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SMW
 SMW
(@stirringwaters)
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Joined:1 month  ago
Posts: 4
July 13, 2018 6:27 pm  

Hi

I had a bowel resection on June 6, 2018. It has been a very hard start to the year. I was diagnosed with the H Pylori virus in January after having been so sick with vomiting for three months prior. This lead me to a hard to get rid of yeast infection that pushed me to my limits and eventually I turned to a sugarfree, dairy free, gluten free diet and soon I was feeling on top of the world and actually loving food again. It was no longer my enemy. Having been through so much, I decided a much-needed vacation was needed and went to Mexico in April. When I came back from my trip is when I started feeling ill again. My Dr put in a referral for a specialist for a colonoscopy.  But things continued to worsen for me and eventually I was eating very little and wasn't getting the proper nutrition. To summarize, I ended up going to emergency rooms in several hospitals twelve times. Mercifully, the specialist was able to get me into surgery sooner and I wouldn't need to wait another month.

 

It's been hard. I hated being in the hospital. I was in there for 23 days and I can't even believe it was that long because it felt like a week. But hospitals are very scary at night. Not to mention the pain meds they were giving me were messing with my head!

I've had to go back to emergency twice since my surgery due to infections developing. Finally, the stoma seems to be where we wanted it to be a few weeks ago. Recovery has been very very slow for me. And it's a temporary solution as they will be putting me back together in a few months. That also terrifies me to have to go through another surgery and go through all this pain again.

I'm really happy to have found this forum as I feel so alone in this and I am looking for support to get me through the tough times and learn from others :)

 


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VeganOstomy
(@veganostomy)
Admin
Joined:4 years  ago
Posts: 1623
July 13, 2018 10:27 pm  

Welcome to the forums, SMW! 

You've been though so much, and I hope things will get easier for you soon! You definitely found the right place 😊 We are looking forward to seeing you again! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SMW
 SMW
(@stirringwaters)
Registered
Joined:1 month  ago
Posts: 4
July 14, 2018 1:32 am  

Thank you for the warm welcome :)

 

To this, I will ask some worries that have been on my mind.

1. I'm having a hard time getting to sleep at night (could be anxiety) but it seems like at times I am only able to sleep for an hour at a time. It's been pure torture because I would love to be sleeping through the night. Is this normal?

2. June 4th was my surgery so it's been 5 weeks. Is there an average of when people no longer need pain medications? I know this is very individual and I seem to be a very slow healer this time around, but I also want to hang onto some hope of when I can look forward to getting back some of my old life back. At least be able to drive and prepare meals on my own and be more self-sufficient.

3. Does anyone else have experience trying to be on a low fibre, dairy free, gluten-free diet? There is so much information that contradicts out there and it's so very confusing. I am looking into getting referred to a dietician to help me meal plan to ensure that I am getting everything I need nutritionally.

Thank you in advance for your responses.


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john68
(@john68)
Registered
Joined:11 months  ago
Posts: 986
July 14, 2018 3:24 am  

Hi SMW, On the sleeping issue, I had trouble sleeping for months afterwards I put it down to being in hospital with the lights, activity and machines bleeping etc. Also being aware of having the bag was partly to blame. but it does past and now I get up once to go to the bathroom.

On the second question, After being in hospital for nearly 3 weeks I was back home still under weight and on some light pain killers, my recovery would have been over 3/4 months and every day was an improvement and was able to add doing normal things into every day during that time. so don,t try to climb the mountain in one go as small steps will get you their.

I was on the types of diet you list prior to my surgery and for a short time after the stoma and was able to get back to normal eating by introducing new foods a little at a time, I am a crohns patient but I hope some of my answers are of some help. :-) 

ileostomy 31st August 1994 for Crohns


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SMW
 SMW
(@stirringwaters)
Registered
Joined:1 month  ago
Posts: 4
July 14, 2018 7:50 am  

Thanks for your response, John!

It helps to be able to search and find out other's experiences to be able to connect with others who know what I have been through. Although slightly disappointed in the recovery time, I think I need to learn patience. I just want the whole ordeal to be over with and my life to start over again. I have lost all of my independence which has been so hard to me. I feel guilty all the time because my mom provides full-time care for me and hasn't been able to take a break. Thankfully she is retired but her whole life has been upended to be able to help me. I know an AMAZING MOM! I love her so much.

