Thinking About Refusing the 3rd Dose and Demanding a Colostomy Bag


My name is Sandra. I’m 28 years old. I am from Ireland and I have 2 children aged 6 and a year and 7 months.

Some more about me:

I’ve been an Irish dancer since i was 4 but had to put on hold this year. I love blinging old clothes, shoes etc to make them look new :) My son had cancer as a baby and in November 2012 was 5 years clear.

My Colitis Symptoms:

Constantly on the loo. Some cramps here and there. Passing alot of blood which currently has me anemic.

Thinking About Refusing the 3rd Dose and Demanding a Colostomy Bag

I was diagnosed in January 2008 and was put on Pentasa sachets 4 grams a day and calcichew. I didn’t have any major problems. Now and then had asacolon suppositories as I’m unable to tolerate enemas. Then when I got pregnant on my daughter in 2010 it all went belly up. At 17 weeks pregnant I ended up in hospital as I was feeling very unwell and losing alot of blood.  I ended up having to have a blood transfusion.

Then from Easter until she was born on the 6th of June I had to have iron infusion twice a week as my levels were so low. I was literally in the toilet 24/7. After she was born I think I was ok-ish til the September and then started going down hill again. By early October I was put on oral steroids which helped a little. I had a colonoscopy due in may 2012. This showed slight inflammation (so the doctor said) but considering how bad I was feeling I knew it was worse then they were telling me but they just put me back on steroids.

By mid to late June I was unable to bring or collect my son from school. Mornings were my worst time.  If I didn’t eat I would be able to go places but I had to eat or I wouldn’t function. I was supposed to be going away to Italy with an Irish dance troupe in the August and the doctors had assured me I would be well by then. Haha if only. By late July early August I had started on Imuran but got a bad reaction so had to stop taking them.

The week before I was due to go to Italy the doctors told me I couldn’t go. Then early September they started me on 6mercaptopurine (6mP) and 10 days later after having bloods taken on day 8 I got a phone call to say I had to be admitted as I had no immune system and my hb was only 7.3. I then had a blood transfusion and having only been finished the steroids 7 days before they put me back on another course.

Then late September I started HUMIRA. A nurse came out to help me do the first dose (4 injections) then 2 weeks later I had to do 2 injections then 2 weeks later I done 1 injection and another 2 weeks later done 1 injection. At this point there was no change so the doctors decided to start me on infliximab. I had my first infusion on the 28th of November and my second one on the 12th December 2012. I then had to have an iron infusion on the 21st Dec.

I’ve had no change yet and am due my 3rd infusion next week on the 9th of Jan. I am seriously thinking about refusing the 3rd dose and demanding a colostomy bag. I miss my life terribly. I wouldn’t mind as much if I didn’t have children but I do and its so hard for them as I have been housebound since late July early august. My son has stopped asking can we go places or do fun things as he already knows the answer will be ” sorry son but I’m just not able”. He now says “Mam when your better we’re gonna do loads of fun things and have loads of picnics” I feel so bad considering how much hes already gone through himself and now hes missing out because I’m physically unable. Any suggestions on what I should do would be much appreciated. Thank you.

Colitis Medications:

Pentasa, calcichew ,suppositories, enemas, foam enemas, prednisone, imuran, 6mercaptopurine, humira and infliximab. So far for me none of these have made a difference.

written by Sandra

submitted in the colitis venting area

52 thoughts on “Thinking About Refusing the 3rd Dose and Demanding a Colostomy Bag”

  1. I can totally relate Sandra. I’ve been through all the hoops so far with Medicine. I’ve tried SCD. I have a surgery date of Feb 27 on the books in case Humira doesn’t decide to suddenly start working. You stated it perfectly… I just want my life back. In my case I want to get back to some sort of normal so I can even think about starting a family. I give you so much credit for carrying on, raising your kid, and working through this. Keep at it!

