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Wife of an Ulcerative Colitis Sufferer.Sad Story.

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Ulcerative Colitis
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Posted 7/24/2011 5:35 PM (GMT 0)

Hi to all the readers,

I am new here but have been reading many posts here and feel kind of better to know there are so many people who are in the same boat as us-me and my husband. I always feel terrible and worry too much about my hubby's health.There is no one with whom i can share my worries,pain as no one will understand. Thank god I found this site that is so helpful. You may not believe it but I have been actually reading many of these posts here and everyday planned of posting my prob here but couldn't due to taking care of my 2 month old baby boy and doing all other house chores. I hope you will read all of this mess we are in and will have good advise for us. It is long but I hope you will have time to read.

My husband has been struggling with this horrible disease since 2006. When his symptoms showed up - bloody stools and abdominal pain,he ignored them,thinking it's just a small prob that will go away in no time. His symptoms got from bad to worse.Then he decided it was time to go to a doc. He went to several doctors who misdiognised his disease.They said it was PILES and prescribed him drugs for piles.Time flied like that and he didnt get any relief.Those drugs actually made his symptoms go crazy. He also had this prob with not talking and telling his prob properly.he said he felt embarrassed telling the docs.he kept changing docs and drugs until he finally got to the right doctor who did a colonoscopy and found out his disease.He was put on Asacol right away which cleared up his symptoms and was told to come again after a month.. My husband never knew what the disease really was-on/off symptoms. He didn't go to that doc again as he thought, "oh, no more symptoms-Im cured!". After a few months,symptoms started again and his drug was finished so there he went again to that doc. His doc prescribed Asacol again.

To tell you the truth,my hubby was suffering from poor financial problem in those days.he had a big family to feed.he wasn't earning much.He had to take money from his salary to buy those drugs and give the rest to his mum.He was so ill but still had to work as there wasn't any choice-buy drugs to get relief or keep suffering. He never told his family what he was suffering from and spent most of his time at work-he was a driver,selling diesel oil.

He worked really hard to earn money for his treatment and family.

Anyway, he kept havinig on and off symptoms. This was all before our marriage in 2008.I didnt know he had UC.Of course I knew he had some sort of prb but I never knew what he actually had or what UC was. I have been doing research on UC ever since i found out abt his disease. We have moved  to Hong Kong-a city full of chinese people. I got his treatment going-from Asacol to Melasazine to melasazine suppositories to Prednisolone, Pred enema and now finally Azathioprine. Oh GOD!!! I never imagined he will be moving from one drug to the other without any long term remission. One day or the other,all these drugs stop working. Then why do docs have to give these drugs in the first place,knowing they will stop working without even helping the colon to heal? He hates taking steroids as they cause him to have a big moon face,weight gain,increased appetite and ACNE.lots of acne. Last time when he used prednisolone-from november till May-from 40mg to 0, he was fine till July only. His symptoms came back.So his GI has put him on 40mg of pred along with 75mg of Azathioprine now. He has many small reddish pimples all over his body.we arent sure what is causing them,pred or azathioprine?? Anywayz, now we are tappering off the pred.till the end of this month, he will be off pred. Thank god.

I have been keenly looking into FECAL TRANSPLANT. I am really interested in it.I have talked about it with my hubby but he feels disgusted. I dont know how i am going to convince him to do it. And i'm not even sure if any doctors do it here in hong kong. I talked to his GI at his last appt., on the 22nd july,but he simply laughed out and said, "If I were you,I wouldnt ever do it". He said it wont work. But I have faith and hope,after reading some of you people's experience doing it. I don't know from where to start. How can i find a doc here in hong kong who will help us do it? I want to try it at home but not sure how to do it.I can't even just go to the hospital to get my stool tested as i want to be the donor.Hospitals suck here in hong kong. You need to have a specific reason for everything you do. I'm not so sure about private hospitals except that they are so expensive and are gonna cost us my hubby's whole monthly salary. shakehead

For those of you who have done FT-for how long have you been in remission?

