Hi all, I am new to this board. I have been reading here and there to find my hubby info over the months (SO helpful) but finally registered for myself as I think I need a little advice! My husband has had a rough battle as have had so many on here. Long fight with UC with progressive deterioration. Finally stopped responding to meds in 2005 (60 mg of pred/day wasn't doing anything except making his BP really high and making him really fat!) Tried all the stuff like 6-MP and even Remicade but got worse. Finally decided to have the old colon yanked in Jan. 06. Unfortunately he had tons of complications and wound up in the hospital for an entire month! Also had to wait a long time before getting the reversal due to some issues. Then infection with the take-down surgery so another extended hospital stay. But thought it was finally all behind us and he was ready to get on with his 'new' life after being sick and out of work for over a year. Nope! Pouchitis set in almost right away and he has been battling it ever since. Flagyl worked great but gave him neuropathies with some permanent nerve damage in his finger tips and the 1000 mg/day of Cipro gave him tendonitis. Switched him to rifaximin (12/day!) but then moved to CA and new insurance wouldn't pay for it (battled for months and they gave in). Unfortunately that stopped working. He has gone back on the Cipro, risking the tendonitis. Also trying meds (tricyclic antidepressents and antispasmodics) for IPS as they think he might have that too. Of course he is maxed out on anti-diarrheals....

So needless to say he is extremely depressed and just feels completely defeated. Of course it takes a lot to decide to get one's colon out and here he thought he'd be fine, and now he's as sick as ever with no 'light at the end of the tunnel'. For so long I have been telling him to 'hang in there' and I just don't feel I can say that to him any more. He refuses to see a therapist, however I do think I have finally talked him into trying an antidepressent (an SSRI, as the tricyclic he takes for the IPS is at a very small dose).

I just wanted to ask you all how you cope and also how you help your partners keep positive and keep going during times like this. I totally synpathize with him and what he is going through (I have actually had UC for 18 years) but he is pretty much shutting down now (refuses to go places as he won't go to the bathroom in public) and is so miserable he is unbearable to be around. Part of me feels bad for him and part of me wants to kick him in the butt, do you know what I mean? Any advice would be greatly appreciated!

Thanks!

Yeah - isn't this just the pits for the partner? Well, you need to take care of yourself so you can help your husband out. There's the trite answer for you.

Hopefully the new anti-depressants will really help. He should also go to a therapist who is familiar with people who have histories similar to your husband's.

I'm assuming that's he's had a functioning pouch for at least a year. It sometimes takes a year or more for things to settle in. One other med that you didn't mention him taking is tincture of opium. That's helped quite a few people. Is he also taking probiotics along with the antibiotics (although I don't know how he could get them in there without canceling each other out since he's taking so many per day).

I'm also wondering if he's having such a difficult time because of the high dosage of prednisone he was taking. Maybe a low dose would help get him back on track. I know, I know that he probably doesn't ever want to take it again. But if it can get him over the hump, then maybe it's worth it.

One of our members went through what you're now going through. You might want to PM her - her login is Cait. She's in England and I'm sure she'll give you some great advice AND have you peeing your pants from laughing. Her husband Dan was in the hospital for months and months.

Another thing you could try is to send your records to Cleveland Clinic for a remote consultation. They deal with a lot of problem pouches and they just might see something that someone else has missed.

My final advice is probably not something he'd like to hear - it might be time to consider that he's in that very small minority for whom the j-pouch does not work and it might be time to scrap that bad boy.

And finally (really this time) - you should post this in Need Advice Now or in the General Discussion area where many more people are likely to read this. Also, be aware that on weekends there aren't as many people hanging around so if you don't get responses right away, don't think it's YOU. (Although paranoia is always quite a nice trait.... )

Welcome to the site and hopefully you'll find the answers to get your husband all better again. At least he has a spouse who really understands what UC is.

kathy

As you can see by the title here it is Mark and Megan, Mark is the one with UC soon to have step 1 surgery, and I am the partner (13 years together, 6-7 years with UC). I know you are asking for advice from the jpouchers, but the one thing I know is that we as the partner must not lose ourself in their disease. It is important that you stay strong and emotionally, mentally healthy even though he is in a blue spell. You have to fight for you and your health at all cost, that is the best thing for both of you (trite as Kathy says, but so true).

