My crohn's for 20 years

[adrian mcdonnell]

Firstly, i would like to wish everyone a merry xmas and a happy new year!

My name is Adrian and i am 36 years old, even though this is my first post i have been a Chrohn's suffer for almost 20 years and my heart goes out to all suffers. I was 16 when i was first diagnosed with colitus and over the years it had developed in to Chrohn's. I have been on most medications and thankfully i have not undergone any surgery.

I have been informed that i have tried most medications to put the chrohns in rem
mission, i am currently on 'Infliximab' and would like to know anyone who is also trying this drug and there experiences. It has been working well but i have been suffering quite severly with some of the side effects such as: hair loss (all most completly), itchy rashes all over my body and blisters over my hands.

My consultant has informed me that if this medication does not work then there is no other alternative than surgery. Therefore, i would really appreciate anyone with information with regards to there experiences pre op and post op.


What limitations are invloved? Can i still take my 4 year old son swimming? How much time would i have to have off from work? Has anyone had part of there intenstine removed and stitched back together and then not had anymore problems?


I thank you in advance for all your information.

Adrian

 

[Crohn's 35]

Hello Adrian and welcome! You have come to the right place where people do share your symptoms, and concerns as well as questions. Remicade has worked wonderful for most people, and for years. I was allergic but tried Humira, and it worked for a spell. You will get lots of different opinions here because we all react differently to all meds and our level of disease is a major part of treatment.

I have had surgery 2 resections and the initial "appendicitis removal" and my Crohns is in the Ileum, LRQ. My first was a Laproscopy, way less invasive, and faster recovery. You should be able to go swimming after all incisions are free from infections (if they occur) or fully healed. Depending on what type of surgery and where it is will determine your length of time for recovery.

I am sure you have exausted all other meds before surgery, because having surgery isnt a cure, but it buys some time from your symptoms. I have always been on a maintenance drug after surgery. My first surgery was 1 week with antibiotics and a week after, I was good for over 7 years. Has your doc mentioned Humira or Cimzia?

Hope you keep us updated, glad you found us and join us! Hope you find relief and soon.

 

[uab grad student]

Welcome Adrian! I haven't had a bowel resection, so sorry I can't give you any advice on that. I am on Humira right now (just started last week) and like you, I'm hoping it will work for me and keep me from needing surgery for awhile.

Sorry I can't be of more help, but I just wanted to welcome you to the forum!

 

[D Bergy]

Welcome to the forum.

I would be willing to bet that you have not tried Low Dose Naltrexone. Many doctors are not even aware of its use for Crohn's.

http://www.lowdosenaltrexone.org/

http://www.ldnresearchtrustfiles.co.uk/docs/2009.pdf

I use it, and am doing fine. I did still have to have a stricture removed prior to use, but nothing could have prevented that. Sometimes surgery is needed for certain conditions.

Dan

 

[xX_LittleMissValentine_Xx]

Hello and welcome to the forum
I'm affriad I dont have much advice for you but I'm sure there will be lots of peole on here that do.
x x x

 

[Peaches]

Welcome Adrian! I have been in infliximab (Remicade) for 5 years. I to have developed an itchy rash over the last 6 months which may cause me to switch to either Humira or Cimzia injections. Have you tried either of these two drugs? They are still in the biologic family like infliximab, but are human based rather than mouse based - so less prone to causing some reactions. If you have not tried them, then maybe that could still be an option for you? As far as surgery - it really depends on what your issue is exactly. If you have an area of scar tissue that has created a stricture - then that may need to come out. If you are trying to heal a fistula and the infliximab isn't doing the trick - then you may need to have surgery. I have had 6" of descending colon removed and healed pretty quickly after surgery - but as with most people - needed to go on a maintenance drug to keep the disease quiet. I'm sure you know lots of this having lived with it so long. Anyway - glad you have joined us - let us know if you have any more questions!

 

[My Butt Hurts]

Hi Adrian! You can find out about a lot people's experiences on here just by using the search option. There is a "Remicade Club" thread that you can join and share your Remi experience with us. How long have you been on it? I have been on for 13 months and am in almost complete remission, and haven't had problems with bad side effects. Are you on anything else with the Remicade?
Also, do a search for 'surgery' or 'resection', and you might find people's stories about that. This is one great place to browse. As scary as surgery sounds, it has bought many people a good chuck of time with remission.
Welcome to the forum!
MBH

 

[tamesis]

Welcome Adrian!
I haven't been diagnosed yet, nor have i been around long, but this forum is full of support, and lovely people. Hopefully you are able to find something that works for you soon, it's frustrating to feel miserable all the time and have nothing you can do about it.