  2. oh sandra. i know how you feel. i’ve tried all the drugs you have, too. i start humira tomorrow morning and i’m hoping i don’t have nasty side effects and it works. i’ve been doing scd/paleo for a while now but still needed 2 blood tranfusions last month and 14 iron infusions. my iron and hemoglobin are just nonexistant anymore. i don’t know what to do to be honest. it’s like this disease is impervious to any diet/supplement/medicine. i will never understand it.

    just stay strong even though i know how hard it is. i’m sure your kids just want you to be well- they will look back on this and not care about activities they missed. it’s not important if they don’t have you there, you know?

    1. Joanna I really hope Humira works for you I have heard if it works for you its like a miracle so my fingers are crossed for you. :)

      1. sandra, it’s been a rough day. my humira loading doses were so painful that i don’t think i can go through with it again. i almost fainted from the pain and hyperventilating. my hands/feet/lips/teeth when numb and cold and my heart was racing. i only did 3 of the shots because i couldn’t handle doing another one.

  3. Isn’t it an ileostomy you should be demanding? :). As I’ve understood there’s no point in removing only parts of the colon of UC patients. The UC will just come back.

    1. Hi Emil. To be honest I havent a clue about the different bags. As far as i knowill be having tests done to see if im immune to the meds and if thats the case then whichever surgery is needed for life then that will be the decision as if i relapsed there wouldnt be any point in trying medicines if they didnt work before :)

  4. I also failed all meds and was miserable. I opted for jpouch surgery and just had my takedown last Friday. Best decision I ever made! No more UC and no more meds! I would strongly consider going for a jpouch! The recovery time isn’t horrible and neither is having an ostomy temporarily. Even if I had to.have one forever, it is much better than UC or the meds they use to treat it!

  5. No I think you are completely right in considering surgery especially since you have pretty much tried it all. I am considering surgery rather than going on immune suppressants or biologic drugs due to the nasty side effects and increased cancer risk. I also have 2 young children (3.5 years and 10 months) and want to be there for them and healthy enough to not feel like a terrible parent. My colitis has been the worst during my pregnancies and then post partum. Had a year of remission between getting pregnant with my second but that did not last. I myself would be interested in knowing how many people regret getting surgery for colitis as so far I have heard a lot of positives and wouldn’t it be great to be medication free. Best if luck! I feel your pain. I am currently hoping to be healthy enough to return to work in a couple if months and am trying some homeopathic remedies hoping to avoid imuran and remicade for now…

    1. Michaela ill keep my fingers crossed for you. It is definitely really hard with children. Ill keep the site updated as to how things are going :)

  6. Sandra, I can imagine you must be sick and tired of feeling sick and tired! Although an ileostomy would be an option, I would suggest that you at least try a change in diet first. If you “Google” gluten intolerance in Irish population- we use Google (I’m Canadian) as our most common search engine here, you’ll see a lot of info re the high incidence of gluten intolerance. I would totally cut out gluten and cow’s milk, at first, and really try to cut back on sugar. See if you experience any improvement. You will probably need a really good probiotic as well. Cutting out gluten means being vigilant with reading labels because there are a lot of hidden sources. If you have family members with other inflammatory diseases that would be all the more reason to suspect gluten. They may not seem related but there is a lot of current research being done on the connection between the health of our gut and disease throughout the body, not just the GI tract. Best of luck to you and keep us updated.

