Bad Experiences and Difficult Decisions

I am 51 years old. I was diagnosed with UC in 2009, but I had it for a year before that. I had an appendix operation that I started all the symptoms of UC right after and never recovered. I have two adult children and a 12-year-old and I am married. I was born in Canada (Manitoba) and moved to Minnesota when I was 35.

Some more about Wendy:

I enjoy movies, reading, hiking, camping, cooking and being home. Snug and safe in a warm home during a snowstorm is nice. I love traveling but the trips are usually confined to Canada and the USA. I have traveled to Europe and Africa when younger. Once to Amsterdam more recently.

Symptoms As of Late:

Currently I am recovering from the worst flare I’ve had yet. When I had that flare I was going to the washroom about 100 times per day. Blood wasn’t a lot before I was admitted to the hospital. I still, even on prednisone and mesalamine have diarrhea if I eat too much or the wrong thing.

Wendy’s Story

Since my laptop broke I haven’t been able to write on here and doing it on my phone is difficult to navigate and type. This is the best place for me to communicate my experiences with UC. You would think it would be doctors or family, but no.

I was very gradually becoming worse in my UC symptoms for a while. It took months of gradual increases in symptoms before I decided that I was actually very sick and should see a doctor. I don’t always just go to the doctor because I can have a bad reaction and it will go away. After I started getting fever, sweating and chills, nausea and headache I decided I would go to the ER. The ER gave me anti-nausea medication and a shot in my IV (that you shouldn’t give someone with UC) for pain. I was sent home and told I had an appointment with the gastroenterologist on the 14th of March. It was the 14th of February.

I went home and proceeded to become increasingly ill. I had to crawl to the washroom. I could only lie on the couch or in bed sweating or freezing. I barely ate or drank. I called the hospital four times telling them what was going on. The people I talked to said my appointment was the 14th of February and there were no sooner openings.

After a week and a half all I could do was cry. My husband called and talked to the hospital. He said I was delirious (which I wasn’t). The hospital called me back and talked to me. They said I should take an ambulance in. I said “no.” My husband could drive me.

I was hospitalized for a week. It was so bad and I was so I’ll I wanted to die.

I have decided to remove my colon and I am seeing a great surgeon at Mayo Clinic on the 30th of April 2019. I am more afraid of doing this than anything in my life. I am so scared. I feel like there is some simple solution and I am foolish for making this decision and I will regret it but I do know that I never want to be sick like this again. I do not want drugs that also give me cancer and lupus and loss of my body parts due to side effects. One person asked me when I had rises symptoms (around 2010-2011 if I wanted to not get better. That brings me down so much. People don’t say that on here. That is why I am writing this. It is a good community where people understand.

Medications:

I have tried most drugs but not Humira or Remicade. None of them work.

written by Wendy

submitted in the colitis venting area






27 Responses to Bad Experiences and Difficult Decisions

  1. Adam
    Adam May 9, 2019 at 12:49 am #

    Hi Wendy,

    Thank you so much for sharing an update. Wow, it has been 7 years since you wrote in and when I saw your profile picture I remembered….the girl from Canada…..Manitoba none the less:)

    Wow, for sure this is tuff times you are going through, and I apologize as I messaged you privately for the long delay in getting your story posted. I had just left for several weeks without my home computer when you submitted your story.

    If you can, it would be great to hear how you are doing. Maybe some things are moving forward in a direction that you are more comfortable with now.

    Whatever the case, thank you so much for sharing how you are, and on behalf of other folks here, it is great to see your picture and we’re with you during these hard times.

    Best and warm regards,
    adam

    • Wendy
      Wendy Hammond May 9, 2019 at 7:53 am #

      Thanks! My phone is my only mode of replying. Sorry for the typos! I hope tobget a laptop next year. I will post when I get the operation. I will wait until I am not in too much pain so it isn’t too negative! Thanks for your response.

  2. Mrs. H May 9, 2019 at 3:30 am #

    Wendy,
    I’m so glad that you feel comfortable sharing with us. By now you’ve had your surgery and I hope it went well. If you chose the j-pouch option, then you likely have returned to almost “normal”? If you have am ostomy, them things are better, but different. Either way, one thing is for sure, you’re not going as much.