Another worry that is on my top list - what is gonna happen if we cant do FT and all the drugs stop working? surgery? Gosh! I can't imagine it. My husband is the one working as i have to take care of our 2 month old baby. I'm worrying my hair out thinking of our future. Can UC cause death? what is the most serious side effect that anyone has ever encountered while on these strong meds like prednisolone,azathioprine or remicade? Has anyone ever died of UC? Anyone knows where i can get VSL 3 here in hong kong?

Life is really unfair. I feel sad for my hubby,my baby and myself. Please support me. I am supporting my hubby in every way i can. From the outside I am strong like stone infront of him, but inside i'm melting away in pain. I hope GOD sends some sort of  miracle cure for this disease on earth and all of you UC sufferers get cured forever. I feel sad for all of you who are also going through this disease. sad

I apologize for writing too much.But i just cant hold it in anymore.I really want someone to understand my pain and give me advise. some people say surgery is the only and best option. But for how long does a person survive after completely removing the entire colon? There are just too many questions I want the answers to.

Thank you to those who have read this. I hope you can understand my situation and guide me somehow. I feel alone and aagghh.......painful it is!! i really love  my hubby n cant see him in pain. My sister passed away due to acute leukemia in 2007. Wounds from that pain havent even healed yet and now this other pain..cant see another loved one suffering.....

Posted 7/24/2011 6:45 PM (GMT 0)
Hey Sweet Poison. Welcome to Healing Well!

Wonderful to have you here though it's under such unfortunate circumstances. Hopefully we will be able to provide some helpful information and support. Fecal Transplant definitely has an "eww" factor but for me, I would do it in a heartbeat, it's nontoxic and it can have good results. I don't think you HAVE to have it done by a doctor, though, you may have better results it you do. If it's going to cost you an arm and a leg to go that route, you could try it at home at first.

Here is a thread with some info about the at home procedure:
https://www.healingwell.com/community/default.aspx?f=38&m=1612467


I don't know what you have access to in HK but here in the US, it seems like he is following a pretty common path. Usually they start you with 5ASA like Asacol and then you use steroids and if you're not able to taper off, you take azathioprine or 6mp and that should help you to taper off steroids and hopefulyl keep you in remission. If it doesn't, you should be getting the levels of the medication in your blood checked with a special test that tells you whether you're taking enough of the medication to get your into the therapeutic range. This is a range where you're getting the maximum benefit from the medication and where you will be most likely to get into a stable remission. If you're below the range, you probably will not have much benefit from the medication.

Another thing you should be doing is trying different mesalamine medications. Asacol isn't the only medication available. There is one that specifically targets the left side called Colazal. Do you know where the inflammation is the most active?  Have you tried any rectal medications? 

Has he had stool tests to check for bacteria? If it is infectious of bacterial, those types of UC are most likely to respond to fecal transplant. I personally believe that there are infectious cases that are caused by something unidentified that may respond to fecal transplant even though you have never had a test that showed something bacterial. It's worth a try in my opinion. I haven't tried it because of lacking a good donor. My fiance seems ot have IBS or something, he wouldn't be ideal. The testing is extremely important, especially if youre using a donor you're not comfortable with but with a husband and wife, I am not sure how much testing is necessary. It's always smart to do as much as possible but you have ot use your own best judgement.

I just want to give you a little support about surgery. If it does come to that, which I don't think it should at this point, it doesn't sound like you've even come close to exhausting all of the options. People do have very good results from surgery. It is extremely important that you find the best surgeon that you can that is not a general surgeon but specializes in ostomy surgery or j-pouch surgery if you're going to go that route. A Colorectal surgeon.

Please try to stay calm. I think you would benefit from speaking to a professional about your concerns. It's not healthy to have this all bottled up inside. I am sorry for all you're going through. I know what a shock it is to realize this is not a little inconvenience you can brush off, it's a life long, chronic illness. I don't feel like it was explained to me when I was diagnosed.