  7. Sandra,

    My name is Barrett I’m 31 and was kind of in the same boat. I was diagnosed last November and was on infusions of remicade for 4 months. I thought that I was in remission but the docs said that I had a reaction to the drug. In oct i was put on 60 mg of prednisone, then I was then put on injections of humira which also didn’t end up working either. I haven’t been able to leave my house since oct. I was in and out of the hospital about four to five times since oct. In Dec I was so sick of feeling like crap that I decided to have the surgery. I just had one surgery done on Jan. 2 and have an Illestomy bag that I will only have to carry for 3-6 months. So having the bag doesn’t have to be a preeminent thing. Ask your doc about having a j-pouch. I’ve been out of the hospital for 11 days and I feel great. I think it was the best choice I could have ever made regarding my UC. I’m having my take down surgery done within 3-6 months with a j-pouch. I would suggest to anyone that is sick of feeling sick to have the surgery. To be totally honest the surgery isn’t fun and I’ve had some complications but nothing major and its been pretty painful for the first week and half of being out of the hospital but ten days out of surgery I feel great and with in the next I will be able to back to my life. I’m a firefighter and have missed it so much and I know how you feel about having to put your life on hold. This surgery gives you that freedom back. If you have any questions please feel free to email me at rbfisher127@gmail. I hope you get something to start feeling better. Keep your head up.

    1. Hi barrett. Thank you so much for your feedback :) I will keep your email address thank you. I do think surgery is the best way to go… for now anyway but I do think I will need a bag permanently depending on tests but for me it is the best option. Delighted your feeling well and getting back on track :) Will keep you updated on how I am doing :)

  8. Hi,
    all i can say is that everyones experience is different with this disease and we make decisions based on our own life. It’s really hard to change someones mind. that being said, I have been doing a lot of research lately and it just seems that the research community is getting closer each day to figuring out this disease from many different angles. For me as I sit here running to the bathroom with BD 15+ a day :-O, I can only hope it comes soon enough. That being said, I am going to try everything possible to avoid surgery (no offense to those who had surgery) including giving myself a fecal transplant :-) If you have not already, may I suggest reading all the positives experiences out there as well.


  9. I totally sympathise with you Sandra, your symptoms sound very similar to mine. Like you I’m also fed up with pumping myself up with drugs to help me through the day and night and then getting fobbed off by my doctor when I say I can’t put up with this any more. I’m seeing one of my consultants on Friday and am going to insist they do something, hopefully a ileostomy or j-pouch as my life has been made totally intolerable. As Gail has suggested I tried to find out what it is that inflames the problem but unfortunately in my case, I can’t pin down any one foodstuff but that does not mean it will be the same for you and suggest you follow her advice. It was nice to read your son is now clear of cancer, my best wishes to both him and you.

    1. hi tony thank you for your feedback. As it stands I do think some sort of bag may it be tempoary or longterm is possibly needed to give the colon a break. I was never sick throughout my life until my diagnosis in 2008. I hate trying all the different drugs just to find out none of them are doing anything for me. I do hope all goes well for you and keep me updated on how your doing. Also thank you for your comment about my son :) fingers are crossed for you.

  10. Sandra, you are a walking talking case of why meds are not the answer! I have yet to hear of meds really working long term for any of us.

    Story after story…I hear the same thing. I tried this one, then it stopped working, so they put me on that one, it made me sick, so I went on this other one…and so on.

    I would totally choose surgery instead of this medical roller coaster. These so called UC drugs seem to be only dangerous and also seem to offer no hope or working long term.

    You are the boss of you…not the doctors. They can guide you, but you make the ultimate decision. You have ALL the power.

    I can’t imagine having children to care for throughout all of this. Thankfully, my son was in his twenties and out of the home when I was finally diagnosed. As everyone on this site knows, as nauseum, I will not ever take meds again…no matter what. (I’ll have surgery first). I prefer to treat UC as naturally as I can. I am only using probiotics, L-glutamine, vitamin D, and that powerful natural little anti-inflammatory, astaxanthin. That anemia is a bitch…I’ve been there and had the infusions…you have to stop the inflammation, which, in turn, will stop the bleeding. The vitamin D (4000units, the fermented L-glutamine, and the 4mg astaxanthin is what stopped it for me).

    Do I dare say…hang in there? If you want to, choose the surgery. These drugs do not work, and often do more harm than good, as you’ve experienced.