    My husband has UC, with the most characteristics of crohn’s I’ve ever seen. He has good days and not so great ones. Enough about him though.

    The real question is, how are you?

    Mrs. H

  3. Wendy
    Wendy Hammond May 9, 2019 at 7:51 am #

    Thanks for the encouragement. I am scheduled to have the ooeration on thev15th of July (in a month) at Mayo Clinic in Rochester MN. I am ok now. The symptoms have settled a lot. I have had blood in my stool twice since being released from the hospital at Essentia in Fargo ND. I went for a consultation with Dr. Pemberton (I think that is his name) on the 6th of May. I will post hiw the operation goes. I think it will be in two stages. Getting a bag and preparing for j-pouch in one, then connectingvthe small intestine to the j-pouch and closing the ostomy hole in another operation with a three month recovery between operations. I hioe your husband is doing ok with his Crones/Colitis. I don’t know what Crones is like. Best wishes.

  4. Susan B
    Susan Bogatin May 9, 2019 at 3:31 pm #

    Wendy—I went through exactly the same as you and decided to get an ostomy. I chose not to get the j-pouch, but it’s a personal decision. My ileostomy is great and I have my whole life back. I’m healthier than I’ve ever been. I wish the same for you.

    • Jo May 11, 2019 at 12:12 am #

      Hi Susan … long time since we spoke! Wendy I had pan colitis, total of 90 days in the hospital, tried every drug and SCD. The steroids and possibly lack of dairy( and other high calcium content foods) gave me osteoporosis, did some tendon damage, hair loss, low energy etc. After 5 yrs of many doctors, hospital ERs , etc I had my colon removed and was going to go through with the second surgery for a J Pouch. I never went through with the pouch because was so ill. They told me to get stronger before the next surgery ( I could barely walk). Well, two years later I took a 4 week trip to Cypress and Italy where we averaged 8 miles of walking per day. My hair came back , I am back to a normal weight, and so far I have not had the j pouch surgery. My body is working fine
      Looking back to the beginning of my illness I would have looked for a better Dr. sooner, tried the SCD right away, sought help before my flares were out of control instead of crawling to the bathroom…. I was stupidly trying tough it out at home …. big mistake. Whatever you decide to do fully commit to it. Best wishes and best of health to you

      • Wendy
        Wendy Hammond May 11, 2019 at 6:47 am #

        Thanks so much. It is so good to hear you are healthy because I tend to do the aame thing – tough it out. Ot is so horrible making this decision. I just want the suffering to be over. I didn’t try as many drugs as you nor was I as sick as you for as long but I would not be able to endure it (or more likely not willing). I am so glad you are healthy. I hope I end up that way. I have read many things saying getting your colon removed is the best thing to do. Thanks for your reply. I feel strengthened by reading it.

    • Wendy
      Wendy Hammond May 28, 2019 at 3:11 pm #

      Thank you for telling me this. It is good to hear about someone who is healthy after choosing surgery. I am still going for the j-pouch even though I have heard horrible things about it. I just want to try to poop normally! Even though it isn’t normal I still want to try.

  5. George May 9, 2019 at 4:02 pm #

    Hi Wendy,

    I’m sorry to hear you are going through a awful flare. I know it is scary, but have you tried any biologics. They are relatively safe medications.

    George

  6. Denice Yeagin May 10, 2019 at 7:11 am #

    Thank you so much for sharing your story! So thankful as I am refusing all meds except the meslamine as well. I don’t feel so alone after reading your story. Thanks again and prayers for your surgery and recovery.

    • Wendy
      Wendy Hammond May 28, 2019 at 3:08 pm #

      Thanks! I can’t bring myself to take the medicines. I want to and then when it comes down to it I can’t. I tried about five different kinds. I haven’t tried Humera or remicade but I don’t want to go there. I am not sure on the surgery route either but at this pointbit seems like it is the lesser of the two evils.

