Hubby had surgery Monday

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Rhubarb
Regular Member


Date Joined Jul 2007
Total Posts : 21
   Posted 2/14/2008 11:44 AM (GMT -6)   
I don't post much, but I read a lot, and find lots of good info here that I share with my hubby. Sometimes it's helpful info, sometimes it's just nice to know that we're not the only one's going through all the junk that comes with UC and the meds!

Anyway, after battling an almost constant flare for nearly a year, his doc recommended surgery. On Monday he had his colon removed at UCSF, and is doing very well! The surgeon planned to remove the colon and set up the jpouch, but since hubby's been on the pred for so long, and still at 30mg, the doc decided to just remove the colon, set up the ileostomy of course, and wait a few months for him to heal and drop the extra pounds he's acquired from all the extra snacking while on the pred!

The morning after surgery (Tues) he was still in pain, but not nearly as much as the night before. He was able to get up and go for a short walk that first morning, and aside from being tired and some pain from he surgery, he felt pretty good. On Wednesday the doctor ordered him back to a clear liquid diet, and he tolerated it with no problems. He walked some more, and with the addition of the liquid diet his output increased and everything seems to be working well. Today is Thursday and the doctor has moved him to a full liquid diet, so he got some hot cereal and yogurt for breakfast. He said it felt weird and almost painful as the cereal moved through, but it was only temporary and he's doing well. Pain meds have been decreased, IV fluids have been stopped, and the doctor said we might get to go home tomorrow!

So far so good - it's been so nice for him to be free of the UC pain that has plagued him for so long, and to know that the pain he feels now from the surgery is only temporary and will heal! Our goal now is to get home, get healed and taper off the prednisone, which the doc said would take about 5 weeks. As he gets better I'm hoping we'll be able to be more active, which will help him to drop the extra pounds, and in a few months we'll be back for the jpouch surgery.

I've read so many varying accounts of people's experiences with surgery, and I think it helped us to be prepared for what to expect. I hope our experience might be helpful for anyone who is considering surgery as well. Surgery certainly wasn't how we wanted this to go, but life has been pretty chaotic for the past year with his cranky colon dictating where and when we go places, kept him off work all that time, and basically made life miserable, especially for him. I am so gthankfl for the option of surgery, and for a good hospital and a great surgeon here at UCSF - we have been very pleased with the whole staff here - as far as hospital stays go, this one has been very pleasant compared to some.

If anyone has any questions about our experience, I'd be happy to answer them as best I can - just ask!
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Started Digestive Advantage Colitis formula 7/16 - hoping for some relief!
1/11 - some of the meds are hit and miss at this point. Back on Prednisone for the 4th time - can't stay in remission without it now. Think he has stopped the fish oil, Digestive Advantage (although he said he thought it helped)
Consult with a surgeon this week, surgery recommended
Surgery scheduled for Feb. 11
Colon removed! Jpouch surgery will come later - tapering off pred, healing from surgery, and shedding those pounds gained during all the pred induced snacking!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 2/14/2008 1:17 PM (GMT -6)   
Hi Rhubarb....I'm happy to hear your husband is doing well at this time so short after surgery! Great testament to a viable option.

I hope his recovery continues to go smoothly. Please keep us posted.

Did the doc mention to you about the condition of his colon?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Rhubarb
Regular Member


Date Joined Jul 2007
Total Posts : 21
   Posted 2/14/2008 1:35 PM (GMT -6)   
Thanks quincy! He did say that his colon was inflamed, and the resident who assisted with the surgery took some picutres of his colon after it was out - he said he would email them to us, but we don't have them yet. He did show them to us and showed places where near the upper end you could see healthy 'folds' and near the lower end it was all smooth, signs of damage from the flares. If we ever do get them, maybe I'll post them.

He also said that he left the rectum, and it was inflamed as well, but that it usually goes down on it's own when there's nothing passing through it any longer. If it is a problem, he said it's easily treatable with suppositories. So far it's not bugging him at all though. :)

I will keep you posted!
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Started Digestive Advantage Colitis formula 7/16 - hoping for some relief!
1/11 - some of the meds are hit and miss at this point. Back on Prednisone for the 4th time - can't stay in remission without it now. Think he has stopped the fish oil, Digestive Advantage (although he said he thought it helped)
Consult with a surgeon this week, surgery recommended
Surgery scheduled for Feb. 11
Colon removed! Jpouch surgery will come later - tapering off pred, healing from surgery, and shedding those pounds gained during all the pred induced snacking!


