Hi all Please do not read this if your worried about surgery, if you need or know someone that is having surgery I wish that you or them have a good and speedy recovery
I joined this forum to seek help for my husband and a nice lady called jan gave me some helpful information but I'm feeling fed up, my huband although alot healther than he was at christmas is struggling with the news that he still got UC and i don't know how to help him phyically or emotionally. So I hope it is alright if I vent. Hope this is the right place to do this and I apologize in advance for the lenght of this post and hope it dosen't scare anyone
My husband is 36 and up until August(2006) was fairly healthy only had two days off for flu in 12 years. In Octorber(2005) my husband optician said my husband had iritus and need to see doctor, which he did, Doctor refered to eye hospital where they said nothing to worry about. Shortly after this my husband got outer ear infection that would not heal sometimes they were slightly better but at other times they would swell so bad that you couldn't see his ear hole no treaments seemed to work, he started to get stange rashes, boils,ulcers in his mouth, very dry skin on hand/feet that would bleed and felt tired he carried on working through all this period. Then in August(2006)He suddenly started having loose motions, feeling an urgent need for bathroom, some pain and bleeding 3 to 4 times a day sometimes quite heavy. After seeing doctors they put him on pred-foam and prednisolone and the pain when away, he had a week off work at this point and they kicked up a fuss when he returned, so he decided not to taken anymore time off, even when i beg him to rest because he was so ill. He was sent for a camera invesigation which confirm he had slight to moderate UC on the left side of the bowel. He carried on taking steriods and changed his diet but the UC bleeds gradually got worst. Doctors tried differed steriods but nothing work in November(2006)he was admitted to hospital he was bleeding 20 to 25 times a day had a very high temperture and was in alot of pain it came on 2 days before he was admitted strangly.
For three weeks they tried a variety of treatments anal drips(very degrading), high doses of steriod etc nothing had much effect although they did manage to get the bleeds down to 10 to 15 a day and his pain seemed to be reduced but his health was declining even though he kept telling me he felt better he lost 3 and a half stone in this 3 week period and contract the hospital bug C-Diff colis which made him sicker. The doctors did another camera investigation and were surprize by result they said he must have a very agressive form of disease as UC had infected the whole of his colon my husband didn't what to have his bowel removed so they tried a few more treatments and then sudden decided he had to have Ileostomy as UC had become life treating and that he was becoming so weak that if they didn't operate then he wouldn't be stong enough. So he had emerency surgery and he started to recover. We started to look forward were pleased that UC couldn't affect him any more and that he would be able to have pouch surgery in 3 month and that then things would return to normal. His recovery rate was very quick he start to eat and drink normally things were going so well, he was clear of C-Diff colis and after just a week the doctor though he was well enough to go home they did a final blood test, a nurse phoned me at home to say my husband would not be able to come home today as his white blood cell count was up and this could mean he had a infection(This was a sunday no doctors) i arrived for visiting times in the afternoon and found to my horror my husband in the most terrible pain he told me it had come on through the morning, he was rolling a round the bed i beg the nurses for pain relief but they said he had Paracetamol and that he might have wind so she gave him a peppermint drink and got him to walk around all this did was make him throw up green slime i argued & begged and finally a doctor came to see him who prescribe him some morphine and said he might have a blockage. The pain releif seemed to help and i was send home at end of visiting times, i didn't want to leave. They promised me they would phone with any news if he got worst etc. I phoned every two hours through the night they said he was uncomfortable but o.k.(he later told me it was worst night of life, pain terrible and even through staff spent alot of time with him he felt very alone and scared) at seven O'clock in the morning, i managed to speak to a doctor he said they where going to send my husband for scan later that morning, half an hour later they phone me saying they had had to rush him into theatre. I arrived at the hospital to be informed the reason they had rush him in was his blood pressure had drop so low it was unreadable. Finally he came out of surgery and was in intentive care it was only then i apreciate how sick he'd become. He'd had a leak from the blind end of his Ileostomy which had poisoned his heart and lungs. This ment he had to be on life support as he was unable to support his own breathing or his circulation they said if another system when down he could die. In surgery they gave him muccous fisula to sort out the problem with the blind end. finally a couple of days before christmas he was taken off ventalator and shortly after that heart meds. but was kept in intensive care until new years eve because he was not well enough to be on normal ward,( I know i'm lucky he's here now and i meet some people that were not so lucky)Our daughter was allow to visit him on christmas day and was able to open a few presents in front of him she hadn't see him in weeks. Unfortuatly while here C-Diff came back and made him vomit alot so he couldn't drink or eat anything for weeks and he caught MRSA. adventally he start to recover and came home in january(2007).
At home he became stronger and fitter put on weight and thing were looking up the doctors said that because of the problems he'd had would have to wait six months to a year before they would do pouch surgery but husband was o.k with that as only short term measure(he manages the bags well but feels they restrict him, wouldn't feel comfortable swimming and they leak sometimes). And then 3 weeks ago he start bleeding again once every couple of days to start with but 3 times a day now and blood in his muccous fisula bag, his hands are cracked and bleeding again, he has bad spots/boils and his ears are infected again. Been to see doctor a few times now and he says he has UC STILL, said that because in alot smaller area now won't make him so ill, but that he might not be able to have pouch operation now. He also prescribed pred-foam and asacol and said diet would not help as area infected no longer conected to digestion system. He has been on drugs 2 weeks now and his condition worst not better. After he's taken tablets they sometimes end up whole in his stoma bag. Seeing doctor with him tomorrow Jan said something called a short chain fatty acid enema might help him so going to ask about it.
Sorry to talk so long and in a self-pittying manner. i felt angry that life seems to be so unfair at moment but writing this down made me realize how lucky i am that he's still around, I love him agreat deal and would be lost without him