  7. Lyd May 10, 2019 at 7:12 am #

    I feel for you Wendy. I understand what you’re going through and making a decision about medication is tough as they all have terrible side effects.

    A bit about me……..
    I also live in Manitoba (lived in Winnipeg) and now live in Northern Manitoba. The health care system is horrible in Manitoba so you are in better hands down in the states. But, I was very lucky to get a couple of great doctors.
    I was diagnosed with UC in 2014 and after my last colonoscopy a few months ago I was diagnosed with Crohns-Colitis. I’m like you I hate going on drugs with a passion. But…….I’m currently on Entocort (steroid) due to horrible inflamation which effecting my life and now I have to make the decision about going on Imuran or biological so I can go into remission. The dr was upfront about the risk of blood cancer from Imuran which has no cure. I was told a couple of times that I have to way the benefits vs the risks by a couple of Dr’s I see.

    This is just me…..it seems that you’re still on the fence about getting the procedure done. Before you go and see the surgeon and write down a ton of questions to ask him/her and bring someone with you to also listen to the answers.

    You came to a great place for support. Hugs from a fellow Winnipeger and I wish I could send you a Jeannie’s cake or Kub’s rye bread to comfort you.

  8. Paul S
    Paul May 10, 2019 at 7:51 am #

    Wendy,

    So sorry to hear of your experience. Deciding between surgery and dangerous medications is a difficult and personal decision. I have dealt with UC for over 20 years and have spent 50 days hospitalized for 3 serious flares, 2 of which turned into C-Diff infections. Very nasty stuff. I had some early success with Imuran, but that stopped working for me about 3 years ago. I am allergic to sulfa drugs so Asulfadine (SP?) and other sulfa based drugs make me more ill. After the Imuran failed I I made the decision to try Entyvio, but the insurance company forced me to try Humira first. (I am in the US) I am one of the lucky ones, the Humira worked for me almost immediately and I have been successfully using it for 3 years now. I am very conscious about potential side effects, but chose that risk over the surgery risk. Again, a personal choice. I will also say that I have a fabulous gastro who knows my case well and in his words, is now more of a coach who helps guide my decisions. I would tell you that having him is the most crucial part of my being able to live a normal life. I hope you are comfortable with your gastro, and seek a second opinion if you’re not.

    Be well,

    Paul

    • Wendy
      Wendy Hammond May 11, 2019 at 6:55 am #

      Thanks Lyd.. It is a scary decision to make. It is life altering to remove my colon. I think I am going to get the surgery. I do not want a cocktail of druvs in my system. I don’t know what the side affects will be long term and I never ever want a flare again. My doctor (surgeon) is the best in the world at Mayo Clinic so if I am going to do this now is the time. They are upfrint describing the bad things that can happen to me with the surgery and the j pouch only lasts 20 years and they have to make it a bag again I heard but I am willing to try it. I can’t tell if my bones ache all the time from UC or arthritis. Anyway, I think for me this is a risk I am willing to take. I have heard of many people living long good lives on drugs as well. Thanks for the reply. Best of lives wished for you.

    • Wendy
      Wendy Hammond May 11, 2019 at 7:04 am #

      Paul, I am replyinh on my phone and I don’t know if lyd got my reply or you got Lyd’s reply. Sorry. I can’t figure it out. Thanks for the reply. I would be so frustrated trying different drugs. I have tried about five different ones and was allergic to them all. My sight feels like it was damaged just from a couple of doses of one of the drugs. That is scary. I just don’t want to deal with it. I know I will have to deal with my surgeries the rest of my life as well, but so be it. I do not want extended hospital stays. The last flare made me so I’ll I wished I could die. I watched a youtube video about a man who had surgery like I am intending and after connecting the plumbing to the j pouch he had a blockage. He was in so much pain he started crying on the youtube video remembering it. So I understand it is no joke. It could be the best decision to stay on drugs as well. I am just willing to risk it so far. Haven’t done it yet. 16th of July is the operation and 15th is the consult. I hope the best for you.

