Hello all-

I've been lurking on the forums off an on for a year now. Husband (30) had UC and needed Emergency colon removal 10/12. He is a PHD student at UChicago. He had to take a quarter off and we were trying to plan his surgeries around school

My Husband had his Takedown surgery 12/12. From Day 2 he was in "unusual pain" They discharged him on 12/20 saying it would get better- and it got worse. By the time he went to the ER, he was wailing in pain nightly- out of Vicodin the doctors did not want to refill it. He couldnt sit, stand or lay on his side.

Anyhoo got admitted again 12/30 and the CT was clear. They couldnt do a manual viewing until 1/2 because of the holiday- pain meds were not doing much to ease the pain. They finally looked at his rectum- and found a bunch of Ulcers- and Anal Fissures with Ulcers in them (Surgeon said he had never seen something happen so quickly) They did an emergency Ileosotomy (on the other side because his stoma wound hasnt healed yet) and going to let the ulcers heal- He will be working with the GI team to figure out what's wrong.

Here is my problem. What can I do for him. He's being released today and he's still in pain! He keeps telling me I cannot "fix" this and " I cannot know how he feels"

His mom is here to feed him and take care- which is great because i do not have time off.

What do I do? What do I say?
Original Post
I'm responding to your post as I have similar issues as your husband with anal ulcers and fissures. My Gi prescribes rectiv cream for the fissures or nifedipine cream. He also prescribes a numbing cream lidocaine to ease the discomfort. When I'm really struggling and in toe curling pain I take OxyCotin or Xanax.

With the surgeon's permission, your husband can try warm bath soaks. He can and should do this several times a day to ease the pain.

For someone who has never experienced how debilitating anal pain is, it can be very hard to understand and it is not uncommon to feel helpless as a spouse. The pain is constant and unrelenting and with the jpouch functioning, passing stool by this area 6 or more times a day is living HELL. I never had ulcers in my anal canal in 25 years with UC until jpouch surgery.
To help him stay calm, see if he can get pain meds. Now that he has the ostomy, thAt should help heal the area and slowly relieve the pain. However, the ulcers and fissures can be one chronic once hooked back up. I did not develop them until about a year or more after takedown but had chronic inflammation and pain almost from the first day of my takedown and forward and was getting treated for it.

I am almost three years out and deciding whether to move to a perm ostomy or not. I'm not saying this will happen with your husband. I am just providing you with some information that he may want to think about and discuss with his doctors. Best of luck.
Thank you Jeane-

I am glad someone responded. The Lidocane cream burns him and makes it worse. They gave him percocet, but that doesnt help much. It is less now that very little (just some mucus) is passing through there. Have you had help with a Hot water bottle or a Ring pillow? It hurts to sit.
Warm baths will probably help more than any oral medications, as this is a very localized pain. The lidocaine might sting at first, but should numb the area pretty quickly, like in less than half a minute. Perhaps the concentration is not enough? I think 5% is what is usually used for this application.

Donut pillows can actually make things worse because they increase pressure in the anal area. I find that when I am having anal or tailbone pain, using a small pillow or rolled towel under one hip works best. It basically just shifts the weight to one side. I also like my Tush Cush for sitting at a desk chair for keyboarding. My pain is more tailbone, but I think it is good for anorectal pain too, as the areas are very close.

Jan Smiler
What to say to him...... maybe just say "nothing". I know that I was a bit hard on family members who were doing there best to take care of me when I came home from the hospital. Thank goodness they ignored my bit##ing and moaning and I always remembered to thank and appreciate them after the pain and issues subsided. I often wonder if I could do for them, what they did for me.

Sometimes we just have to vent out loud, yet we know there is nothing anybody can do to help. Just let him know that you are listening and ready to help with whatever HE decides he needs for comfort and that HE only needs to ask.
I have not used a hot water bottle or ring pillow by I swear by hot baths. Some days I take two or more. The cream should help and yes it does burn a bit at first. I find rectiv the best or fissures but often get an instant headache and my heart races a little after applying it as it enters the bloodstream pretty fast. Those side effects do lessen with more use.
My husband often allows me my space when I am suffering. He knows there is not much be can do and understands when I am in pain. On a positive note, I do have good periods. That's what has held me this long from going for the ostomy. I am in a good place right now where Canasa suppositories have helped but it changes so frequently unfortunately. Hope he feels better soon.

I forgot to tell you the other thing they may suggest is a mucosectomy with pouch advancement. This cleans away the remaining dusease in the small cuff and I believe anal transitional zone. After the mucosectomy, they detach the pouch to drop it lower and hand sew it. Hope he feels better soon.

Try to remember to not take anything he says (like "...you cant know...") personally. He's not necessarily pushing you away, rather more likely lashing out from the pain. One of our coworkers (my husband and I work for the same company) reminded me of this and I shared the conversation with my husband when he was in a calm time. He actually started giggling a bit, knowing our associate was right.

...as a side note, please don't make the same mistake I did by trying to point out during a pain induced rant that "...you as his spouse are going through this with him too..." the result is not good...lesson learned...tweak the approach...

I think you are a caring wife and applaud you for reaching out. I get frustrated when people try to cure me when all I need is an empathetic person to talk to and live with.  Yes you don't know how much pain he is in and you know that. Listen and ask if there is anything you can do like running to the store to get something he is having a craving for. Some find figuring out what foods are best to eat takes a while.  

It took my husband a long time to understand. We almost separated. He was looking for a condo and I told him if anyone was moving out it was me. That shocked him. You never know what it is going to take until it finally sinks in.  

Be supportive and don't try to solve his problems - just listen.

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