Newby here

[crohnwifey]

Just joined. Trying to figure the site out a little still. It is actually my husband with Crohn's I'm just obsessed with his well being! It's nice to find support sites!

 

[Marcy]

Welcome crohnwifey,
I too am still quite new to the forums here.
You will find a wealth of information on here and the people are all very wonderful. Never an unkind word to anyone and if you have questions and still can find answers through the threads, just ask everyone is willing to give information and help with understanding. Once again WELCOME and best wishes

 

[Angrybird]

Hello and welcome! As Marcy has said there is lots of info availablr here and if you cannot find the answer you are looking for do not hesitate to ask. Also never worry about going into too much detail, we are used to descriptive posts here

If you/your hubby doesn't mind perhaps when you have a mo could you tell us a bit more about things... When was he diagnosed, what meds is he on, is he well/unwell at the moment?

 

[crohnwifey]

Thank you all for the kind words and support. My husband is now 29, diagnosed with crohn's at 14, he was pretty sick for a few weeks- flu like symptoms, ended up in the hospital with an obstruction, had a few cm's of small bowel removed and was then diagnosed, started on I think pentasa after his discharge. Did well for a few years. Had a few flares that were managed with steroids, did a few infusions of remicade around the age of 20 or so, but had insurance issues so had to stop. Unfortunate because they worked well for him! Suffered off and on with rectal abscess's that were managed with antibiotics. Changed to asacol somewhere in there. At about 24, had about a subtotal colectomy. Had about a foot removed, initially the surgery was only suppose to be for a stricture in the lower end, toward the rectum, but the dr (a general surgeon-wrong move- but we learned from it) saw some diseased colon and took it out. So now he is on 100mg's of imuran- it was suppose to be 150, but he got so nauseous and had bad stomach pains, the dr said to go down to 100. A few months before that he has suffered with 2 obstructions that were thankfully able to be managed with steroids then balloon dilated through a scope!!! Whew! Those are areas that strictured from his previous resections. There are also ulcers there as well. He is still suffering from the abscess on his bottom, and is suppose to have a seton placed at some point soon. Im hoping this Imuran will be a miracle med and kick in soon and heal it without the seton. I just feel like the seton is going to set him back so much, pain wise and attitude wise. He has felt pretty good lately- even with the abscess, they usually clear with antibiotics, but then he has gotten 2 cases of cdiff. Ugh. I just don't think he really knows what he is in for with the seton and I think its going to put him in pain and be a shock, and make him depressed. Worried about that! He also takes multivitamins, immodium like candy, B12 pills(I know- probably not the best route), calcium, and Im just starting to convince him to take Vit D3, and probiotics. He really hates taking the probiotics, he says they make him gassy and crampy. I told him to give it a solid 2 weeks, then if they still bother him to stop. Oh, and he takes fish oil. And wellbutrin. I think thats it. Im going to email his dr about LDN and questran. He is a bit of an ass, so I am afraid of his response. We are going to change dr's its just that we cant find the right time. It's like a breaking up from a bad relationship! Lol! Anyways, that's my man in a nutshell. When you put it all out there like that it sounds like so much! His brother also has crohn's, its mild. My husband is so wonderful! He is an amazing father to our wonderful children, a fabulous husband. I just want to see him at his best, and I am obsessed with trying to get him there!

 

[Angrybird]

It does sound a lot but I think your hubby is very lucky that he has someone like you by his side who is clearly keeping an eye on things and supporting him. If he is anythng like me there are most probably times that he gets complacent about symptoms etc because we get so used to feeling like we do, I didn't realise until last year that people do NOT get tummyaches for most of the day every day (I thought if I didn't get diahrroea with them then I was fine), when my hubby found out I got a stern talklng to and was made to call the IBD nurse asap, tests eventually confirmed a stricture....ooops :ybatty:

How long has he been on the Imuran? Has the doc said this can help with the abscess? I assume he still has a fair bit of D if he is popping the Imodium? With regards to the B12 I would have thought having it injected would be better as in tablet form you are still relying on it being absorbed by a part of the body that is struggling to do this hence the deficiency?

I do hope you are soon able to find a GI doc that you can be more comfortable with, it can be a very problematic area for many here and sometimes the new guy might not be any better, in fact some are can be worse...wishing you lots of luck here.

 

[crohnwifey]

Wow, did your structure have to be operated on? As far as his diarrhea- the last resection when they took all of that large intestine, he has since had problems. I try to get him to drink more Gatorade and less water (this was advise from a dietician- g2 plus added salt) but he says that sports drinks give him puddley poops. I try to only tell him information in an educational loving way and try so hard not to nag. And as far as his dr- I have a list of 2 others I would like to try that come highly recommended. The one have now is good, just not nice. He's the head of the dept so you know. I am fortunate, I am a nurse and work at a fabulous hospital and know a lot of peds GI drs so they give me the scoop on the adult GI drs. He has been on imuran since oct? Nov? Did I see you are on it too? I wonder if others suffer from the abdominal pain like he did. It was weird. The nausea was understandable.

 

[crohnwifey]

Oh and yes, imuran is suppose to heal ulcers and fistulas/abscesses. And about b12- no dr has ever brought up the topic. I don't know if he is deficient. He IS tired a lot and he did have a small bowel resection, I'm going to guess it was the terminal ileum that was resected but I don't know for sure. This is something else I need to ask about-b12 levels and injections.

 

[Gabismommy]

I have a peri-rectal abscess/fistula wrapped around the spinkter muscle. I'm sure I spelled that wrong, haha. I have had a seton placed this week, on Valentine's Day. It was the day after my birthday, ugh!! If you have any questions about that feel free to ask. I'm very glad he has someone like you, I wish I would have. You have no idea how much it helps him. Try to keep that positive attitude and good job! Welcome!!

