Long time sufferer of Crohns

[NixR]

Hi all, I was diagnosed with Crohns disease 13 years ago. I am now a 30 year old mother of two girls age 5 and 3. My crohns disease has been active for most of the 13 years, which caused me to undergo 8 operations to remove parts of the bowl. In the last 13 years I had kidney stones- caused by the crohns and was diagnosed with Osteoporosis at the age of 23. I have no iron count which causes me to always feel tired. I am currently suffering with an acute attack which forced me to make an appointment with my surgeon again. I was on every trial we could get our hands on and took Humira for over 2 years. The side effects of the Humira was too much for me to handle and decided to rather deal with the symptoms I know- The crohns disease. I have a good support system in place and even though I have people loving me and caring for me, in a way I still feel alone. No matter how many websites they visit or me explaining the pain and symptoms in all the gory detail, they will never understand fully. I have not had a good night sleep for 13 years. I don’t know if my surgeon will attempt to operate as I had so many ops done and I am only weighing 44kg. I am trying to cope but I can only be so strong for a certain time.

 

[Jan]

Hi NixR,
Welcome to the funny farm! You're not alone here.
Sorry you're having a tough time of it. It's very hard to try and get people to understand that there are both physical and psychological sides to this disease. Bowels are such a taboo subject people tend to just look embarassed if you try to explain anything to them.
I hope that you can find support and understanding here, I certainly did.

 

[David]

Hi there and welcome to the community.

Goodness, it sure sounds like you've had a tough time of it. Various questions so we can see if we can point you in the right direction:

1. How much small bowel do you have left? And which parts of your small bowel have been resected?
2. Is it just your small bowel that is involved or your large bowel as well?
3. In addition to Humira, which medications have you tried? Are you on anything now?
4. Have you had your vitamin B12, vitamin D, magnesium, and zinc levels tested?
5. What are they doing for your osteoporosis? Are you on any medications for it?
6. Are you on any special diets such as exclusive enteral nutrition or TPN?
7. What specific symptoms do you have?
8. What are they doing for your iron deficiency? And what specific levels have they tested for it?

Let's start there. I know that's a lot, but I truly believe the collective knowledge of this community can help.

We're here for you.

 

[Angrybird]

David has got things covered question wise but I did just want to say hello and welcome to the forum. I am sorry to hear that you have had such a tough time of things with this disease.

AB
xx

 

[NixR]

Hi David,
To answer your questions, the Crohns is active in small and large bowel, mainly on the right side and where the large and small bowel connects. They have resected Cecum, Appendix, Ileocecal Valve and large amounts of the right large and small bowel. I had kidney stones removed which was caused by the cortisone treatment. I have taken Cortisone, Fleximab, Humira, Asacol, Remicade, and now currently on Imuran.
I had all my levels tested and are taking vitamin injections twice a week. I have also gone for iron IV Treatment.
I did take calcium tablets (Can’t remember the name) but with my absorption level so low, it is not having an effect. I have started to do very light exercise to try and strengthen my bone structure and try when I have time to sit in the sun and bake like a reptile to absorb Vit D in the natural way.
I am on a soft diet, but with the bowel wall thickened the bowel is now narrow and I struggle to eat. I have taken special supplement shakes, but I cannot keep it in as it makes me vomit. My symptoms are cramps, acute abdominal pain, diarrhoea 24/7, migraines, joint pain and fatigue. Yesterday I blacked out because of the pain level, and with my mom being a radiographer she took me straight for a CT scan. They also put a drip up with vit and min to try and give my body a boost.

Hi Angry bird, :congratualtions:
Congrats on your pregnancy. I have two little girls of my own and they are the strength I need to get up and go on. How is your Crohns reacting to the pregnancy? Do you know the sex of your baby? Is this your first baby?

Hi Jan,
Thank you for the smile you gave me with "Welcome to the funny farm". It is great talking to people who knows exactly what I am talking about.

Question to all?????:boring:

How do your loved ones cope when you have a severe attack? Do you play open cards with your partner about the pain and suffering or do you try and hide it as far as possible?

:congratualtions:

 

[Angrybird]

Thanks hun, yes this is my first pregnancy with a little boy and my crohn's has thankfully been completely settled throughout. To answer your question my hubby has always been very supportive when things are bad, I don't hide the pain from him on purpose but I think you get so used to living with it that it becomes your new normal and you then do not always fully communicate how you are feeling. He has now learnt other ways of telling if things are not right with me.

What dosage of the Imuran are you on? Have the docs ever mentioned about giving you food and nutrients via a tube to try and give your tum a rest?

 

[NixR]

Hi there, I am on 150mg of Imuran. I was hospitalised in December to receive food through a tube, needless to say I did not gain weight. My fiancé is new to this dealing with Crohns. He feels frustrated because he cannot take the pain away. I feel guilty with times for having the Crohns because his life has to be placed on hold with times due to my symptoms. I am considering hiding the pain from him as I do not want to burden anyone. Having a baby is the greatest gift. When I am having a bad day I just look at my two girls and then everything seems worth it. How has your Crohns been since you were diagnosed. Any operations?