Last night I tried worrying less about whether or not I was going to be able to get to sleep. I ended up sleeping for two hours at a time instead of one hour.

Also, in the beginning, did you document everything? Meds taken, food eaten, reactions, etc?


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john68
(@john68)
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Joined:11 months  ago
Posts: 986
July 14, 2018 8:07 am  

No doubt we can feel really bad when others have too look after us and even more when its our parents. with me it was the same had to spend a period back with my parents but its what they do and in time you will be returning the favour. Going back to the recovery time while it was 3/4 months that time did pass quickly and boy does life taste good when you can enjoy it. Yes I did keep a list on what I was eating so if I had a problem I had an idea of the culprit.

ileostomy 31st August 1994 for Crohns


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Marcie
(@shulmjs)
Registered
Joined:11 months  ago
Posts: 1417
July 14, 2018 11:15 am  

SMW, Welcome !!  Your on the normal range indeed. Checkout :about me" on the members and you will feel NOT totally alone.  Some have spent a year in the hospital, and repeats. I spent a good 7 months.. and repeats..  Some just get up after healing and go abut their business.  I thin if you just relax and get well you will be one of them.. I could not sleep either.  My Dr, put me on some medications to relax me, so I could get my mind calm and get my "so called ducks" in order-- I found once the medication (to make me sleep) proved the best.  Don't be afraid of this for the time being.. Talk to your Dr. NOW!!  A healthy mind is a healthy body.  Rest/sleeping is the key.  I was in shock myself with all I went through etc...… Don't know if you at that stage or not.  But sometimes a little help from medications for a time makes all the difference. Start low…… I do--  You have a road of recover ahead of you (yo u just started)and then the pouching systems which we all can help you with here.. Having Eric and us it should be  a breeze--wish I had this blog back 4 years ago!!  Makes a big difference TRUST ME !!!!!!  So try to relax, eat well, smoothies are good. Stay hydrated!! Just do the best you can for now and the future is yours!!  I am sure that you will be on vacation again and enjoy it with no fears!! Your friend in Ct.  Marcie :-)  

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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sjlovestosing
(@sjlovestosing)
Registered
Joined:4 months  ago
Posts: 73
July 14, 2018 6:54 pm  

Hello SMW! I am a newbie myself, though my circumstances for having a permanent stoma are different than yours. I had colon cancer and had to have my rectum removed. It does take a while for things to heal, so patience is a must. It has been eight weeks and I am slowly getting back to where I was. I was quite dependent on my husband for a time. He made dinners, lunches, and breakfast for me, did laundry, washed and dried dishes, and did grocery shopping for a couple of weeks. He helped me with replacing my barrier ring and bag for the first three weeks. In fact, he is still better at it than I am - though I have been doing it for a while without any help.

John and Eric have been a great help to me as you have also discovered for yourself.  They are encouraging and very informative as are so many of the ostomates on this forum. 

So welcome and may your experience be as good as mine.

Stella


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Linda Knelsen
(@dlkfiretruck)
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Joined:12 months  ago
Posts: 153
July 15, 2018 3:01 am  

