famous indian dish. Try it out and see if u feel a difference in your bowl habits. Best of luck !!

  4. jimmie August 1, 2013 at 9:01 am #

    Hi pranav
    I have been dealing with uc 30yrs now.I have been blessed
    Compared to some other stories I read,but it has been no
    Fun at all.I was started off on sulfasalazine for proably first
    20 yrs.used predisone a few times during flares.I’m now on colazal.I still
    Have many loose stools a day,but not to much urgency or accidents.no
    Blood.very fatigued all time.I have a colonoscopy every year for last
    Ten years because they say after eight years with uc great risk for
    Colon cancer.they have always came back normal except last year biopsies
    Came back abnormal.my Dr. Wanted to start me on remicade.after researching
    The med.I declined risk seemed to big for me.side affects are chance of it giving you
    Cancer,and it knocks immune system out.I’m a nurse and have grandchildren
    I don’t want to die of a cold or something.Dr also wanted to try imuran
    But it has same side effects.so I didn’t start that either.plus I have read on this
    Site that it dosn’t help most people.my Dr.wasn’t very happy with my decision
    But I have to do what I feel is best for me.so we scheduled another
    Colonoscopy in six months witch I just had.waiting on lab results.Dr.said
    My inflammation looked a little better but if my biopsies came back
    Abnormal again he was sending me to see a surgeon because the next step
    Would be cancer.Back in 1983 when I was diagnosed I didn’t have websites or know of any groups for uc.Dr.always said diet didn’t have anything to do with the disease.so I have been researching people that have had surgery.most all say they.feel so much better and don’t regret having the surgery.I would at times quit taking my meds. When I wasnt in a flare,but it wouldn’t be long until gradually it was full blown again,and I would have to get on meds.
    Again.Here are things if I had know about in the beginning I would have done differently
    If I had know about.I would of stayed on meds. Even when I was feeling better.I would of followed a good diet like scd diet.would of gotten on some good probiotics.But even if I did all that I still might be facing the same situation after thirty years.I wish our GI Dr.s
    Would give.us better info on our disease,but I guess they only study meds.and surgery.I wish you all the best!I encourage you to read all the different peoples stories on this site even the surgeries.being only five years in maybe some of the things would help you,but I encourage you to stay on your meds even when your not in a flare.you have to keep that infammation under control so it dosnt turn to cancer.Good luck!God bless!

  5. colney.k August 2, 2013 at 1:44 am #

    Hi Pranav.surgery in emergency ya!i agree wt hammad but in my case il b going for surgery on 7th aug in mumbai,in my case my journey begin since i was 13 daignose at d age 16,now m 34 and have tried remicade,and pred,azzoran…..if you are vegetarian it wont be easy to gain weight,i m from north east india,we eat all kinds of non veg:-)but ya i stick to fish and chicken.you hv to watch your diet and see for yourself when you eat what food your trigger. Why dont you give up alchohol fo few days and see how the meds works if you cant do that much then soon it vl gt worst,veg is secondary protien n milk is not dat gud for colitis you cn hv yogurt not the flavoured one probably probiotic ones.so you hv to watch ur diet and gv way for the meds to work.its only 10 times ithink you should see gud doc and wait.

    • Pradeep August 10, 2013 at 3:37 am #

      Hey Colney

      Food available in the hospital should be of least concern to you now :P
      Anyways Good luck with your surgery & please share your experience after surgery.

      TC :)

  6. Pranav Ghandi
    Pranav August 4, 2013 at 2:57 pm #

    The thing is I have been constantly losing weight…my waist shrinks by a inch every 6 months. I have talked to many doctors….most of them have agreed surgery is the way to go….They have given me the option of remicade but I dont think I wanna inject myself with a new drug.
    I have cut down on my drinking almost completely and try to eat the right diet. Its been 5 years with severe pancolitis and although I am nowhere near any emergency situation.. just getting frustrated with the disease. Although 10 times a day seems OK to some extent but I am always worried about pooping my pants whenever I go out. I have scheduled a meeting with a surgeon next week and take a look at options.

    Coloney K….Which hospital are you having surgery in mumbai and which doctor?

    • colney.k August 7, 2013 at 8:51 am #

      My surgery is cancelled as ihv fever n headache hopefully friday 9th aug.im in seven hills hospital,my GI is Dr Sanjeev Khanna since 2004 dec, he suggest liproscopic surgeon Dr Mohan Koppikar you can search him in google.i choose this hospital as its clean and the service unfortunately its veg. Only hospital i hv to pay for non veg. But i guess aftr surgery initialy il hv liquid diet so its ok for now:-)the surgeon and my GI is not from this hospital but they do come but ya ihv to pay bit more as it is u know how the hospital staff n hygiene is concern.

  7. Pradeep August 10, 2013 at 3:32 am #

    Hi Pranav

    I am from mumbai too. Was diagnosed with extensive colitis in september 2012. Got into early remission because of steriods. Relapsed in dec,jan & now in august. The reason for relapse can be attributed to outside food.I have few questions for you.

    1.Did u ever got into remission? If yes, then duration of remission.
    2.Which doctor is treating u in mumbai? (mine is devendra desai from hinduja)

    My current medication is
    Mesacol 1.2 OD- 3 times a day
    Mesacol suppositories- twice a day

    I am also taking VSL 3 probiotics since dec & curd with turmeric.
    I m vegetarian & can eat anything which is cooked at home. Cant tolerate spicy food.

    I hope if any cure comes by soon. Waiting for results of Pfizer study of stem cell therapy for treating UC(possible cure).

  8. colney.k August 10, 2013 at 7:37 am #

    Hi Pranav, my surgery is cancel due to fever its 100. F but as its removing of colon ty r careful.and mine isnot emergency case and surgeon are happier to operatewhn not in emergency but m colitis bn wt me fo 20yrs n i m realy tired of this disease n whn i gt relapse in 2005,2009, 2012 was vry serious.if stem cell,facael transplant works for u guys gud luck.as fo me ihv chosen rollin without my colon:-)cant wait anymore this relapse been 3 months m game fo surgery,im quite fit otherwise ihvnt lost much weight this time.hope to gt admitted tomorrow n dat m fever goes n gt m surgery soon this time it vl b at critic care, juhu,sm doctor

  9. colney.k August 10, 2013 at 7:39 am #

    Hi Pradeep.is mesacol doesnot mk u lose hair?i lost alot so m doc change to vegaz OD

    • Pradeep August 14, 2013 at 5:05 am #

      Hi Coloney

      I havent lost any hair because of taking mesacol OD. Vegaz & mesacol has same contents.

  10. Nubia August 13, 2013 at 10:24 am #

    No alcohol, at least until you feel better. Its really not worth it. Good luck.

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