  9. Mutsumi May 13, 2019 at 1:37 pm #

    Wendy I feel for you. I understand what you went though as I had a similar flare ups experience, maybe not as bad, back in 2009. I was told by my doctor at the time to have my entire colon removed as no internal medicines were working for me including steroids. Finally the immune suppressant drug worked for me and I went back to my normal life slowly. I have tried many different alternative medicines since then including parasites cleansing, yoga, propolis and now celery juice by Medical Medium, Anthony William. I am from Japan so that I read Info in Japanese and tried some Chinese medicines also. I just wanted to write you to wish you the best and that the nightmare will end soon for all of us. Please take care!

    • Wendy
      Wendy Hammond May 14, 2019 at 7:53 am #

      Thank you for your encouragement and kindness. I do nit want ti be on thise drugs but doctors say they are not so bad and can control the symptims of Ulcerative Colitis. I am just tired of dealing with it. All the best to you. I am glad you are doing better on your medications. Thank you.

  10. Phil Simpson May 14, 2019 at 8:05 pm #

    Hi Wendy,
    I will try to be brief but keep in mind i could go into multiple horror stories on my UC. I was diagnosed with UC in Nov. 2009.
    Tried many medications over the next 2.5 yrs. None worked for very long.
    In hosp. Several times ………once for a week to replace 2 pints of blood that I had lost over a 3-4 wk period (along with loss of 20 lbs.)

    Then my gastroenterologist put me on Remicade. That was in June of 2012.
    I have an infusion every 8 wks. It’s painless & has been a miracle for me. I am in total remission ….and no side effects. Colonoscopy last year confirmed total remission.

    Remicade doesn’t work for everyone . I think it’s a matter of individual body chemistry.
    But it sure works for me.
    You might consider at least trying a couple other options before the surgery route.
    I know I would.

    Best wishes for a positive outcome.

    • Wendy
      Wendy Hammond May 15, 2019 at 7:44 am #

      Thanks for the advise. I know people who had this surgery and everyone is glad they did. One person at work has Ulcerative Colitis and they were fired after missing tonnes of work and hospitalizations over five years. He was on Remicade for the last part of it. It was horrendously expensive and he still got attacks. Some people are on it for ten years then it stops working. They have to remove their colon anyway in the end sometimes. They are now older and less able to handle the surgery. I am already 51. In my 60s I don’t want this kind of surgery if I can avoid it. I understand the other side as well. I vacilitate (hope I spelled that correctly) between the two options. Right now I am feeling surgery is the best option. We’ll see if I feel the same way in recovery!! Thanks for the caution and advise. I am thinking about it.

    • Wendy
      Wendy Hammond May 28, 2019 at 3:25 pm #

      Remicade scares me because it works for a time on many people then one day stops. The longer you are on it the more damage it does to other organs in your body that were once healthy. Also there’s a chance you could get cancer from it and you could get colon cancer. So these factors affect my decision. I just about went on it and asked forgot in the hospital. Then when I finally saw the doctor he talked me out of it. Anyway thanks for talking to me.

      • Phil Simpson May 29, 2019 at 5:30 pm #

        my experience has been excellent so far (7yrs.) I have oncology bloodwork twice yearly & colonoscopy every other year.
        No side effects….no new diseases. As I said, I think individual body chemistry is quite important with Remicade. Bad side effects are a small minority not the majority.
        But we all have to make our own decisions & I wish you the very best in what you decide.

  11. Julia Metzler May 22, 2019 at 10:23 am #

    Dear Wendy, I am just a little older than you (55) and also female. I completed my J Pouch at the end of January this year. I was also getting quite sick with my UC and had failed Simponi and Entyvio. It was either try Remicade or have surgery. I chose surgery for the same reasons – better younger than older, and no desire to fail on yet another medication.

    I was supposed to have 2-step surgery, but unfortunately that turned into 4 surgeries. After the 2nd surgery (to build the JPouch and close the ileostomy) I got a peritoneal infection from a leak as soon as I started soft food. So I had to have an urgent 3rd surgery that gave me a 2nd ileostomy. Then I waited again to reconnect the J Pouch and close the ileostomy. I did know going in that leaks happen 7% of the time, so I was just unlucky. I still think taking a chance on the 2 step surgery was a good choice. It would have been great if it had worked out! I did not like the first (end) ileostomy, but I hated the second (loop) ileostomy.