    1. Hi Bev thank you for your feedback. I do think at this stage surgery is the best option for me and my children. Although I will weigh out all options before fully deciding what to do :) I will keep the site updated on my path. I hope you keep well :)

  11. Hi everyone thank you so much for your feedback. I have tried changing my diet an have totally cut out dairy but unfortunately as tony states I cant pinpoint any certain foods. On the 9th of jan when I went in for the 3rd infliximab infusion my nurse told me she had a meeting with my team as my bloods showed my inflammation levels were higher instead of lower and they said at this point of treatment they should be dropping so therefore the infliximab isnt working either. They decided to give me the infusion anyway (probably so it wasnt wasted) and I got phone call today to say I will be admitted to hospital in the next 24-48 hours (as soon as theres a bed)and they are starting me on I.V steroids and organising an mri. Then the surgical team will speak to me. To be honest I dont know much about any surgery/bags etc. I will ask when I see the surgical team. On a brighter note since I first wrote my story my son had an appointment with his surgical team (as he has gallstones) which I had to miss but his dad took him. Anyway the gallstones arent causing any major problems and are too big to block any tubes so unless he has any major problems they wont need to see him again. Also november 2013 should be his last cancer check up. :)

    1. Chris from Massachusetts

      Hi Sandra – I am so sorry you are going through a Flare!! No one but UCers know how weak and tired they make you feel. During my flares White Grape Juice mixed with Seltzer water has been the only thing I can tolerate.

      I have to ask though does meat bother you?? I pretty much eat all meat (with lactose free Dairy) and do not have any problems handling it?

      1. Hi Chris honestly i had changed my diet drastically but it made no difference to me so I went back to my normal eating routine bar dairy. Maybe once every 2 weeks i make homemade lasagne and i do put cheese on the top. Regarding meats I eat them all. Everything effects me but my worst is milk and chocolate :( I love chocolate but its not worth eating it as I never thought I could be worse than my worst but after chocolate I am so i totally cut out milk and chocolate. I hope this helps :)

        1. Chris from Massachusetts

          Thanks for your response Sandra – I know that you have given everything into this disease. I tried a million different diets until I realized all I could digest is really meat. I cant help but recommend it to you since it worked for me, but I understand if you do not want to. If you do try though and if you get constipated – which is what happened to me – just give yourself a warm salt water enema. And also make your own meat – because most food bars and restaurants will add crap to the meat. No bacon. If you need fruit I eat berries, skinless apples, oranges and white grapes. White grape juice with seltzer water is key for me during a flares =)

          I understand though your hesitance for starting a new diet =)

          God Bless Sandra!!!!!

          Love Chris.

    2. Sort of good news for you today then Sandra, you are being admitted to hospital. I’m sure I’m not the only one on here who wishes you well. Good news about your son also.

    3. Chris from Massachusetts

      Good Luck Sandra!!!!!!

      I am sorry about the flare up – those are so hard – whenever I go through them I just have myself a good old movie marathon =) Cause laying there and getting up to go the bathroom is about all I can do! =)

  12. Thanks tony and chris ye ill miss tv when im in hospital haha will have to bring netbook and broadband toggle :) I will consider all my options before fully deciding what I’m going to do :) Thank you all for your support it means so much to be able to chat to people who understand :)


  13. All the best Sandra, I really hope whatever happens next you get some rest and relief. This is such a horrible disease and such a roller coaster. I’ve only been diagnosed since August and I’m seriously getting myself ready to fight for something drastic to be done soon. My kids need their mummy back and I need my life back. Good luck and hope the hospital stay is bearable… I liked the iv fluids I felt the best I have since may when the second bag went in :-) xxx

    1. Hi Jen. Jpouch is d way im thinking of going. My teamand the surgocal team have a meeting on thursday and will give me my options so ill jus need to decide then :) My kiddies definitely need their mammy back. Roll on recovery :)


  14. Hi Sandra, I hope that you are feeling better today. I suffered from UC for years and wound up having my colon removed. My colitis had gotten to the point of having blood transfusions every week for about a year. I lost count of how many I had. Me and hospitals became good friends because of my constant stays.