 

[shazamataz]

Hi and welcome Adrian Sorry to hear you have been battling this for so long! It must have been quite a ride for you! I hope you can get things under control and avoid surgery, but then people say they feel much better for a long while after having it done.

 

[idahogirl]

Welcome to the forum.

I would be willing to bet that you have not tried Low Dose Naltrexone. Many doctors are not even aware of its use for Crohn's.

http://www.lowdosenaltrexone.org/

http://www.ldnresearchtrustfiles.co.uk/docs/2009.pdf

I use it, and am doing fine. I did still have to have a stricture removed prior to use, but nothing could have prevented that. Sometimes surgery is needed for certain conditions.

Dan

Hi Dan,

In my searching for answers, I have also found the two websites you have posted above on low dose naltrexone. I am a new member and independently shared the same info earlier today in the food thread. I personally know of someone who cured himself of Non-Hogkins Lymphoma ten years ago using low dose naltrexone and change of diet. How long have you been taking LDN?


I want to thank you for making the suggestion in another post on how to find a practitioner who will prescribe low dose naltrexone by calling pharmacies. I did just that and on the first call picked the right Walgreens in Idaho Falls that happened to be the specialty store that compounds naltrexone in lower doses. The pharmacist gave me the name of a rheumatologist who prescribes LDN. When I see my GI next week to tell him I have decided to take LDN instead of 6-mercatopurine that he wants to prescribe, I will have a backup doctor to contact in case my GI refuses to prescribe LDN.

 

[adrian mcdonnell]

thanks

I would like to thank everyone for there useful information. i have been on infliximab for 8 months but my rash is getting worst and my hair is stii falling out. I will ask my consultant about the various medication that has been mentioned.

Thank you all.

 

[braveheart]

Dan,

How long have you been on LND?
This treatment seems to be pretty new.

Welcome to the forum.

I would be willing to bet that you have not tried Low Dose Naltrexone. Many doctors are not even aware of its use for Crohn's.

http://www.lowdosenaltrexone.org/

http://www.ldnresearchtrustfiles.co.uk/docs/2009.pdf

I use it, and am doing fine. I did still have to have a stricture removed prior to use, but nothing could have prevented that. Sometimes surgery is needed for certain conditions.

Dan

 

[krahsdnal]

Welcome!

I have been on remicade for about 4 years, the only side effects (yes i verfied this with the infusion nurse) was increase presparation. Other than that there are no other limitations. I usually just take the time needed for the infusion from work, but bring my laptop and work from the infusion center. It was pretty much a wonder drug for me up to now, the latest flare wasnt controlled and I have developed fistulas.

I am getting the small bowel reduction (LOL) done on monday, intial discussions with my GI is that we will continue with the remicade, but need to see how that plays out

 

[PhotoMom6984]

Adrian,
Welcome!! Totally understand your frustration w drugs/side effects and trying to manage Crohns disease symptoms. My last reaction was to Remicade and it was severe about 5yrs ago. Had been on Asacol, Pentasa, Imuran, 6MP and oodles of Prednisone. Remicade seemed to be my savior drug and worked for about 1yr until the allergic reactions could no longer be managed and lead to a Severe Allergic Infusion reaction. It took several months for my body/mind to rebound from it and in a futile attempt I was placed on Entocort 6-9mg as my maintance medication due to a study in Europe at the time that stated 2-3yrs would be acceptable. I just went for rebiopsy etc in Nov and found disease still present in ileum and sigmoid. By a miracle someone mentioned to me about LDN. I had never heard of this and was amazed at the data supporting its use in Crohn disease. The website Dan has posted helped me inform myself and also made contact w someone that gave me info on MD's in my area that support the use of LDN. I have just started my LDN week 4 on 4.5mg off Entocort. Have also gotten second opinion. Knowledge is power and it was time for a change in MD for My team. Hang in there and keep us posted.
Debbie