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/14/2008 2:10 PM (GMT -6)   
I am glad he is recovering so well. How big and where are the scars if you don't mind me asking?
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/14/2008 2:18 PM (GMT -6)   
Rhubarb,

Glad to hear your husband is doing well after surgery. How is he dealing with the ostomy? I know for myself it took me awhile before I could get accustomed to it. If you have any post surgery questions you can go to the ostomy boards and there are a lot of people that can help. There are a couple things doctors don't tell you to expect after surgery that are completely normal, but can send the patient in a tizzy if not prepared. Any questions you have, feel free to ask. :-)
Theresa

Originally diagnosed with CD in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 2/14/2008 3:10 PM (GMT -6)   
Glad to hear your hubby is doing well. Please keep us posted!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/14/2008 3:19 PM (GMT -6)   
All my best to your husband. He is in good hands, the CR surgeons at UCSF are top knotch!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Rhubarb
Regular Member


Date Joined Jul 2007
Total Posts : 21
   Posted 2/14/2008 4:19 PM (GMT -6)   
princesscolon said...
I am glad he is recovering so well. How big and where are the scars if you don't mind me asking?

He's got four incisions, plus the ileostomy of course! The biggest one is right about at the 'bikini line' and about 4 inches maybe? They said it's very similar to an incision for a c-section in length and location. The others are small, maybe an inch each, one on the left side, one right at his bellybutton, and one on the right - these were used for a camera and tools during the operation, and the big one is where they removed the colon.

tbraz - so far so good with the ostomy - he is supposed to change the bag himself today with nurse supervision. He's empties it on his own, but hasn't done a change just yet. Thanks for the info on he ostomy board - I have been over there a few times already. I'm sure there's lots of good info there just like here - and I know what you mean about getting info that the doctors don't tell you! That;'s what I love about this place - you find people going through the same things you are, and it helps you to know you're not crazy! LOL

suebear - thanks! I agree - this place has been great all the way around. We are very pleased with the doctors and nurses - everyone has been great. As much as we hoped to have the jpouch set up this time around, we are glad that he was careful and considered my hubby's situation and what was best for him - not just assembly line, cookie cutter type stuff. Even though it means more time with the bag and possibly two more surgeries, we're happy that his goal was to do what was best for hubby's situation.
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Started Digestive Advantage Colitis formula 7/16 - hoping for some relief!
1/11 - some of the meds are hit and miss at this point. Back on Prednisone for the 4th time - can't stay in remission without it now. Think he has stopped the fish oil, Digestive Advantage (although he said he thought it helped)
Consult with a surgeon this week, surgery recommended
Surgery scheduled for Feb. 11
Colon removed! Jpouch surgery will come later - tapering off pred, healing from surgery, and shedding those pounds gained during all the pred induced snacking!


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 2/14/2008 5:49 PM (GMT -6)   
"He also said that he left the rectum, and it was inflamed as well, but that it usually goes down on it's own when there's nothing passing through it any longer. If it is a problem, he said it's easily treatable with suppositories. So far it's not bugging him at all though. :)"


That's great to hear he's doing well. My husband and I are almost at your point and are looking into surgeons for the surgery. Did you surgeon or GI try to talk you out of getting the surgery because he had colitis in his rectum as well? Ours is trying to tell us that the J-pouch isn't an option.

Rhubarb
Regular Member


Date Joined Jul 2007
Total Posts : 21
   Posted 2/14/2008 6:03 PM (GMT -6)   
UC Wife in MD said...
That's great to hear he's doing well. My husband and I are almost at your point and are looking into surgeons for the surgery. Did you surgeon or GI try to talk you out of getting the surgery because he had colitis in his rectum as well? Ours is trying to tell us that the J-pouch isn't an option.


Nope, none of the doctors we've seen ever tried to talk us out of the surgery. They didn't check for inflammation prior to the surgery either - I think his last scope was a sigmoid probably back in
August of last year. But the surgeon did know that anytime hubby went lower than 30-35mg of pred he got worse, and that he wasn't feeling 100%, so suspected that there was inflammation there.