 

[Angrybird]

I have had more downs than ups since diagnosed mainly because meds would work a while and then I'd have an allergic reaction to them. Luckily I have had only one op in Sept 2011 and they removed 40-50cm of my bowel in the usual place where the small meets the large. I got to the stage where I thought I would never be able to have children due to my health so this baby is a true gift. Whilst it is tempting to hide things from our loved ones so try to avoid this, it could lead to your partner feeling more isolated from you and of not any use, I would bet that they would never once consider you a burden. Are the docs looking into any other meds for you at all?

 

[NixR]

Hi, the doctors have put me on every medication and every trial available. My Crohns always re-appears where the small meets the large bowel. For some reason my body rejects the drugs and I have reactions to it as well. The one drug that helped me for a while was the Humira injections, but the side effect was too much for me to handle and caused me to be admitted into hospital. I decided to stop the Humira and deal with the illness and symptoms I know.

 

[David]

You poor thing

Do you know what specific vitamins/minerals they're giving you injections of?

 

[Franceshop]

hello, i dont have a dx yet and may not get one but it doesnt mean i cant offer support! my 2 youngest kids are 4 1/2 and 3 in march, they are what keeps me going too! there are lovely people on here and i'm sure you'll feel better just knowing you have people who can understand what your going through! xxhugsxx

 

[NixR]

Hi David,
I am not sure which vitamins and minerals are injected into me. I do know one of the injections is magnesium

 

[NixR]

Hi Franceshop,

Thank you for the support. Even though I have been dealing with this illness for 13 years and it is part of my life, a part of me, it is still difficult to come to terms with it. It feels like I have lost so much because of this disease and sometimes wonder why I was chosen to live with it..

 

[Franceshop]

hey, how are you today? how do you manage with your illness and having a family? i just do what i can when i feel at my best and leave stuff when i cant do it, i have learned whats important in life and have as much fun with the kids as often as i can.
its not fair you have to deal with your illness, all you can do is your best. take care xx hugs xx

 

[doctor's mom]

Thanks hun, yes this is my first pregnancy with a little boy and my crohn's has thankfully been completely settled throughout. To answer your question my hubby has always been very supportive when things are bad, I don't hide the pain from him on purpose but I think you get so used to living with it that it becomes your new normal and you then do not always fully communicate how you are feeling. He has now learnt other ways of telling if things are not right with me.

Congratulation Angrybird! Are you currently taking any maintenance drugs?

 

[doctor's mom]

Hi all, I was diagnosed with Crohns disease 13 years ago. I am now a 30 year old mother of two girls age 5 and 3. My crohns disease has been active for most of the 13 years, which caused me to undergo 8 operations to remove parts of the bowl. In the last 13 years I had kidney stones- caused by the crohns and was diagnosed with Osteoporosis at the age of 23. I have no iron count which causes me to always feel tired. I am currently suffering with an acute attack which forced me to make an appointment with my surgeon again. I was on every trial we could get our hands on and took Humira for over 2 years. The side effects of the Humira was too much for me to handle and decided to rather deal with the symptoms I know- The crohns disease. I have a good support system in place and even though I have people loving me and caring for me, in a way I still feel alone. No matter how many websites they visit or me explaining the pain and symptoms in all the gory detail, they will never understand fully. I have not had a good night sleep for 13 years. I don’t know if my surgeon will attempt to operate as I had so many ops done and I am only weighing 44kg. I am trying to cope but I can only be so strong for a certain time.

Welcome to the forum! Sorry about your sleepless nights and hope you'll start feeling better soon. Maybe imuran will be your magic pill when it kicks in completely.

 

[Jim (POPS)]

Hi, welcome to the fourm. I found out that i had crohns at age 62 right when i retired. I have had 3 operations in the last year. I feel like my life is over because al i can do is lay around. There is one thing i'm happy for. I use to be very mad that i got this at retirement age and then i joined this fourm and saw all the young poeple that have had it for so long and what they have been through. Now i am glad that i got it at age 62. I don't have to get up for work, i have no responsabilitys at all but sometimes i can't find anything to be happy about. I pray that you find good health and find life fun again with your 2 kids.

 

[Angrybird]

Congratulation Angrybird! Are you currently taking any maintenance drugs?

Thank you! I am on 75mg of 6-mp a day, the docs seem surprised that this is all I am on considering how settled my tum is. I put it down to the pregnancy hormones.

 

[NixR]

Hi there, I had two weeks of hell. Was in bed with the worst abdominal pain. I went to my doctor and my surgeon. The Crohns is spreading now into the colon and my intestines are full of ulcers. My surgeon will not operate as I am to thin,weak, had to many ops already. I am at a low point.

 

[Angrybird]

So sorry that you are having to go through this have the docs said what they are willing to do for you?

 

[NixR]

Hi there,

The doctor is now looking into any trials available. I am seeing another doc tomorrow for a second opinion. How's the pregnancy going?

 

[NixR]

Hi Franceshop,

Having kids was a blessing. They make me laugh even in the times that I am in pain. My oldest girl turned 6 yesterday and she is a real caregiver. She will make my bed, bring me a pillow, give me a massage or sometimes just sits with me.

 

[Angrybird]

Hi there,

The doctor is now looking into any trials available. I am seeing another doc tomorrow for a second opinion. How's the pregnancy going?

I will be keeping fingers crossed for you, just to confirm have they ever looked into Tysabri at all as I know a couple of folks here have been on this for crohn's?

I have now had my little piglet,he is in fact 2 weeks old today,whilst early he weighed a respectable 7lb 14oz and so far has been a very good baby.

 

[Karen]