    I went through the series of prednisone, asacol, humira, remeicade (which was working but developed a reaction to it so had to get off of that) and other medications I cannot remember. The way my doctor explained to me I had the worst case of Ulcerative Colitis, I developed infections and blood clots. There was a constant battle of taking blood thinners because of the blood clots but keeping me off of them because of the amount of blood being lost.

    In the end after numerous colonoscopies it was determined that my colon had to be removed. I was shown the results of what my colon looked like, trust me I was stunned on how bad it was. During the surgery my spleen was removed as well, my colon had inflamed so much that it and the spleen had fused themselves together, During the removal of the colon the spleen broke so it was removed totally.

    I now live with my bag. Is it the best of life? For me I am still having some issues, but it does give you some if not most of your freedom back. I no longer have to worry about are there restrooms along the routes I am taking, whether it be s trip to the grocery store or any place I was going. I was pretty much bed ridden because of my blood clots and the weakness the blood loss was giving me. I missed my moms funeral and could not see her in her last days.

    I now have the freedom to do more than god knows when. For me it has helped, I cannot speak how others feel about it. Do what you feel is best for you…that is the only suggestion I can give you. Good luck with whatever you decide and my prayers I send as well.



    1. Hi Gabe, I am in hospital and had iron infusion today in 2 weeks my iron levels went from 10.1 to 6.3… Big drop!!!! My team and the surgical team have seen me and have suggested surgery is d best option. They’re having a meeting on thursday and will then come to me with all options and chat to me about procedures and how i feel etc. I do think surgery is the best for me right now and it will b reversable so on and up from here on xxx hope you keeping well :)

      1. I have been doing ok though could be doing better. Hope that things have gotten better for you. The choice you decide will be what is best for you because in the end it is you that matters the most. I had one doctor not wanting me to have my colon removed while another did. In the end it was and as I mentioned earlier it needed to be removed.

        Take care of you.

  15. Hello Sandra,
    I am sending you healing thoughts and prayers. I am 60 years old and have had a permanent ileostomy for a year and a half. It’s a bit inconvenient, but the freedom from the disease is worth it!! I didn’t even realize until months after my 2nd surgery that UC had really robbed me of my self and my life. My surgeon told me that if I were young (like you) he would have encouraged me to have a j-pouch. I frankly didn’t want the extra surgery and was so anxious to have my health/life back that a permanent ileostomy was the best decision for me. Whatever decision you make, I wish you the very best.

    1. Hi Sheila. I am currently in hospital and the jpouch is what has been mentioned to me. My team and the surgical team are having a meeting on thursday and will then come to me and discuss everything in full detail. Cannot wait to have my life back for myself and my children :) I hope you keep well


      1. Thanks for your good wishes, Sandra. Just imagine yourself feeling GREAT, having a blast with your kids and eating food without fear. Life is Good!! That is what is in store for you!!
        Sharing a diary of your experience will be so helpful for others!! Good luck!!

  16. I can totally relate to the meds not working! But I’ve heard cases where infliximab can take up to 7 months or more to work. Have you been tested for celiacs or c-deficile infections ? When the medications didnt work for my boyfriend, it was because he had c-deficile infection.