His regular GI doc recommended the surgery, and referred us to UCSF to a GI doc. She reviewed his case and told us that surgery was definitely a valid choice, and referred us to the surgeon. Several weeks later we had our consult with him, and he reaffirmed what the GI docs had said. He was great - answered all the questions we had, and his nurse practitioner was great as well, also answering a lot of questions for us before we even asked them.

I hope you can get some answers or maybe a second opinion on surgery options for your husband. Our surgeon is supposed to be one of the best - he's the guy they send patients who've had a botched job elsewhere so he can fix them!
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Started Digestive Advantage Colitis formula 7/16 - hoping for some relief!
1/11 - some of the meds are hit and miss at this point. Back on Prednisone for the 4th time - can't stay in remission without it now. Think he has stopped the fish oil, Digestive Advantage (although he said he thought it helped)
Consult with a surgeon this week, surgery recommended
Surgery scheduled for Feb. 11
Colon removed! Jpouch surgery will come later - tapering off pred, healing from surgery, and shedding those pounds gained during all the pred induced snacking!


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 2/15/2008 2:13 AM (GMT -6)   
Best wishes to your husband and well done to you too for being such a supportive wife.
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/propranalol



        http://www.myspace.com/martybuzz1<FONT]


Rhubarb
Regular Member


Date Joined Jul 2007
Total Posts : 21
   Posted 2/15/2008 1:37 PM (GMT -6)   
Thanks Marty!

Hubby is still doing well - the docs have moved him to a full (but low residue) diet, but he hasn't gotten and real food just yet. He should get some solid food for lunch today. And the really good news - they said he can go home today! Yay! I am so amazed that he had surgery on Monday, and we are going to be out of here on Friday!

He's had no problems at all - no nausea, no problems with infection, no blockages - everything is working as it should. The only real pain he is experiencing is at the lower and largest incision - especially after sleeping or anytimes he's been sort of 'curled up' and then straightens out or stands up - the stretch is painful down in the muscles. But a single vicodin helps and knocks out the pain.

We will have a home care nurse come to check on him and help with any ileostomy issues, which is reassuring, but hopefully he will continue to be problem free. We thought we would have to come back next week (it's a three hour drive) for staple removal, but they said we could have that done at home by our own doc.

It's nice to know we're free of this disease! Of course we're not 'out of the woods' yet as far as surgeries, but just to know that hubby is no longer suffering from UC pain is wonderful.

I'll keep posting his progress, and if anyone has advice for us or questions - please let us know! This board has been so helpful!
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Started Digestive Advantage Colitis formula 7/16 - hoping for some relief!
1/11 - some of the meds are hit and miss at this point. Back on Prednisone for the 4th time - can't stay in remission without it now. Think he has stopped the fish oil, Digestive Advantage (although he said he thought it helped)
Consult with a surgeon this week, surgery recommended
Surgery scheduled for Feb. 11
Colon removed! Jpouch surgery will come later - tapering off pred, healing from surgery, and shedding those pounds gained during all the pred induced snacking!


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 2/15/2008 11:33 PM (GMT -6)   
Rhubarb, glad to hear your husband is getting better. Hope he keeps feeling a bit better each day! Keep us posted on how he is doing and let him know we are thinking about him.

--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


Rhubarb
Regular Member


Date Joined Jul 2007
Total Posts : 21
   Posted 2/18/2008 9:54 AM (GMT -6)   
Hubby is still having quite a bit of pain. For those of you who had surgery, how long before you really started to feel better from the surgical pain? He still has the staples in, and I'm hoping getting those out this week will help some. I've never had any major surgery before, so I can't even relate to his pain.

I do think some of it is just gas - he complains of his back hurting, and I've read here and on the ostomies board that gas pains can hit ya in the back and between the shoulders. He has used gas-x, and that helps some. We think some of the pain may just be from laying in the hospital bed all last week.

He's frustrated with the bag situation as well. I guess no matter how much you know ahead of time and try to prepare for what's coming, it can be really tough to get your head around the fact that your body has been altered and works differently now, and you've got this bag on your belly that collects your poop!

How about nightmares? He's been having frequent nightmares since we got home...could that be an after-effect of the anesthesia? He also says he has an icky taste in his mouth most of the time, and food doesn't taste quite right anymore. Like some things taste like they need more flavor or maybe some salt, but way too salty at the same time. He's down to 20mgs of prednisone, and he's still taking zoloft and vicodin, but nothing that he wasn't taking before surgery.