    I felt much healthier after the first surgery when the colon was gone. As much as I disliked dealing with the ostomy, I could not have continued much longer with the UC. Some days I wonder if I should have waited, but honestly I think I would have wound up having surgery soon anyway. And at least it was voluntary, not emergency surgery.

    Life after takedown is not yet GREAT, but it is better than how sick I was with the UC and it better for me than with the ileostomy. Doc said it would take a full year to adjust, and I believe her. But I do work a full time job, run, and lift weights again. I’d say I’m at 75% of where I’d hoped to be at this point.

    You have time to get in as good shape as possible prior to surgery. I also put the house in order, paid all my bills, and cooked a bunch of freezer meals to feed my husband and Mom for two weeks. Then I repeated that process before the next surgery.

    Some people have pouch failure, true, but techniques get better all the time. There is no set lifespan for a J Pouch. Some people have had them more than 20 years, and those were made with the techniques from 20+ years ago.

    • Wendy
      Wendy Hammond May 22, 2019 at 7:35 pm #

      Ugh. That scares me that you had to have four surgeries. I am not ok with two! But taking a chance and may have to have it eventually anyway like you said. I work full time stocking at Costco. It is very physically demanding. I do not usually work out as a result of my eight hour shift lifting. I used to run long distance. I hope I can return to work and do a good job there! My co-worker got fired from there because he cannot make itvto work so often because he has Ulcerative Colitis and he is doing drugs that work at the beginning then stop working. He then goes to the hospital and stays a week or so then tries a different drug that works for a while and repeats the cycle as he has for years. I do not want that. He was there barely at all for 6 years. Anyway, thanks for sharing your experience with me. It is good to hear how rhings can go not so smoothly when making a decision like this.

    • Wendy
      Wendy Hammond May 22, 2019 at 7:38 pm #

      I wrote back but I don’t know if it worked. Thanks for your information. It is good to hear this situation when I am making a decision like this. My co worker got fired for barely being at work for six years while on a cycle of trying new drugs, hospitalizations, and brief remission days. I don’t want that to be me. I hope you are 100% soon!

  12. Jo May 28, 2019 at 5:12 am #

    Wendy, I hope right now you are doing well.
    I encourage you to try the SCD … a diet Adam uses and talks about on this website. If you try it..do it all the way. You may find that it works for you.
    I know the choice for surgery is difficult. If you follow through with it you will need to change what you eat. For those of us without large intestines we do not absorb certain enzymes and minerals as we once did. Small meals about 5 times a day works best, along with supplements. Most doctors are not trained in nutrition, nor are many dieticians familiar with SCD, or how/ what to eat post surgery. I insist on two blood tests per year to look for any nutrtional deficiencies. Then change my diet/ supplements accordingly.
    Depite the surgery I still have colitus in the little bit of large intestine that I have left. I use suppositories to keep it in check..but that tiny bit still flares and bleeds.

    There is no perfect choice for handling this disease. It is a lifelong trial and error. There are ostomy, Jpouch support groups online…check them out!

    • Wendy
      Wendy Hammond May 28, 2019 at 3:20 pm #

      I don’t know if I replied to you or not. My phone is the only link I have at the moment. I heard that you can also get chrones disease after removing your colon and getting I-pouch and also that you can possibly have permanent antibiotics prescribed for the rest of your life after the surgeries. That’s scary as well. I don’t know for sure what the right way to go is, but I guess we all die eventually anyway. I guess it is a bit of a gamble with your life. I am grateful you are warning me of possible horrible outcomes. I like being aware of them at least when making a decision like this. I will keep that all in mind as well as everyone else’s comments. Thank you for taking the time to inform me of your experience. I think hearing first hand is more valuable than research. Although, I am still researching!

  13. Girlunky August 5, 2019 at 8:52 am #

    Hi Wendy, have you had any of your surgeries? Hope you are doing better than you were in the Spring.

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