I am so sorry to hear that your husband is having such a hard time I do hope he gets better soon, its very hard to see a loved one going through so much pain, my daughter had her surgerys almost a yr. and a half ago and has had a very difficult time but things do seem to be looking up for her now, some days she thought her life was ruined and seeing her that way really hurt, i wish i would have known about this website then because it really does seem to help when you can talk to someone else that is going through the same thing that you are and it would have helped to know that what she was going through was so familar to others on the website and just to know that in time she would get better, some days she felt like she was losing it and i felt like i was losing it right along with her, it is very hard but stay strong and hang in there because he wil get through it, keep us updated on his condition.

Lysie's Mom

As hard as all of this was on me, I believe it was much harder on my family who felt helpless at times watching me suffer. Hopefully talking to people here will help you feel less helpless. I wish you and your husband well.

I'm so so sorry to hear that things are this way for you. Just when we think it's looking up huh?
We too are still fighting new battles that just baffle us and the drs. Try thinking back to the "worst point" and judge from there. Although things for us are FAR from wonderful (now going thru full teeth removal for something that started because of all of this.... ARGHHHHHH - and back on prenisone until tooth removal is done so he can go on imuran), I still have to say it is better than it was for us in Dec (although Dennis said he's now back to the same point, I'll try to stay positive).
It's HELL to watch the one you love go thru this and be so limited in help. And you are right we ARE lucky they are still around to keep trying to fight. Please take care of yourself. Obviously, he's going to need you for a long time!!
Thru all of this, I still have hope that somewhere, somehow, we are going to get to the solution even with more surgery looming ahead.
I hope help is found for your husband soon and with all the problems he's having, it's a good thing that you are having to wait this long to see if a j-pouch is right for him. It will go much better for him if his health is more stable. I wish you BOTH the best.

Hello Figit,
You´re not being self-pitying at all! This sounds like a start-to-finish nightmare. I hope your fortunes will change soon and that your husband will start recovering properly. Surgery is bad enough as it is without the hospital bugs added into the equation. I almost lost my father to MRSA in 2005. It is a horrible thing for patients and their families to have to go through. I wish you both a much easier time ahead.

Hi all and thankyou for all your kind words and thoughts.

Feeling slightly brighter today husband has only had one bleed today so cross finger this continues.

Lysies mom, it was great to hear that your daugter is doing so well, hope for furture and like you I wish I had know about this site earlier.

Rani, thankyou for your kind words and i hope things are going well for you.