Thanks for letting me throw all these questions out there! We both are just so ready for him to feel good! Of course he feels better now that the UC pain is gone, but the healing process is still ongoing.
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Started Digestive Advantage Colitis formula 7/16 - hoping for some relief!
1/11 - some of the meds are hit and miss at this point. Back on Prednisone for the 4th time - can't stay in remission without it now. Think he has stopped the fish oil, Digestive Advantage (although he said he thought it helped)
Consult with a surgeon this week, surgery recommended
Surgery scheduled for Feb. 11
Colon removed! Jpouch surgery will come later - tapering off pred, healing from surgery, and shedding those pounds gained during all the pred induced snacking!


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/18/2008 11:33 AM (GMT -6)   
I think laying around can make anyone hurt. And the more he can get up and move around, the more it will help that gas pass.

Have you visited the j-pouch site? They have all sorts of information about the procedure and recovery, adapting to life without a colon, etc. You may want to approach their message boards cautiously; just as here, the people who are there posting are the ones having problems. The majority of people are out living their lives and dont' need the support board. Here's the link"

http://www.j-pouch.org/
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/18/2008 12:22 PM (GMT -6)   

So far his recovery sounds very normal.  The back pain could be caused by the horrible position the body is in during surgery.  Basically the patient is in a back-bend position which is not normal.  I encourage him to get up and walk.  Walking is excellent, my surgeon would not discharge his patients until they had walked one mile in the hospital.  Not being particularly interested in food is normal as is the bad taste (from anesthesia, I assume).  All of this will gradually get better.  I didn't have much residual pain from surgery so I was off all pain killers prior to coming home.  All of this will take time. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Rhubarb
Regular Member


Date Joined Jul 2007
Total Posts : 21
   Posted 2/18/2008 12:38 PM (GMT -6)   
Thanks Judy and Sue. I have been meaning to check out the jpouch.org boards, but just hadn't made my way there yet! I will definitely do some reading there as well. Sometimes it's just nice to know that whatever you (or hubby in this case) is going through has been experienced by someone else, and you're not alone.

He had been walking quite a bit at the hospital - the resident who assisted with the surgery was surprised that hubby had been out of bed and down the hall by 9am the day after surgery. Now that he's home, the pressure to walk in order to get out of the hospital isn't there, so I am trying to get him out the door for a walk today! Our weather is gorgeous, so no excuses!

As for food, the dang prednisone still keeps him very interested in it - he's hungry all the time. But the tastes being off bugs him...bugs him, but doesn't stop him from eating! tongue

Thanks for the info - I'll keep posting progress (or questions) here.
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Started Digestive Advantage Colitis formula 7/16 - hoping for some relief!
1/11 - some of the meds are hit and miss at this point. Back on Prednisone for the 4th time - can't stay in remission without it now. Think he has stopped the fish oil, Digestive Advantage (although he said he thought it helped)
Consult with a surgeon this week, surgery recommended
Surgery scheduled for Feb. 11
Colon removed! Jpouch surgery will come later - tapering off pred, healing from surgery, and shedding those pounds gained during all the pred induced snacking!


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/18/2008 7:31 PM (GMT -6)   
I had the nightmares and weird taste when tapering the Prednisone, so it might be that.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


Rhubarb
Regular Member


Date Joined Jul 2007
Total Posts : 21
   Posted 2/21/2008 8:50 AM (GMT -6)   
Thanks princesscolon - it might be the same thing...he hasn't said anything about nightmares for the past few nights, but he says things are still off as far as taste. Hasn't slowed him down in eating though! LOL It's only been a week and half since surgery, and he's supposed to be on a low fiber, low residue diet, but he's been eating pretty well, and so far no problems. He makes me nervous, but he assures me he is chewing everything very well.

Sine we've been home I am seeing great improvements in his mood, how often he's awake, how much energy he has etc. - it's great! I think I'm starting to get my hubby back! He got his staples out yesterday, which made him feel much better - the staples, especially on the largest incision, were starting to irritate his skin and he had red marks around each one. No infection, just irritation! I'm so pleased that he has done so well so far - we had so many terrible experiences and setbacks with the UC over the years - it was always two steps forward, three steps back.