We have been in a similiar situation to you where there was depression, no light at the end of tunnel, etc...the hardest thing with a chronic disease is the persitent failure, it just wears people down when there isn't the needed reprive.

If it at all possible, it would be great if you introduce him to this site, once we found this site we were no longer 'alone' and a huge weight was lifted. I started mulling around, and reading posts to Mark and then he started using it on his own and it has been a huge healing place for both of us. The people on this site are incredible and speak a language you both will understand. Even though there are many struggles discusses here you both will get a sense of quality of life improvement and maybe that will help him 'breathe' again. I agree with Kathy you should post this in general discussion topic area.

Welcome to you both!
Megan

Glad to hear that the forum has been of some help to you both; I know it has been indispensible for me since my colon was removed in November of 2006. Yes, undoubtedly, it is important for the non-ill parter to care for themselves just as much as caring for their spouse or significant other. If you neglect certain rituals simply to carve out more hours during the day, you will suffer in the end and no longer be able to be such a source of support. I can tell you that in my own experience with my fiance, his simply being there was all I needed. There is really nothing anyone can say to alleviate the pain and frustration that many of us go through. But I can tell you that Paul was the one holding my hair back when I was throwing up constantly from the 6MP, he was there every day during my many stays (one was a month) in the hospital, and he was there helping me scrub the sheets clean after an accident at night. I don't think I needed any further verification that he was there no matter what. So don't worry so much about what you say or don't say to him...I'm sure the fact that you've stuck by him through all of this means more than anything.

Hi Muggette,
Don't know how I managed to miss this post, but anyway - a very belated response form me here. I can relate to your hubby getting horribly depressed and not wanting to go anywhere or see a therapist. I can't really explain the mechanics of what goes on inside your head when everything goes wrong and you want to just close your eyes and not wake up. Now I'm out on the other side of all my surgery and post-op miseries, it seems strange to think I was so low back then (I'm 6 months post TD). My hubby wanted me to get help for my depression, but I just felt like "What can they tell me that I don't already know?" and "I know I'm miserable - so what can anyone do?" Also there was the feeling that if I sat down and talked to someone who knew exactly which buttons to press, it would unleash a flood of pain and torment that I wasn't sure I could deal with. Open the proverbial can of worms. So I think actually I was too scared to even open the door to therapy.
I know it's really hard on you spouses - we patients are often out of it on pain killers or too busy throwing up and being chained to the loo etc to be able to deal with the bigger issues. Getting through the day is all we can manage. At times you just want to be left alone in your misery, yet we'd never have made it through all this without you! I think that's one of the reasons why I took the death of our cat last week so hard - she was there for me through all my illness, always there to cuddle and get comfort from, yet I never had to put on a brave face for her! I could tell Baggy that I wanted to die, whereas I had to try to shield my husband and kids from those really dark thoughts. Being a spouse through this can be a thankless task, and I can really understand why you sometimes feel like kicking your hubby in the bum. I know I drove my hubby insane at times. I wish I'd found this website before TD!! It would have given me the therapy and support I needed, not to mention helping my hubby know how to cope. I hope you can get your husband to join the group. A lot of us out there know exactly what you're both going through. (And don't feel bad about being p***** at him at times - you're only human!)

Hi Muggette,

It’s your friend from Phoenixville, PA! As Soph said, sorry for the much belated response but I seemed to have missed this post.

It is a shame we never met up while you lived here in PA, many of my struggles are similar to what you Husband is going through. I too dealt with a lot of issues and felt very discouraged and depressed at times. Even when I felt good something as small as a smell could trigger a bad memory and set me spinning into depression. Luckily my Wife was there for me from beginning to end. We were dating when I came down with UC. Through two years of UC Flares and hospital stays along with another year of surgeries she was there for me. We have been married for eight years and have two kids now; she still sticks with me no matter what. I had a few good years with my pouch, but then had a few bad years. I’m now reversed with a temp-ostomy and not totally sure if I want to go back. Much like you are with your Husband, she was my Rock. Your presence and care means a lot to him (even though it may be hard for you to see).