 

[Gabismommy]

Oh and I have actually been considering asking about Imuran or Cipro & Flagyl combination for my abscess/fistula. I have been on an antibiotic called Bactrim this whole time. Seems like the drainage is cleaner lookin now.. As odd as that may sound..

 

[Angrybird]

Hi, yes I am on the Imuran too. This is my second go on this and I have high hopes that it will not cause a problem this time. I am slowly increasing my dose to a maintainence level of 125mg. I did have to have the stricture cut out, it was my first op since diagnosis so I don't think I have done that bad. I would be very surprised if hubby wasn't B12 deficient, the terminal ileum is where this mostly gets absorbed so if this is where is was operated on..........Also have his vit D and Folate checked.

 

[crohnwifey]

Thanks for the vitamin advise. I'll ask dr. What happened before with the imuran?

Gabismom- how's your seton? How is the pain? They say the first few weeks is the worst, then after a while a lot of people say they don't even know its there. Do you have any problems with control?

 

[Angrybird]

I developed neutropenia, I had been on it for about a year at 200mg - this was over 7yrs ago. My doc said that it shouldn't happen again and as I should not need to be on as higher dose this time round I am hopeful that he is right.

 

[Doctor Quack]

I've been on B12 injections now for about two years. I self-inject once per month (for life) since I can no longer absorb B12. Ileum has been "bye bye" for about 14 years. Have been on Coumadin (warfarin) for about 3 months now due to blood clots. Am advised to hold off on the B12 injections for a while because of it - but blood test show I still have enough "reserve". I understand the liver holds onto B12 for some time before it is "used up". Is that true?

 

[Gabismommy]

The pain has decreased substantially since it was first placed. It was pretty rough for a few days though, in all honesty. I do think I had built up a tolerance to the Percocets they gave me as I had been them on a month prior to the surgery from another surgery and then the abscess. I was taking one a day before work while they were packing it and one at night to help me sleep. He gave me Lortab which is weaker a few days ago and I have been taking one every 5 hours today. I still feel it a bit but I am kind of used to pain in that area by now. I see my surgeon again for my post op check up this Wednesday so I can let you know how that goes. As far as control goes not much has changed, I can make it to the restroom but I better not stop on the way. I hope that helps.

 

[crohnwifey]

Gabismommy- glad to hear that things are getting better for you, and thank you for being honest. Yes, keep me updated on your progress. It sounds like you are doing great so far, you just got it less than a week ago! Oh, and happy belated birthday, oh and your baby is beautiful! How old is she?
Doctor- sorry you are suffering from blood clots, like you didn't have enough going on already?! Hope all of that clears soon. As far as the liver storing b12, Im not sure, I haven't heard that. Im sure its possible, the body is amazing!
Angrybird- (goodness, I cant look at your name without wanting to go play! I just started playing recently, its SO addicting! Those damn little bird get you! Just one more level! I can't get anything done!!!) About the imuran, that was a big dose that you were on, so hopefully it won't happen again. Are you getting bloodwork every other week right now? CBC and CMP?
And Im going to email his dr this week and ask all of my questions. I'll update all of you!

 

[Gabismommy]

No problem, I don't want people sugar coating things for me and then end up blindsighted. After the first few days it's really no biggie and mine may not have been had I had meds that worked better from the beginning. As I said, I suspect my body may have had a sligh immunity to the pain pills. I had my gall bladder out 3 weeks before the seton placement. I know about the depression as well. I was out of work for a couple days over a month during my diagnosis process. I was very sick. I finally returned to work after my first surgery just to be told I had to have the seton surgery. I was so angry and depressed and hate to admit it but scared. I'm not a big fan of being put out.. I'm actually thinking maybe I will feel okay enough to try working again after my doc appointment if they start me out slow. Idk how your hubby is but standing and putting pressure on mine is a bit painful at times.

Thank you for the birthday wish, it went fairly well considering I was in my presurgery mood. Haha. My little girl is Gabrielle but I call her Gabi. She is 15 months old and my entire world. It's amazing to experience. She is what has kept me pulling through. Thank you very much, I think she is gorgeous but I am mommy so that is a given. Haha.

I also love Angry Birds!! Ever tried Fruit Ninja or Peggle? Good stuff..

 

[Gabismommy]

Also a warning, I did have bleeding for a day or so after work and have the lovely pleasure of wearing pads and gauze all the time but have for a while to catch infection. I am on antibiotics and have been for about 3weeks. The infection looks.. Cleaner? Idk how to explain it.. Just doesn't look as gross now.

 

[Angrybird]

Hi, I am having weekly blood tests at the mo and they are doing a full blood count, liver function tests, U&E's and CRP. In about 3 weeks I can go to 2 weekly tests for 2 months and then all going well I will then just have 2 monthly tests.

The game is very addicting, I have even started collecting the cuddlies! I have nearly completed all levels and that includes ALL of the seasons and Angrybird's Rio stuff as well. I have not heard of those other games Gabismommy but will now have a look, I would also recommend Plants Vs Zombies

 

[Gabismommy]

I agree, Plants Vs Zombies is awesome! I play a lot of games. I mean even the ones on consoles a lot. I'm a gamer girl. I have way too many. My brother corrupted me as a child!! Lmao. You should definitely check them out, Peggle is great!!

 

[Gabismommy]

I have Angry Birds stickers on my lighter as does my mother. She drinks her tea out of an Angry Birds cup. I got her addicted when she got an iPhone.