    1. Hi Alayna. Ye all tests have been done for infections etc. Surgery is the way for me for now anyway and can be reversed so on and up from here on :)

      Thanks for your comment and time :)


  17. Hi, I can completely relate to this, I was diagnosed at 15. Suffered terribly for 3 long years, in and out of hospital, 6 endoscopys constant supply of prednisolone, and iron infusions, at one point I had 26 tablets a day! Nothing worked and so at 18 on 25th November 2009 I had my bowel removed and now have an ileostomy. It’s the best decision I ever made! Although I now have to wear different clothes and carry a spare bag around in case of any leaks etc, my life is now fulfilled as I found out in September 10 I was expecting my first baby. Now she is 20 months, I am 21 and life Is great! We are always at soft play areas running wild! I’d talk to your insult ant about your options! :-) xxxx

    1. Hi Hannah, thank you for your comment. My team and surgical team have both been to see me today and jpouch has been mentioned. They’re having a meeting on thursday and will then come and speak to me and give me all my options and leave the decision up to me :) Roll on getting some sort of life back for me and my kids :)

      Super excited


  18. hey sandra, so i se u been through all the meds and so have i.. nothing was working for me..i had the j-pouch surgery and byebye uc. i only had the bag for 3 months and it wasnt that bad at all. i go to the bathroom max 4 times a day, morning, afternoon at work, and at night and sometimes i wake up in the middle of the night. it gave me my life right back.

    1. Thanks for your comment Marq. Jpouch has been mentioned to me and my team and surgical team are having a meeting on thursday an will give me all my options :) I’m excited to get my life back for myself and my kids :) delighted your doing well.


  19. Hi Sandra;

    I have only been in the “UC Club” for about 6 months now, but I now know that the membership is expensive, and the benefits are a total bummer, and I’m anxious to get out of this club. All the meds have just ganged up on me, beat my body up, and get really confusing after awhile. My family has been robbed of too much time without their dad and husband. Reading your notes, I was very encouraged and wish and pray for the very best results for you in your surgery! Even though it has only been affecting me for 6 months, I too am already considering the surgery.


    Mark from SoCal

    1. Hi Mark thanks for your comment. Ye its aweful when meds dont work. I am still in hospital.Surgery was scheduled for monday but a colonoscapy done yesterday showed my inflammation has spread further around the bowel so the team have to rethink which surgery I need. I hope and pray for you that you get better. The only thing I can say is stay as positive as possible.I try everyday to be happy and just look foreward to being better. There is a light at the end of the tunnel just some tunnels are longer than others. I hope all goes well for you and your family so you can get back to normality.

      Love to you all.

  20. Hi guys just a little update from my hospital bed!!!! Surgery was scheduled for this monday the 28th of Jan but a colonoscapy done yesterday showed my inflammation has spread through more of the bowel so my team and the surgical team are having a meeting on monday morning to talk about my colonoscapy and biopsy results. Fingers crossed

    Stay positive
    Sandra xxx

  21. Hi Sandra

    So sorry to hear you are going through such a rough time. Your attitude is amazing – you are one strong person! Excuse my ignorance everyone, but how does a J-Pouch actually work? Is it basically a fake colon? As i understand it, an ileostomy is when a person has the bag and the J-pouch is not a bag?
    Reading all the comments here, I find everyone really amazing – obviously the strongest people are picked to have this disease!
    Love to all and best of luck Sandra xx
    BevL (sunny cape)

  22. Hello Sandra,

    I totally understand what you are saying and going through. I would love to hear how your surgery went and that you are doing well. I actually am tired of the meds too and have my surgery scheduled for June. This disease is a pain in the butt in more than one way. I am amazed by your strength and know that you will make it through this and be stronger than ever in the end :)

  23. Good article, happy to know that recovery from the reversal isn’t as painful or time-consuming. Suggestion for cleaning the bag when away from home. After you unclamp the bag, fold it back on itself like a cuff. After you have emptied it, wipe off the new end, then unfold the cuff. At this point, I lay it on my leg and with the “male” side of the clip, scrape the residual back up the bag a little way. This keeps the end cleaner and keeps the clip from squeezing feces out. I would be careful about how much olive oil you put in it, because it will cause the adhesive patch to release. Also, DON’T use Alli for dieting purposes only colostomy diet, because it really works! And it turns any fat you consume into liquid grease, and the adhesive won’t work, AT ALL.

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