I'm new to this sight, and have so far found tons of postings that I relate to. I had UC for five years, starting when I was 20. By the beginning of this year, I was so sick, I couldn't go more than 30 mins without rushing to the bathroom. The only thing that kept me able to deal with the pain so I could continue to work and go to school was, unfortunatly, medicinal marijuana (yay for living in CA). But that was obviously not a permanent solution. My doctor finally suggested surgery after we ran through the gammit of cures. The worst for me was the prednisone. Being young, the side effects were a major hit to my vanity. (i.e. round face, acne, back hair, etc.) Luckily for me I have a wonderfully loving a supportive boyfriend who loved me despite all this.

I was pretty proud of myself for continuing to do well at work and school (I aced calculus when I was smoking pot before class and during the brakes!), despite the constant pain. However, my pride ends there. As soon as my doctor mentioned surgery, I had a break down that I fear I may never recover from. I was in complete denial all the way up till the drive to the hospital. I swear, I was looking for a window to jump out of when the anesthisiologist walked in. (Luckily there wasn't one. Why no widows in the O.R.? Too many escapees?) Anyway, I had the colonectomy, and woke up with my new friend, the iliostomy pouch.

At first, I was really happy. In the hospital, I immediatly felt much better. The UC was gone and my pouch was working fine. However, I was home for only 3 days when the cramping came back, full force. Even my medicinal drug habit couldn't contol the pain, so I was back in the hospital. I had a blockage, which required they insert an N.G. tube. (For those of you who have not had the pleasure, this is a tube shoved up your nostril, down your throat and into your stomach to suck out the contents). If I had known what they were about to do, I probably would have tried to escape again, but I was blissfully ignorant, until the nurse brought in the tube. The process of getting it in caused me to vomit several times, and I continued to vomit the whole next day until my gag reflex subsided. For those of you far enough away from the surgery to forget how painful it was that first week to even take deep breathes, vomiting was NO fun. I busted several staples in the process, and those remaining left behind bruises. Long story short, I sat in the hospital with that damn tube up my nose, with zero food (not even liquids) for 7 days. We were one day from going back into the OR to clear the blockage when it finally cleared itself.

Once home, I experienced several more blockages, but soon figured out the best way to clear them: cry. Seriously, crying is the key. Or laughng really hard. These stomach convulsions that we try so hard to avoid post surgery (because of the pain) is excatly what is needed to clear the blockages.

My next hurtle was getting used to taking care of the bag on my own. Once again, my wonderful boyfriend was incredibly helpful, but we still had many problems with leaks. Another major hit to my vanity, I must say. I was having to change the bag so often that the skin underneath was raw and bleeding. I had the pouch for just over three months and I can say I was just getting the hang of them, when it was time for my reversal.

I was so freaked out about the idea of heading back to the hospital, that I puked in the planters on the way in. (lovely!) Once again, surgery went fine, and while in the hospital, I was pretty happy about the outcome. Things slowly began to work and I was sent home after 4 days. The problems didn't start until I had been on solids for a day or so. Since then, I have had the constant urge to void, even when its been hours since I ate. I can only hold the urge for 45 mins at the most before having to run to the bathroom. Several times I haven't made it in time, and have taken to wearing diapers around the house. (Yet another wonderful stroke to my vanity!) Every 5 to 10 mins I have mind blowing cramps that leave me hunched over crying. (I've experienced several in the time its taken me to type this.) And, as a result of going so often, the infamous butt burn has also been debilitating. I've got all the common fixes. Doing the brat diet (bananas, rice, aplesauce, no toast for me because I'm gluten intolerant), eating metamucil wafers, using baby wipes and preparation H when I go to the bathroom, staying completly away from dairy and spicy foods, etc. I went to the doctor yesterday to remove the staples, and he also suggested I take Lomotil to help with the frequency.

I've been having a pity party for myself the last few days since returining home. I feel like I've done so much, been through so much (I spent my 25th b-day in the hospital), and yet I feel like I'm back to square one, with the cramping and the pain and the many bathroom trips. I can't even get any sleep, which is also not improving my mood. My only solace has been reading the forum postings about others in the same boat, or even better, others who were in the same boat and have come through it all right.

I'm trying hard to keep the faith, to see the long road, the light at the end of the tunnel, blah, blah blah. It's just so hard to think that I will ever feel well again. I feel so badly for all the stress I've put my poor honey through. (While Ive been going through this saga, he's been studying for and taking the bar exam for law. They make you wait nearly five months for the results and we finally find out tomorrow. Like the poor guy isn't stressed out enough!) He's been , I know it sounds corny, but my reason for living. I have to believe that we will both come out of this stronger, and can go on to get married (If we can ever pay off the medical debt Ive incurred because of all this.)