Posted 7/24/2011 10:10 PM (GMT 0)
I never imagined he will be moving from one drug to the other without any long term remission. One day or the other,all these drugs stop working. Then why do docs have to give these drugs in the first place,knowing they will stop working without even helping the colon to heal?

The simple answer is that one or more of these drugs does help some people. People on this forum have gotten success with some drugs. Not me but others have.

I agree with NSSG's reply above that he needs to try different versions of 5-ASA drugs, just in case one of them helps.

My other suggestion, because it helped me so much and is relatively easy to try, is removing gluten from his diet and see it it helps at all. Google "gluten foods" and see what you should remove for 30 days, it won't hurt and might possibly help.

If that does help the next thing to try is removing dairy. Dairy causes D in many people. It doesn't cause UC but can cause upset bowels and loose BM's.

After trying other 5-ASA meds you could also ask about the new multiple antibiotic treatment. You might have to do a google search and print put the newest research to take to his doctor. If that doctor says NO then find a new doctor who will work with you to find a treatment that works.

If you can't find VSL#3 look in your health food store for a refrigerated probiotic with the highest # of bacteria per dollar. I'm not sure VSL#3 is shipped overseas.

And no, most people do not die with UC, but it can be very exhausting and cause hospital stays if not controlled.

Good luck.
Posted 7/25/2011 2:53 AM (GMT 0)
And you can live a very long and full life without a colon! I've been doing just that for over 10 years.

Sue
Posted 7/25/2011 3:26 AM (GMT 0)
Sweet Poison-

This disease is so frustrating, I have suffered from it for over 8 years now with no real remission.  I too have done the full range of medications with no remission achieved. 

However, with this disease and as I research, it appears to be a multi-level disease; meaning there is no one magic pill to fix it however, statisical data on several options have been proven to bring people into remission who were facing surgery as their only option.  This is a journey...what is currently working for me to achieve remission...I know I'm on my way...

1.) Probiotics VSL#3 or VSL DS (double dose)-perscription only, my insurance does not cover it.

2)  Diet:  I went on a no sugar, no gluten, no alcohol, no dairy diet and got an antifungal medication (Nystatin or Diflucan) for about 6-9 weeks.   This balanced out the yeast in my gut...this may or may not be the problem...it was a great start and I did acheive one normal stool during this process...the bleeding has decreased.  The body can heal. 

3.)  I found a physician that would give me the script for LDN (Low Dose Naltrexone) 4.5mg.  Go to website www.lowdosenaltrexone.org  to learn more about this very low side effect, low cost medication.  This is an immune enhancer medication not the mainstay drugs that the GI professional would perscribe.    

4.)  Supplements.  L-glutamine, Vit D3, fish oil (omega 3), slippery elm, a good liquid multi-vitamin to make sure it gets into the bloodstream, NAG, NAC, I also use a little of physium husk to aid in bulking the stool, some people get good results with Aloe Vera juice and other supplements to aid in healing the colon.

As you read more on this website there are a couple alternative methods that have worked for people without the high ticket cost.  I have tried the Remicade, Humira route without remission achieve...I have spent thousand, thousand of dollars within the last 3 years...we are tapped out now.  With the economy in the U.S. being so poorly...I decided to do my research and found the above protocol with minimal cost.

Again, I'm on this journey of healing...

I hope this helps...you are awesome to be there for your husband!!  You will need to support, I found this forum to be so helpful for me to just learn!

Keep us posted!

 

Posted 7/25/2011 7:39 AM (GMT 0)
sweet poison. Welcome to the HW forums. I am so sorry to here the plight you are in and I can certainly sympathize with you. I am glad you have been reading the posts on this board as I have learnt much from here and I can see you have too.