The mindset he is in is difficult to describe unless you have gone through the issues. I never wanted to go see a therapist and anti-depressants made more depressed because I felt that I could overcome my problems without popping a pill. It was and still is a struggle. Maybe I’m just stubborn, maybe stupid, but I can’t change who I am. What I found that works for me is spilling my guts every time I feel down. My Wife gets the brunt of this and it always makes me feel better. Also, I have found many friends from this Web Site. I keep in touch via email and phone conversations with a few people here and I gotta tell you, speaking with someone who has similar or the same problems is about the therapy you can get for free! With that said, feel free to PM me and I’d gladly talk with you and your husband. I can even have my Wife get in touch with you if you like. I’m sure others will offer the same too. The support and friendships I have gained from this web site have had a tremendous affect on how I feel. I always have another J-Poucher to talk and commiserate with.

As mentioned in previous replies, it would be good for your Husband to start poking around this web site. He will be amazed that there are others out there in the same boat.

Tell your Husband I can give him updates on all the Philadelphia news and sports (Eagles Training Camp starts in a few days!!!!).

Best of luck and hope to hear from you!

Muggette,

You poor thing!! Sometimes I think it is easier to be the patient than the one who has to watch helplessly by the sidelines. At least as the "afflicted" one, I can blame my bad mood and bad behavior on my disease. You can't kick him in the butt and say, "Your UC made me do it!!"

In some ways, I know what you are feeling. After my 30 or so years of UC and surgery, my husband was diagnosed with UC. It was not until then that he told me, "I never knew what you were going through. I understand now." But, even though he understands and I understand him, I cannot really help him with how he copes. He doesn't like adjusting his diet to accommodate his colitis (or his diabetes). He doesn't like having to increase his medications to help stay in remission (he hates taking pills and it depresses him). I try to tell him about the evidence based treatment protocols, and he listens and still does what he wants.

But, yikes! Won't use public restrooms?! How did he survive UC? That would be incredibly isolating...

Bottom line is that you cannot help him, anymore than my husband could help me or I him. You can just be there to listen, offer support and ideas if he is open to them. But it is up to him to deal with it. I am also not big on psychotherapy and/or psychotropic medication, even though I know it has helped numerous people. For myself, it's never gotten to a critical level, nor for my husband. I agree that places like this site and just having frank conversations with each other is good therapy, and often is enough. Many times it is enough to know that you care and are concerned. We are all different in what we respond to.

Jan

I want to thank you all for your responses and support. At times I feel guilty even complaining. Although I have UC, I know it is nothing compared to what my husband has gone through (and continues to go through). Part of the problem is our difference in personalities I think. I am totally Type A and action-oriented/problem solver. If there is an issue I immediately do research and look for a solution and try it. My husband is the complete opposite, very laid back and can not make up his mind very easily. He'll want to wait a while and think about the next steps (while moping and being miserable in the process!)

I try be here for him in whatever way he wants and I know he knows I am, but I just feel it isn't enough. He's not one to talk about things. I have gotten him reading these boards a bit, but more 'through' me. (I am encouraging him to log on and do this himself and start communicating with people, but you know how it is when you're depressed - you don't have the energy/desire to do anything.) I did get him to start on an SSRI so hopefully that will help some in a few weeks. I also think (like you said Kathy) it may be time for him to consider that the j-pouch isn't working for him and consider alternatives (perhaps a k-pouch if not the dreaded bag!) We are going to consult with Dr. Launer who is thankfully about 20 minutes away from us and hopefully he can provide some guidance. I know I can't push my husband into anything, but I just want to see him healthy again, enjoying life and going out and doing things. If that means no j-pouch then maybe that's OK. I know it's easier for me to say!

Bill - I, too, am sorry we never met up when we were back in PA. However we'll be sure to let you know when we need some Tastykakes or Amoroso rolls sent out!

Thanks again all for your support. It really helps. I really like this site (always looking for things to help my husband and try to help others when I can). I really hope I can get hubby on here himself as I do think it would help him.