I hope my rant hasn't scared anybody off the surgery, because Ive read tons of stories on this forum that make me believe it may all be worth it. At the moment, however, its hard to beleive that it wasn't a big mistake. I hope within a few months, I wil be one of the people on the forum telling to other ranters like me that it will all be ok and that there is light at the end of the tunnel. As for now, I'm miserable and depressed and weepy. I will take any advice readers may have to end my suffering, though I fear time will be the only cure. Here's hoping it will all be over soon!

Thanks for listening.

Rachel

No wonder why you are so miserable. Poor you. First of all it takes quite some time to figure out a diet, immodium, and liquids. Do a search on this site for other suggestions but remember everyone is different.
Second, if you have that much of an urge voiding go back to the MD and see if you have a UTI (urinary track infection). You can easily get that if you had a foley cath and you do not need to have a fever. That may explain your cramping.
Your cramping may be from pouchitis. Do a search on this site for that. I have not had that so I do not think I can comment. Perhaps some people will be along to help.
It is completely understandable to feel weepy and depressed, look what you have been through. You have every right to feel bad about things and a little sorry for yourself. It is a problem if it prohibits your ability to move on. Please consider seeing an Md to address this. Some people on this forum have taken anti-depressents (they can also help with cramping)short term and long term. Some are not so favorable towards them. My feeling is that the human spirit can only take so much and occasionaly it can use a little help.
Last, there are several medications out there that are anti-spasmodics that your MD can prescribe. That may help with the cramping. Please let us know how you are doing.
Jennifer

Hey,

Things WILL get better!!!!

I had surgery a little over a year ago and boy have things improved! I had an all in one-step surgery and the recovery was miserable.

For the first few months I was going to the bathroom 20-25x a day with urgency, HORRIBLE butt burn (did you try a sitz bath?), and cramping, fatigue, etc, etc. Then I dealt with months of antibiotic dependent pouchitis.

Now after a year, I eat whatever I want, excerise, and go to the bathroom around 5-8x a day (all controllable).

Things arent perfect, but believe me things will improve slowly, on a month by month basis.

Hey Rachel, You sound like you're having a rough time and that's too bad. At least you have had all your surgeries and now recovering from this one should be the last hurdle. I just had takedown a couple weeks ago and I know how frustrating it is. Running to the bathroom, being stuck on the toilet for what seems like forever, and the sore bum, butt spasms, etc. There's usually several times during the day that I feel really sorry for myself and hate my life. And then there's the hours between that I feel better and things are okay. It's okay to feel sad, this is a big deal and it is difficult. But don't forget to look for the little things that make you happy, I go for walks outside and try to look at the trees and sky and admire the beauty of nature, and I like to watch Seinfeld everyday because it makes me laugh. I think that things will get better for you (and me!) but our bodies are confused and it really does take time for our poor little intestines to figure themselves out.
It's so great that your boyfriend has been supportive of you through all of this! You are truly blessed to have someone like that in your life.
Have you tried having warm baths and showers? I find they make me feel better, especially when I feel sharp pain 'down there' or my rectum is spasming a bit. Usually the more often I use the bathroom the more I feel like I need to go, the more my bum hurts, and the more my rectum spasms. It really is a vicous cycle. Hopefully your problems will slowly sort themselves out one by one, and you'll start to feel better soon. And I know the lack of sleep makes it hard too! I only got up 3 times last night and if was the best sleep I've had in 2 weeks. Ahhh, it's all relative. Take care! I look forward to hearing stories about how you're feeling better - hopefully in the near future.

Hi Rachel!!! Oh I hope things get better for you soon!! It is hard to keep the faith when EVERYTHING seeems to be going wrong, but I fully believe all these issues will be sorted out soon!
When I had my initial surgery, I too was right back in the hospital with a blockage. The pain was unbearable. I remember thinking I must be the unluckiest person ever!! But things got better. I have had a total of three blockages that I needed to be hospitalized for actually, but now I know the steps to avoiding them in the future. You learn what works for your pouch and what doesn't. I also had pouchitits right away (in fact I think I had it when I had my ileostomy even), and after working with a couple of medications it finally went away. This could be something you have going on right now, and you might not even know it. It is really difficult to figure it all out in the beginning but once your pouch gets working the way you want it to you will find it is easier to I.D. the problems. Right now it just must all seem so confusing.
I also experienced cramps initially when I was having mini blockages- I found that grape juice really helped move my food along better.
In addition, I too had some bladder issues post surgery that were really scary. I couldn't control my pee, and often found myself peeing my pants. I never actually found out what that was all about- but after 3 months it resolved itself. I must say though, that you could definately have urinary track infection, as they are common after having a cath. This might be something to get checked out.
Don't worry too much!!! Things will get better. Some of us transition into the pouch really easily while others have had some bumps in the road. That doesn't mean we won't all eventually have success with the pouch.
happy thoughts,
andrea