Hi there SMW...AKA...stirringwaters, you, have stirred my heart.  I know that I tried not to think about what I went thru when I was finally out of the hospital after 13 1/2 months, 7 emergency surgeries, in ICU with the lights on 24/7 for months, 6  months in one hospital closer to home and six much further away. I saw my hubby for four hours apx. on Saturdays for six of those months, and one of my sisters would come up Thursday nights for three hours. She drove 1 1/2 hours each way to do so. Much, I understand. Waking up three different times to a nurse watching me sleep and the crash so close to the side of my bed it was touching. Being so far away from my family, my hubby drove to me five to seven or so hours away each way, depending on traffic. This is not a mine is bigger then yours story, but an, I feel your frustration and pain note...based on my others, it may be long. Sorry, expand your screen it may help When I was finally released I could not even open a can of soup to save my life let alone brush my hair. It was never offered and I never thought to consider physio. Sleeping was a huge issue. If I got one hour straight I was happy with that. I slept with ear plugs in, and an eye mask on, I did not have enough fat on my body to be comfortable or to make the light go away when I closed my eyes. That was in 2009. I still sleep with ear plugs and when the morning begins to brighten the room the mask goes on. I drank a double tea bag of four hour brewed sleepy time tea,( I still do occasionally, things did improve some) do not squeeze the bag ( it makes a bitter cuppa) and start with one bag, one hour before bed. Only drinking chamomile in the afternoon. Do not rush driving it can be hard on your incision areas. Because of my long illness, I waited a year. I would say two to three months is good, depending on alertness and strength. Check with your GP. Sleeping meds. made me feel jittery and when they did work, I never remembered how I got to bed. I do not like having that knowledge. My ileostomy was installed a very short time before my hubby died of the pancreatic cancer he was diagnosed five months after I got home. It was the hardest thing to deal with. He was too ill to help with much but a comforting hug. Hug your parents. As John68 says, there will come a time you can help them. Shut off the phone. Let your friends  know that you may be sleeping and to not be offended if you do not answer the door. I taped a paper to the front door and put a pencil at the base of the door frame so they could write down there name and time they are there. No one can see it from the road if it is behind a screen so no one will likely snoop around. This takes the guilt off of you when you can not get to the door or you are claiming your rest. A good friend will understand. Cater to your rest and try not to stress, taking one minuet at a time is great and just fine. Sometimes I have taken ten seconds at a time. I would say out loud...I am okay so far.  It is vital for healing. I eventually discovered Melatonin to help me sleep also. I still take it and I have my doctors blessings. Jaimeson was the brand that worked best for me so I could reclaim the three to four hours I get a night.Because my doctor knows I take it he okays if I take it when  I am back in the hospital. Catnaps are marvelous. A catnap is, you are resting your "body" fully with deep slow breathing, in through your mouth out through your nose, hands facing up. I concentrate on tightening my muscles all at once from head to toe and then as I relax and breath I let them go one area at a time. I did not realize that I was getting muscle cramps at night until my doctor suggested I try taking calcium and magnesium for tightness. When I was able to relax even more in bed due to muscles not being so tight, sleep changed from being aware that I was laying on a mattress and uncomfortable, with the blanket weight on top of me, to not being aware. I changed my blankets also. I treated myself to soft fuzzy sheets and a lighter equally warm top blanket made a difference also. Because I had so much anesthetic, I felt the air was too still to breath, to sleep, so I have the fan on over my bed when I sleep, just on low. It helps to move the air around mimicking a gentle breeze.I sleep with socks on too, they helped with foot cramps and warmth. I lways felt cold and was not aware of it, for whatever reason, until I actually warmed up and stayed that way. Things settled down eventually.