Last night I told him that if it's nice weather tomorrow (now today!), we really need to get out and walk some more and he agreed. He's lost about 5lbs since the surgery, which is great, and he will taper to 15mg on the pred on Saturday. I will be sooooooo glad when he's DONE with prednisone!

Just wanted to give an update - thanks for the support, answers etc - as many have said, this forum is a God-send! I hope our experience with surgery might be helpful for those who might be considering going that route. So far so good, and I will continue to post progress (and setbacks if they happen, but I'm really hoping I won't have any to report!).
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Started Digestive Advantage Colitis formula 7/16 - hoping for some relief!
1/11 - some of the meds are hit and miss at this point. Back on Prednisone for the 4th time - can't stay in remission without it now. Think he has stopped the fish oil, Digestive Advantage (although he said he thought it helped)
Consult with a surgeon this week, surgery recommended
Surgery scheduled for Feb. 11
Colon removed! Jpouch surgery will come later - tapering off pred, healing from surgery, and shedding those pounds gained during all the pred induced snacking!


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 2/21/2008 9:06 AM (GMT -6)   
That is great news!!! Hurray! Thanks for keeping us posted.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


Rhubarb
Regular Member


Date Joined Jul 2007
Total Posts : 21
   Posted 2/23/2008 3:58 PM (GMT -6)   
Grrrr....well, the past two days have not been so good. I swear, it's like the ghost of ulcerative colitis is haunting us - hubby is wiped out again, has pain after eating, sleeps 10 hours, wakes up, eats, takes meds, goes right back to sleep again. He has once again become a permanent fixture on the sofa. :(

I have no idea what to attribute this to - he was doing so well, had more energy, feeling better, and now he's back to being so tired and feeling yucky - he had to skip his uncle's funeral yesterday, and we just canceled the plans we had for today as well.

All I can figure is it's either -
a) part of the healing process and adjustment to an altered digestive system
b) he felt so good he started adding foods he shouldn't have - or just too much too soon - prednisone still has him hungry all the time
c) lack of walking - the weather has been bad for the past few days, plus he felt yucky
d) tapering the prednisone - he's been on 20mg for a week after months of 35mg

I feel like such a whiner today - but I am SO SICK OF THIS! I want my husband back, I know he wants his life back! I know and expected healing to take time, but after such a great start, having a few days that are so much like 'the old days' is really, really frustrating.

Blah - I just needed to vent. I know no one understands like you guys - those of you who have been through this and the spouses/family members who love and care for a loved one. It just makes me feel so helpless and frustrated sometimes. mad

Thanks for reading my rant. eyes
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Surgery scheduled for Feb. 11
2/11/08 - Colon removed! Jpouch surgery will come later - tapering off pred, healing from surgery, and shedding those pounds gained during all the pred induced snacking!
Ileostomy is working well - I think we might be getting our lives back!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/23/2008 4:03 PM (GMT -6)   

Hang in there, his recovery will be two steps forward one step backwards for several months.  Can you get him to an indoor mall, somewhere warm and out of weather where you both could walk?  The first year of recovery will be challenging, but you should note improvement every six weeks.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 2/23/2008 7:25 PM (GMT -6)   
It sounds like he is making quick progress. Thanks for sharing your accounts as it makes it seem like not such a big deal as one would think. I would try to be really patient with him and not place too much expectation for things to get back to normal too quickly. He has been battling a major disease and just went through a major surgery plus he is still on some heavy duty drugs (eg Pred). Give him time to heal and be patient; he needs time to heal on many levels so rest is a most important "activity" to get him to the next level of wellness. It sounds like you are a great supporter and he's very lucky to have you by his side through this. Much luck for continued progress through this recovery.



 
 
__________________________________________________________________________________
- 29 y/o professional male residing in Northern Virginia
- Indeterminate UC Diagnosis - April, 2006 - Symptoms were sudden and drastic - with appearance of fistula now testing for Crohns
- Completed 3rd Prednisone taper on 4/13/07 - Tapered from early January through mid-April after being hospitalized from a bad flare with anemia & severe joint pain.
- Currently in remission and enjoying life again since getting out of the hospital in early Jan 07' from a nasty flare
- 4 Colazal/day, Multivitamin, Fish oil & Primal Defense Probiotics
- Enjoy the outdoors, relaxing and spending time with family and friends

Post Edited (UMDTerp2001) : 2/23/2008 6:28:29 PM (GMT-7)

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