Joan H, You sound like your on rollercoaster ride and just want to get off and play on the round-about too, I hope you and your husband doing o.k. and that things improve greatly for you both in the near furture. Your right things have improved agreat deal since the worst point and i need to be thankful for that. Stay postive and thankyou for taking the time to write to me at what must be a very stressful time

Soph
I hope your father is well now and thank you for your kind words

My husband and I don't know anybody that has had similar experience so it helps to hear from you all. I didn't really expect a response, i just needed an outlet, but both my husband and myself are touch by every ones kind thoughts and best wishes and we wish you all good health and happiness and thanks again for your time. I will post any news
Bye for now Suzanne(figit)

Suzanne, I'm glad that you have been given a period of improvement. At least it gives you time to take stock of things. When you are on the runaway train, it always feels as if the only possible conclusion is a train wreck. But, as many of us have found, sometimes things just get really, really bad, before they get better. Also for many of us, it becomes an awakening, because suddenly the things that we always thought were so important are really quite trivial.

As for myself, I learned that everyday that I wake up is a blessed day, and once things got better, I realized that I am a very lucky person!

Jan

fidgit,

my son has uc and up until tonight I thought he had the worst case of uc in history. I don't understand it. I hate to see them go through so much. My son also has an illeostomy and a mucus fistula and he also went through a perforated j pouch. He was throwing up that green bile by the bucket full. He had horrible infection running through him. He spent 3 weeks on iv antibiotics in the hospital and oral for a few weeks after that. His fistula is a mess. It leaks so much we can't contain it. We also can't bag it because it's too close to his ostomy.
He goes in tuesday so the doc can figure out what he can do and might get rid of the fistula soon because the kids can't go anywhere.

Jan said it all so true I had many, many problems was in coma nearly died after step 1 and I still have problems 8 months later and things seem to get worse then they get better I have more moments now than I had in 4yrs that I feel better so I know things are improving but its hard to tell because u end up with 5 days of hell and a few days of good . Hang in there your not alone many of us had a rough time and things do get better just takes awhile.

First of all sorry for not replying before now had to replace PC (lease of worries)Thanks again for all of your kind support.

Secondly update folks on my husbands wonderful progress. Since last posting he started bleeding more heavly so doctor decide to remove his rectal stump, they did this and were luckly able to created his j-pouch at same time. His health proved very quickly after this finally no more UC and he was able to return to work in september. Three weeks ago he had his Ileostomy closed and i can't believe how well it is all going. Life is good.

Jan thanks again for support and we feel very lucky can't believe how well things are going

AaronMom13 Hope things are going better for you and your son now. Fistula are difficult my husbands was also close to his ostomy we found the best thing to use was a cap did hold alot but better that dressing or bag. I hope your son recovers as my husband has and that thing have improved for you and your family as they have for mine

Jeffm Thanks for encouragement and you are so right and i hope things continue to improve for you

Best wishes Suzanne (Figit)

Wow! Great news, and thanks for the update. So much better when we actually hear some good news after such a run of bad luck.

Jan

Hi Suzanne,

First of all I am so happy your husband is improving! I hope he continues to do well.

Second, please be sure to take care of yourself in all of this. It is easy to forget about the 'caretaker' so to speak and we get burned out by the physical caretaking and the emotional too. (My husband has been sick with this last episode - bad UC then surgery then complications and pouch issues, etc. for 2.5 years now.) Not to say it's not hard on the patient, but it's also hard on the caretaker and we have to remember to take some time out for us to 'recharge'. Are you able to do that? Perhaps seeing a therapist might help too if you're not doing so already. This is a HUGE stress to go through and having someone to talk to (aside from your husband/family) can be very helpful. You need someone who will be focused on you and your needs.

And yes, these boards are wonderful! The people here are great, supportive and you will find a wealth of info here too.

Best of luck to you and your husband.

Dear all
Thanks again for listening to me rant and the advice. Things just keep getting better and better. He going 8 to 10 times a day now and occasional even sleep through the night. Are planning our family holiday and cross fingers everthing will continue to go well
wishing you all health and happiness
Suzanne (Figit)