Pain is an issue due to scar tissue and further disease, surgery and complications of other health issues for me. It is normal to be frustrated with it. It is also a very exhausting symptom for your body and your brain to work out. How long it lasts or how often it returns varies from person to person  Listen to your body, it has a lot to tell you. Also, remember, when you had your surgery, they had to work deep inside you and move things around. Bruising can occur and your muscles were stretched. You were moved around while you were under sedation, do not be surprised if your back shoulders and neck hurt too. Maybe see a chiropractor if you have one. A message therapist can do wonders for your muscles and nerves and circulation, they can work on your lymphatic system also. A massage should be relaxing and therapeutic at the same time use a pillow to protect your tummy some. Tell them about your surgery and your diagnoses and your incision. They will work with you. Take a hot water bottle to bed and keep your feet warm. Do not push yourself. Be gentle. Take a long hot bath when and if  you can before bed. Your body will adjust and turn to normal eventually...whatever normal is. It is somewhat easier for the body to deal with cold then it is heat, I used to think an electric blanket was the trick, but waking up too hot was actually exhausting and unsettling. I know they are made too, but I would not recommend sleeping with it on. Your bag may leak and cause problems. If you have to take something for pain, do not be hard on yourself. It is fine to do that. Just be careful of the old narcotic issues and remember, not everyone has an addictive personality. Sometimes fighting thru the pin is worse then the pain. You are in control. I have the H.Pylori bacteria in my stomach. It is not nice at all. I drink lots of milk because of it and tons of water. I found this was key to my digestion also, along with well chewed food.  I eat very little red meat but a lot of easy to digest fibrous foods. I eat well cooked beets and a lot of greens, but roast them to help keep as many nutrients as possible in them. Sweet potatoes are good too.I may bake three or four days worth at a time. What I do not use gets frozen and used in home made soups or stews. Left overs are great for this. After surgery appetites can be smaller or picky. On my good days I will make a huge meal and then place it in tins from the dollar store for the days I struggle. This insures no fast food meals which can often cause stomach issues later for me.  Include garlic in your meals, when it is roasted it is not pungent, but sweeter. It is very good for your immune system. I eat yogurt  every day. Fish is my friend when it comes to meats. I bake it, broil it and steam it. You will figure out which you enjoy the most. Have tartar sauce with it. Herbs are great also. I found fish much easier to digest and it does not cause gut pain for me at all. Soft fruits, baking the harder varieties...apples, pears...  I eat very little bread as the yeast is a killer in the pain and gas department. The amount of bloating I get when I eat one slice of bread sits in my upper gut area and never moves unless I perform serious acrobatics. Keeping a food journal is a great thing to do along with the your pain and what you may take for the pain. Some meds. caused problems when the oddest ones did not. The time gut symptoms set in was also vital to figuring out what worked and what did not.  every one is different and our guts are all different too.  I really found that making fruit smoothies using mostly yogurt and frozen fruits works well for me. It is easy to make a blender full and have it in smaller doses if need be. The frozen combo of fruits I love are strawberries, banana, blueberries and papaya. Seeds can be nasty. I also sprinkle in some Turmeric as it helps with inflammation. Too much will make your smoothy chalky feeling in your mouth. I use little juice in my smoothies as I prefer them thicker and colder.   When I am too tired, the blender full trick helps and it has been good over three days for me. They are easy to digest. Satisfying also. Add some honey. You can add 1/2 fruit and 1/2 yogurt, if you add juice do it in thirds, but I find it irritates the pylori. If I need it thinner I will add milk instead. I have added beer and even wine couple of times                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                             . Makes for a nice afternoon. Don't tell my pastor! LOL.  Because potatoes made my output too thick, I added stewed heated tomatoes or sour cream on top of them. I use fast cooking oats when I make porridge as they do not requireas long a cook time and I find them easier to digest. When I dumped bread, I turned to crackers, there is a wide variety of them. I will make a plate of cheese and pickles and some chicken to have on crackers and some cream cheese. If my output is too thin, I treat myself to dill pickle potatoe chips. V8 Juice is wonderful if you can tolerate it. I add extra salt and even pepper. I can't eat much in the way of raw foods, so this is a great bonus. I eat about four or five smaller meals a day plus a snack here and there. I can eat nuts, but the softer ones like pistachios and cashews but I must chew them down very well. For the raw foods I eat they are the watery ones, cucumber, some lettuce, zucchini, I make my own Zoo sticks and bake them...I like a yogurt/ sour creamy cucumbery oniony sauce with it. Now I a hungry. When I have to increase my appetite, I watch cooking shows.

Try and go for even a short walk every day. I had to take one driveway at a time, mine was the worst, and carry my cell with my in case I had to call my son to come and get me when I have walked too far on a bad day. One time it was half way around the block. I kept a journal as it allowed me to vent my frustrations when no one seemed to understand or had time to listen. I discovered very quickly that very few people actually wanted the truth when they asked how I was. It has become easier to lie and say I am fine, than to deal with the disappointment when someone was not listening and said oh, that nice after a really bad painful week. Being a widow, I gave my son permission to read it if he wanted, as it may help him understand all the things that made me tired without my having to explain it and hope he understood. It also gave him greater understanding when he discovered why I hated asking for help.

Most of all, do not put too much pressure on yourself. On your bad days, stay comfortable, rest, drink your fluids  and look after your needs the best you can. We are here to let you know that we have all needed help and sought out this sight of Erics. His videos are informative and interesting and educational.  Read all you can but remember to shut it down at night as regular a time as you can get and do not rush out of bed in the morning because your awake. Read a good book. Relax between the sheets and let your family help. Take your time changing your bag and have a phone handy if no one is around. It is okay to ask for help. It lets your friends and family realize that you need them right now. Asking for a ride or a good friend to pick something up is a nice way to help them feel included in your experience. Our men do not mind helping with things, some may not rush to it if they do not realize your need. Be sure and communicate to them that you are feeling rather dry and lightheaded for instance and would appreciate their help. A fair deal of the time, our men may not know how to help or what your need is. Most often women are the nurturer in the family, you know, the one gently touch a childs cheek, kiss the forehead to test a fever make sure you drink lots of water with the aspirin...it is a kind of learned behavior. Men may say, did you hurt yourself and toss a bandage in your direction. A women will cuddle, clean it up put on the band aid and kiss it better. It is not that they are incapable of that tenderness, as we know they are, but they have had to be tough there whole lives and just may not know what your needs are and need you to tell them. They are most always eager to help. My husband was sick and the most precious thing he did in my recovery was the morning I woke up exhausted, needed a shower, cried through  it, then he came and had the towel he threw in the dryed for me, placed it round me, sat me down and proceeded to dry me off, then blow my hair dry. It was the most precious beautiful thing he did for me. 