Regarding VSL#3, I have tried it but it doesn't seem to make a difference for me. I currently reside in Shanghai, China and was told that I could have VSL#3 shipped (with cold packs) but it would be a little difficult because apparently I could not have anything greater than 1000RMB imported without customs causing a fuss (seeing as each box was something like 600RMB each, I in essence, had to import 1 box at a time making it extremely expensive). Luckily I had brought a suitcase full of cold packed VSL#3 with me when I flew to Shanghai so I still have plenty. I am not sure whether the importation laws of HK are the same of Shanghai though.

I know it is painful to see your husband in so much pain but I think you are doing a terrific job standing by him. Try not to worry too much about drugs spontaneously not working. There are still plenty of options out there. Prior to moving to Shanghai, I was a nervous wreck because I had JUST been diagnosed with UC so on top of having to come to terms with my chronic illness, I also had to insure that I would still be able to get the treatment I needed in Shanghai. I too was nervous about medications not working but luckily, Shanghai has everything I need (and their hospitals are surprisingly advanced and professional... more so than some of Australia's, my home country).

Also, you can't die from UC, so don't worry and surgery is not the end of the world but I do think doctors are too quick to suggest surgery without trying alternative meds first. I envy your husband because even after all he has been through, he is still very strong and trying not to affect others.
Posted 7/25/2011 11:58 AM (GMT 0)
Very sorry to hear your story. I feel for you. My parents always think I am/should be OK even if I tell/told I am not OK for many times. Finally, I reallized, this UC, is hard for any one to handle/accpet. So people would rather think I am OK. This does not happen on my parents only. - My best friend, also my leader, tell/argue that "you are not so sick" whenever he wants me to do additional work. And whenever I reject anyone's request (say, additional work, hangout, etc), they always say "O, you are looking for excuse to be excluded by pretending to be very sick".

I absolutely believe that many peopel I met are considerate. But, the first thing I want to tell is 'to be selfish'! Although it sounds not good, both my parents/best friends do not help me that much as I need them. The second thing is try to understand what is happending and get some recipe in this forum. My doctors do not believe probiotics/food work, however I saw many posts here say probiotics/spinach/sun flower seed work for them. If you can not make more money, finding a way of treating UC with less money amounts to making more money! Do research! The third thing is be strong/optimistic. It is hard to do (I haven't done well yet). Let us put it in this way, what is my choice if I am not strong?
Posted 7/25/2011 1:20 PM (GMT 0)

Hopeful4uc said...
got an antifungal medication (Nystatin or Diflucan) for about 6-9 weeks. This balanced out the yeast in my gut...this may or may not be the problem...it was a great start and I did acheive one normal stool during this process...the bleeding has decreased. The body can heal.

I am sorry to bump into someonelse's thread, but please tell me, you took Nystatin and Difulcan at the same time? and in what dosage?
Posted 7/25/2011 1:30 PM (GMT 0)
I am so sorry your hubby is suffering. I can tell you this: It really boils down to quality of life. My UC was so bad and unresponsive to the drugs that I had no choice but to have surgery. I just kind of knew when it was "time" to make that desicion. I couldn't even leave my house toward the end b/c I was so weak and I couldn't make it to a bathroom in time. I did try whatever I could first to hold on to my colon but that wasn't in the cards for me. I am very happy with how my J pouch surgery has turned out. If it comes to that for your husband, it could really be a blessing in disguise even though it's a tough thing to have to go thru.

I wish you both all the best and I hope he finds something that works for him very soon.
Posted 7/25/2011 3:05 PM (GMT 0)
75 mg of Azathioprine is a low dose. Unless, is he on 6-MP? Also, I just wanted to throw out there that Azathioprine/6MP take 3-6 months to take effect. So, you'll have to be patient to see if that works.

Several people here take a combo of that drug & 5ASAs to get into and maintain remission.

The big thing here that your husband needs to accept is that if he gets into remission he really should stay on his medication.

I hope this will work for him!
Posted 7/25/2011 6:35 PM (GMT 0)
I found 6-mp pretty effective. Soon as im off pred I flare up very very fast, but I got nearly 5 months with 6-mp on 50mg. Now on 125mg and back on pred but off pred in 3 weeks, so praying I stay safe?
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