You are a survivor, be encouraged and if you have questions ask. If you need help ask. I have a list of people who said...I can drive you, I can bring you a meal, I can clean a bathroom and so forth. Write them down let them help. If you do not tell them you need something they will not guess.  I know my case if very different, but I hope I have shed some light on something for you. The body is an amazing thing, try and listen to it. Heal well and do not be too hard on yourself.

Linda


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Linda Knelsen
(@dlkfiretruck)
Registered
Joined:12 months  ago
Posts: 153
July 15, 2018 11:06 am  

PLEASE...allow me to apologize for this drastic long post. For whatever reason, my computer froze about 2 am.  I shut it to try and to get some sleep, as I see this morning it is  posted  before I was able to edit it. I do try to edit and shorten things I add here and I feel very bad about this. I know how tired and sore my eyes can get reading from the computer and I do not like that for others as well. My apologies to Eric also for what seems like I am doing my own hijacking here. 

Very sincerely,

Linda


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SMW
 SMW
(@stirringwaters)
Registered
Joined:1 month  ago
Posts: 4
July 15, 2018 1:11 pm  

Thanks so much for your replies, they are all helpful. I am feeling so overwhelmed at things at times because of the intense pain I seem to always have. I often need to read things over to absorb it as my thinking is not up to full steam yet.

Linda, thank you for sharing and no worries about the long post. There was so much information packed in there.  I also wanted to thank you for the perspective on my own journey and how some have had it much worse. It helps me to balance my thinking. While this has been the most traumatic for me, it hasn't been for so many others who are dealing with so much more. It helps me to feel thankful and grateful for where I am at.

So loud and clear, be kind and patient with yourself :)


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Dona
 Dona
(@dona)
Registered
Joined:1 year  ago
Posts: 497
July 15, 2018 7:55 pm  

Hi and welcome SMW,

You asked a question about documenting whats going on with you.

That is an excellent idea!  I did that for about two years until everything became kind of routine.

Everything is new to you and its very easy to forget things so..

write it all down in a notebook.Its amazing how confusing this can be especially when you are just starting out. This is especially true if you are trying out different products and brands of things.

I dated each time I changed my appliance. Write down the date, what your old one looked like ( was it leaking, starting to leak, looking O.K. still? etc), how it was feeling when you changed..skin feeling prickly etc. I also wrote down what type I was using and if anything had changed ( like using powder,  barrier ring, skin prep) ..anything and everything..write it down.

 

Also make a clear note of how long you went between changes. You will begin to get a feel for it.

Also if you has a leak or pancaking or anything that might effect you, make a note of it. What you ate is important too..if it was something you were trying for the first time.

I saved the wrappers from the items ( and taped them in the book) or made note of exactly what I used. Like a scrapbook.

Pretty much anything that seems meaningful to you. Write it down and sort it out later. Including, how you are feeling. Give yourself permission to be obsesive about it!

Make note of any medications you are taking,  time of day of the  change, etc.You never know what might become important.

Patterns do emerge. And if nothing else it gave me a since of control over the process. 

You will get there.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Zvitusk
(@zvitusk)
Registered
Joined:1 year  ago
Posts: 380
July 15, 2018 9:49 pm  

Hi.

Welcome aboard the good ship Lollypop. We are here to advise you. 

1.YOU ARE NOT ALONE. 

2.WHILE YOU ARE UNIQUE,  WHAT'S HAPPENING TO YOU ISN'T. 

3. BEEN THERE, DONE THAT  is our mantra.

4. We can't read your mind. You need to talk out loud ( via internet ) to be heard and understood. 

5. You don't know it yet,  but we love you. 

Z


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sjlovestosing
(@sjlovestosing)
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Joined:4 months  ago
Posts: 73
July 16, 2018 9:01 am  

Great advice Dona and Z -  especially for us newbies! 

Stella


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